Down the MS Path

2011-11-09T03:18:00.000-08:00

Multiple Sclerosis Central asked me to write a series of articles describing progressive types of MS. I thought it was a good idea because although there was a significant amount of literature on MS, very little of it is about progressive types. Here are the articles that were written and published in the spring of 2009. Please understand some information may have been updated since these were published.

MS Progressive Types: What Type Are You?

Rose is a rose is a rose." ~ Gertrude SteinA rose is a rose, but can we say MS is MS? After all, MS affects the autoimmune central nervous system of every person who has MS. But after that it gets a bit murky.Just as a rose is identified by characteristics such as color, size and fragrance, so is each person's MS symptoms unique based on. . .

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MS Progressive Types: Secondary Progressive

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MS Progressive Types: Primary Progressive and Progressive Relapsing

Let's continue looking at characteristics of Progressive MS. I already talked about the different types of MS and focused specifically on Secondary Progressive. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS. Today the focus is on..

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MS Progressive Types: Living with Progressive MS

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MS Progressive Types: Treatments

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MS Progressive Types: Progressive Treatment Trials

" What is research but a blind date with knowledge?" ~ Will Harvey At least 60% of all MSers have Relapsing/Remitting MS (RRMS). It follows that most clinical trials apply to RRMS as well. The goal of these clinical trials is to slow or prevent slipping into the chasm known as Chronic Progressive MS. There is less known and..

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MS Progressive Types: The Human Side

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MS Progressive Types: Frequently Asked Questions

This series of articles about Progressive MS has a lot of information, and not all of it is easy to read or understand. Perhaps a good way to review the subject is to cover some of the frequently asked questions.How do I know if my MS is a Progressive type?MS may start with an attack followed by a continual increase in the symptom severity,..

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MS Progressive Types: Living with Happiness

MS was never part of the my life plan. Like most, my initial MS diagnosis was a long and bumpy road. When my MS became progressive, the road changed to a detour in uncharted territory with no end. How can I face such a bleak future? It seems to me that I have a choice between two basic options: I can live with Progressive MS..

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Please read the comments for a little more information. Articles like this and blogs about MS and by MSers are found on Multiple Sclerosis Central. If you have MS, or an interest in MS, feel free to join and participate.

Create a cloud

2011-10-25T04:01:00.000-07:00

Take a look at the cloud I created based on topics in Down the MS Path. This is interactive, so do not hesitate to click on words that interest you.

This cloud was created using Infomous, currently a beta site.

Statistics for Osteoporosis and Low Bone Mass

2011-10-21T10:55:00.000-07:00

Here are Osteoporosis statistics based on race:

Voting for Chelsea's Hope

2011-04-25T21:30:00.000-07:00

My friend told me about a contest that he is very interested in. As luck would have it, Michael's choice has and has made it to the finals. The winner gets a NASCAR car decorated to highlight their cause -- helping increase awareness.

Michael is supporting Chelsea's Hope, a non-profit for Lafora Children Research Fund. Please vote for Chelsea's Hope.

Voting is simple. Just CLICK HERE. Come back and vote every day until May. Tell your friends. This is a good thing, and it is easy.

To learn more about Chelsea's Hope, CLICK HERE.

To read Michael's post, click on The power of the internet to do good. More about Chelsea's Hope.

To see all of the finalists, just click here.

And just in case you missed it, please vote for Chelsea's Hope. Just CLICK HERE. Come back and vote every day until May. Tell your friends. This is a good thing, and it is easy.

Thank you.

Paralympics, Sports and MS

2011-04-19T03:44:00.001-07:00

Do you know what my favorite part of the game is? The opportunity to play. ~Mike Singletary

Exercise is recommended for MSers to help maintain their abilities and general health. However, most MSers have to limit their workouts to fit their abilities. You didn’t think your MS diagnosis meant the end of your active sports life, did you? Here is the story of others who may have thought so, but learned life can still be active and even thrilling.

Some WWII veterans thought their lives were effectively over because of injuries that occurred during the war, but their government would not let them give up. They had been trained, they were strong, and there was so much life left to live. Let’s see what they did to improve their quality of life and to make life worth living.

The British government, after World War II, asked Dr. Ludwig Guttmann to work with spinal injuries in war veterans. Guttmann founded the Stoke Mandeville Hospital. To further veteran's therapy, the doctor used sport for rehabilitation, and in 1948 their therapy turned to sport which turned to competitive games. At first there were 14 men and two women competing annually in the game of archery.

Over the years, there were changes to these games as they expanded offering opportunities to many people with disabilities. They were demonstrating to the world that having a disability does not necessarily put an end to their productive life.

Following are some highlights of Dr. Guttmann’s sports therapy and how it evolved:

Injured Dutch servicemen joined in the games by 1952, making this activity truly an international competition for the first time.
By 1960, these games had been opened to athletes with disabilities who were not military.
That year the competition was hosted in Rome following the Olympics, creating the first Paralympic games.
Rome hosted the Paralympics after the Olympics; however, those facilities were not wheelchair accessible (surprise!) and military personnel assisted athletes between venues.
In 1960 there were 400 athletes competing from 23 countries.
In 1976 athletes, were no longer limited to wheelchairs.
Improvements were made in designing and constructing facilities for wheelchairs as well as more types of disabilities.
By 2004, there were almost 4,000 athletes and by that time there were even more than 3,000 media representatives, meaning the world was taking interest.
Beijing hosted over 3,900 athletes from 148 countries
In 2010, Summer Paralympics offered 420 events in 20 sports. Winter Olympics had 64 events in 5 sports.

“Para” represented paraplegic at first, but as athletes with more and different disabilities were included, the meaning of the prefix was changed to the Greek “parallel” for “side-by-side.” By then it represented the fact that Paralympics could be considered as equal to the Olympics. These two sports events developed and were scheduled “side by side,” Paralympics after the Olympics, often in the same venue.

Paralympic games, like the Olympics, are now a multi-sport event comprised of international multi-sport events including world-class athletes with disabilities.

Paralympians have been searching for funding equal to Olympians, as well as opening the games to more sports such as track and field. There are even talks about Paralympians once again being eligible to try out and participate in the Olympics, athletes with disabilities competing head-to-head against athletes with no disabilities - athlete vs. athlete and equal opportunity.

The games began as rehabilitation for athletes with spinal cord injuries, soon adding mobility disabilities, amputations, blindness, and Cerebral Palsy. There was always a category called others so athletes with other disabilities, such as multiple sclerosis, can also participate. Today, people with all types of disabilities either play, or are interested in playing, in the Paralympic games. In fact, MSers have participated and with an admirable degree of success.

Of course I do not know about all of the MS Paralympians, but I do know some. In 2008, equestrian team Great Britain at the Paralympics in Beijing included MSers, both Simon Laurens and Anne Durham. Simon Laurens is in the top 10% of the 100 paralympic riders in the UK. Great Britain has acquired more medals for Paralympic dressage in the last 25 years than any other sport. Let me repeat that: Great Britain has acquired more medals for Paralympic dressage in the last 25 years than any other sport.

One rider is a team member for the fifth time. Anne Dunham, who is in the most disabled category of Para Dressage riders, has won a team gold as well as an individual bronze. In this category, medals recognize both world class athletes and horses.

Equestrian events are perfect for MSers since hippotherapy is such a good therapy for us. However, there are so many more sports that work for us, too.

Dr. Guttmann’s initial idea was to use sports as a rehabilitation tool. Sports are a way to keep in shape, to feel better about ourselves, and to remind us we are still capable of doing all kinds of things. We are still capable of being thrilled.

Notes and Links:
Wikipedia on Paralympics
History of Paralympic Games

Food and MS

2011-02-05T04:59:00.000-08:00

There is a question -- Does diet ake a difference?

Last year I wrote a series about that question called Food and MS. Here are the articles that made up that series:
Food and MS
Food and MS: Beginning to Prepare your Kitchen
Food and MS: Tools, Utensils, and Counter Top Utensils
Food and MS: Tips for Cooking
Food and MS: Let's Go Shopping
Food and MS: Diets
Food and MS: Nutrition
Food and MS: Nutritional Food Sources

Quality of Life for Children

2010-08-22T08:33:00.001-07:00

Here is my contribution last week about Pediatric MS in MultipleSclerosisCentral.com. Children with MS are subject to a Quality of Life that plummets.

This is a section of Health Central.

Pediatric MS: Quality of Life?

by Vicki on Multiple Sclerosis
Friday, August 20 2010

Young people with multiple sclerosis still make up a small minority of those with the disease, and it has been only recently that Pediatric MS has even been recognized. Just as with MS when it was first recognized, diagnostic criteria were unclear and treatments were on a trial-and-error basis. There was not a great deal of awareness of ... Read more

Pediatric MS - MS-like Symptoms

2010-08-15T07:57:00.000-07:00

Here is my contribution to the articles written last week about Pediatric MS in MultipleSclerosisCentral.com. Children and young adults may exhibit MS-like symptoms that may never develop into MS.

This is a section of Health Central.

Pediatric MS: Is it MS?

by Vicki on Multiple Sclerosis
Thursday, August 12 2010

When a child exhibits MS-like symptoms, it probably means he or she has a problem with myelin. Whether the diagnosis turns out to be MS or not depends on the condition and the lesions. Kids Get MS, Too, by Jayne Ness MD-PhD FAAP, FAAN, tells the story of children 18 and under who have demyelinating conditions. It was published by the ... Read more

and Lisa Emrich wrote:

Pediatric MS Centers of Excellence - Read more

Pediatric MS: Resources for Kids, Teens, and Parents - Read more

Introduction to Pediatric Multiple Sclerosis

2010-08-05T03:12:00.000-07:00

Here is the introduction for articles written this month about Pediatric MS in MultipleSclerosisCentral.com. For years MS was considered a disease of young adults. More research has found there are older people being diagnosed, but there are also teens, children, very young children — and even babies!

Pediatric MS is recognized by the medical community, but more education and more awareness is needed. MS is not affecting just young adults. MS possibly affects everyone. This is a section of Health Central.

Pediatric MS - We Did Not Know

by Vicki on Multiple Sclerosis
Wednesday, August 04 2010

Education about Pediatric MS is on the rise, and more children under 18 are being diagnosed with MS. With all of the new information and education, there is still a need for awareness that children have MS, too. Children are often misdiagnosed or not diagnosed at all. For so long, MS was misunderstood. In the 1950's, when I was a child, it was... Read more

Grandchildren Understanding MS

2010-05-13T01:55:00.000-07:00

An Open Letter to Grandchildren
by Vicki
Wednesday, May 12 2010

Dear Grandchildren, Mother's Days was just a few days ago. It always brings memories to me of scribbled cards and sometimes bouquets of wild flowers picked for me by my children. Some were actually weeds with little flowers they thought were so pretty, so they were flowers to me, too. Now my grandchildren, I always think of you as so cute,...

Sit and Stay Fit with Yoga

2010-04-13T03:08:00.000-07:00

Here is an article, the first of a short series on MS and Yoga published on Health Central April 7.

Living well with MS can't exclude exercise.There was a time when my daily routine included walking for miles and playful activities like horseback riding, skiing, and dancing, but then I began to have trouble balancing and walking, so my life changed. I was familiar with yoga, and that fit right in as my abilities changed. When or if... Read more

There is a reference to yoga teacher Jenney Alterman's story. Here is the rest of Jenny's story.

"When I was a kid, I had a friend who was sick a bunch. She was always on the skinny side and was always kind of pale and weak. I thought it was just normal for some people to be that way. At the beginning of our freshman year of high school, we tried out for the basketball team. We had practiced all summer long and were so excited when we found out we made the team. We had visions of hoop victory, side-by-side showing everyone we deserved to be there. But a week later, we both got the bad news. My buddy, my partner in crime, my best buddy had mono. She would not ever play in a high school basketball game, she would never get to see me play in a game, and it would be nine months before I would see her again. That moment I knew something was not right with her. It wasn’t the mono, it was more than that. But at that young tender age, I had no idea what it was. Maybe it was just a feeling I had.

"A few years ago I attended training for yoga teachers and the adaptations of yoga for individuals with MS (Multiple Sclerosis). On that first day of training I knew what was wrong with my friend, she has MS. I haven’t seen my friend in many years and wondered where she was and how she was feeling. Wouldn’t you know a week after the training we found each other on Facebook! Wow, funny how the world works. I never made mention of MS to her, other than my training classes, but I think she knew that she had MS, but was unable to face it.

"I have always thought of my students and multi-level beings, containing both suffering and non-suffering parts of the body and mind, the way I want to be thought of by others. When working with someone, I see them as more than just a physical body. We are emotional and spiritual beings with different moods, energy levels, needs and desires. This is where yoga is so beneficial. We are not limited to the physical constraints. We can use breathing techniques, meditation and guided relaxation to promote a healthy mind and spirit to achieve freedom and flexibility beyond the muscles and bones.

"When working with MS it is important to respect the other person completely, understand the effects not just on the body, but on the mind as well. It’s hard for people with MS sometimes to face themselves in the mirror and not get depressed about their circumstances. This I believe is the most crucial part of the practice of yoga. Lifting the mood, accepting the body as it is and maintaining a healthy outlook. This can be the greatest obstacle to overcome for both the yoga teacher and student. However, this is not just limited to folks with MS, anyone can suffer this way. This surrendering is the turning point of many, and even though it is hard for all involved, I cherish every time I witness it. It means someone’s path has made a turn in a healing and healthy direction and that no matter how bleak the future seems, the mind and spirit can always shine a light to guide the way.

"My friend has since come out of the closet and shared she has MS. She now has acceptance and is on a path of light and love with all of us to support her."

Want to Walk this Weekend in LA?

2010-04-05T02:55:00.000-07:00

One of my favorite online friends organizes a team walking for MS, and has been very successful earning funds for MS research. His team is named the JiggyWiggits. If you are in the LA area, and you are ready to walk for MS, think about this:

Michael invited you to "SAVE THE DATE - Emmylou Tribute - MS Fundraiser -Coming
April 10!" on Saturday, April 10 at 7:00pm.

Michael says, "This Saturday April 10th Join us for a great night of LIVE music
and a tribute to Country Singer Emmylou Harris at the Talking Stick on Lincoln
in Venice, CA. 100% of donations and proceeds from all auction items go to Team
JiggyWiggits!!".

Event: SAVE THE DATE - Emmylou Tribute - MS Fundraiser -Coming April 10!
Start Time: Saturday, April 10 at 7:00pm
End Time: Saturday, April 10 at 10:00pm
Where: The Talking Stick Coffee Lounge

To see more details and RSVP, follow the link below:
http://www.facebook.com/n/?event.php&eid=108233655861496&mid=222f2dcG1e223f6fG5851ebeG7&n_m=vvb%40aol.com

Do You Rely on Medicare?

2010-04-01T01:09:00.000-07:00

Beginning April 1, and that is today, many physicians plan to reduce services to Medicare Services. No Fooling!

This is because Congress is on spring recess and they did not complete a vote before recess. However, if a successful vote is held next week, expiring programs will be extended for 30 days.

Plans being discussed include not accepting new Medicare patients, dropping all Medicare patients, laying off staff, or even closing the practice all together!

Baby Boomers are aging and swelling the numbers of Medicare patients. It sounds as if a large number of older people may be losing access to medical care, although they are still covered by insurance. Once again, No Fooling!

Walking for MS Awareness

2010-03-22T03:50:00.000-07:00

If you haven't signed up to walk in Dallas, it's time!

Today is team captain early registration. The walk is Saturday, March 27.

Support MS Awareness raise funds this week.

Order your "I Walk Because ..." sign. These personalized signs will be posted along the routes March 27. Signs are $25, with $20 going back to your fundraising account.

Postcard Campaign for MS

2010-03-13T01:57:00.000-08:00

During this month and week for MS, Our Heart Greeting has an idea to help spread awareness.

We're hosting our THIRD annual Postcard Campaign for MS!

Give it a try!

Exercise and MS

2010-02-06T03:14:00.000-08:00

Besides improving mobility and strength, exercise therapy improves daily living, quality of life, and even the mood of MSers who participate.

What about fatigue? There is a theory that aerobic exercise might fight fatigue even though exercise usually heats up the body, and for MSers heat often results in fatigue. Hmm. Sounds like a vicious circle. Maybe not.

The University of Buffalo is researching that very question. Their study will determine "the effects of a 12-week aerobic exercise program on fitness, core and skin temperature, and heat flux in MS patients."

And here's something for everyone to consider. What you eat after aerobic exercise makes a difference in the benefits you get.

Be careful, stay cool, eat right, and stay fit!

Ampyra Approved!

2010-01-22T15:10:00.000-08:00

Today Ampyra received FDA approval.

This therapy by Acorda Therapeutics increases walking speed in the four major MS types - RRMS, SPMS, PPMS, and PRMS.

Ampyra is in tablet form, previously known as fampridine. It is being developed in the US by Acorda Therapeutics, the company that works with zanaflex, and outside the US by Biogen Idec.

Ampyra is expected to be commercially available by March of this year. Read the press release.

Two Ideas

2010-01-06T03:39:00.000-08:00

Michael B. Gerber has some clever ideas and observations that help us think outside the box. Here are two posts that do just that:

It can be done
Michael tells us a marching band from a blind school reminded him for something to be done, the idea must come to someone who then shares it. He asks us each to ask ourselves "What can I do?" When you have an answer, share it. It may be the beginning of something important.

The Story of an MSer taking a Skydive
I have been thinking about this since I first read it, falling, not soaring. Almost everyone I know really like it whether they can describe it or not. This is not in my bucket, but I am glad he did it and shared the experience with us.

I was struck by the fact that they were not just willing to accommodate him — they were ready and experienced to accommodate people with disabilities! What does this mean? It is not unusual for a person with a disability to take advantage of their service. How great is that!? If it can be done for skydiving, it can be done for many, many other activities.

Thanks for sharing, Michael, and Congratulations on your jump.

In a comment by Andriana she wondered “if our minds disable us from going/doing beyond the norm.” I believe, and I know I am not alone, that the brain IS the biggest personal disabler in people with and without disabilities. Are you feeling your disability excludes you from an exciting activity? Check it out.

Oral Medication

2009-12-28T02:53:00.000-08:00

Okay, pills for MS are not yet available, but they are coming soon. Soon is a word we hear about medical trials quite often. We do not know exactly when soon means, but we are closer than ever before.

There are five, yes, five different possibilities of oral medications in trials at this time. The first two approved will probably be cladrbrine and fingolimad. Familiar names — coming soon to a pharmacist near you.

Many of us with MS have been waiting for these two oral medications to reach the market. When it happens, I hope there are plenty of pills and that they make a difference in our lives!

My Card for You

2009-12-24T17:16:00.001-08:00

For the Christmas Tree, Garry used IFL Labs software for the fractal and Jasc animation software for the animation.

Pioneers in Research

2009-12-10T15:17:00.000-08:00

The University of Texas Southwestern (UTSW) is one of 23 schools nationwide to receive a grant from Howard Hughes Medical Institute (HHMI), called Med to Grad, helping Ph.D students learn to move laboratory research to clinical trials.

Dr. Helen Yin started the program at UTSW, calling the participating students pioneers.

"This major grant from HHMI is a creative initiative that highlights the fundamental linkage among our core missions of education, research and patient care," said Dr. Daniel K. Podolsky, president of UT Southwestern. "It will significantly further out highest priorities as an academic medical center committed to biomedical research and its translation into innovative patient care."

Research Studies

2009-11-16T02:47:00.000-08:00

Want to volunteer for a medical research study?

UT Soutwestern sent a press release about ResearchMatch where volunteers can be matched — online — to a scientific research project, or clinical trial, for which they might qualify. The National Institute of Health gave UT Southwestern a grant to help quickly move laboratory discoveries into actual therapies.

This new allows the medical community "to cast a wider net into a deeper pool of potential subjects.” Both healthy people and those with illnesses and conditions can take advantage of this opportunity!

MS and Evils

2009-11-14T22:29:00.000-08:00

One of my favorite online friends Michael B. Gerber doesn't write in his blog about MS, he writes about life. His happens to be a life with MS, so MS sneaks in there now and again. You may notice his blog "Perspective Is Everything" in my "Favorite MSer Sites" list.

Last week Michael sent me a story about medication and side effects. He asked if I had something to add, but it was good, as his writing is. I did, however, manage to throw in a word or two and make a change here or there. Read our post here: The Lesser of Two Evils

His is a blog certainly worth reading. While you're there, look around. Enjoy.

Pain and MS, Yes, It Hurts

2009-11-06T14:18:00.000-08:00

I wrote a series of articles for Health Central on Pain and MS, covering the types of pain and treatments. These are general, just to give you an idea. I am sure there are some pains as well as some treatments that have been left out. Please let me know! The best idea is to talk with your doctor about any pain and how to treat it. Here is the article series —

Pain and MS

Is MS painless? When I was first diagnosed with MS, it was common for the MS literature to refer to it as a painless disease. I was dealing with a new diagnosis of a disease I did not yet understand and was wondering what else was wrong with me. Articles said MS didn't bring pain, but I was in pain. Many MSers know that... Read more

Pain and MS: Neuropathic Pain

There is pain in MS. It can be acute or chronic, generally categorized as neuropathic, musculoskeletal, or tertiary. Let's begin looking at details. Sometimes the nervous system does not function properly, and it actually becomes the cause of pain. Neuropathic (nervous disease) pain is the most common kind in MS. That... Read more

Pain and MS: Musculoskeletal Pain

There is pain in multiple sclerosis, with several categories that can be acute or chronic. My last article discussed neuropathic pain. Today, I am going to talk about details specific to musculoskeletal pain. Our musculoskeletal system -- bones, muscles, connective tissues -- provides our bodies with stability and movement.... Read more

Pain and MS: Tertiary Pain

It has been established that there is pain in MS. I have talked about neuropathic pain and musculoskeletal pain, which is generally considered secondary pain. Now it is time to talk about tertiary pain. Tertiary pain can be broadly defined as the social, vocational and psychological complications brought on by the primary and secondary symptoms.It... Read more

Pain and MS: MS Plus

If you have MS, pain may be a large part of it. What happens when someone has MS plus another disorder that may cause pain. Are you at risk for other pain-causing conditions? I know - you have MS, isn't the MS enough? MS is enough, but life isn't fair, and contracting one condition does not reduce the chance of contracting another. Many blogs and... Read more

Pain and MS: Treatment

There is pain in MS. This series of articles has discussed that pain -- Neuropathic, Musculoskeletal, Tertiary, and MS Plus. Once the fact of pain has been accepted, the remaining question is how can that pain be stopped or reduced. Today, I am going to talk about traditional treatments for each of those pains discussed in the earlier posts. The... Read more

MS and Pain: Alternative Therapies

MS pain can be excruciating, frequent, inconvenient or heavy unending dullness. There are many traditional treatments that help to alleviate those pains. However, they don't always work and there is always someone who can't or just doesn't want to take too much medication. Some MSers are ready to try anything -- just to make the pain stop.Today, I... Read more

Pain and MS: Living with Pain

"The human spirit is stronger than anything that can happen to it." ~C.C. Scott Today, I am concluding the series on pain in MS. Earlier, I talked about the fact that, until recently, pain was not even recognized as part of MS. Then I went into common types of pain, and both conventional and alternative treatments. Now it's time to find a... Read more

Biking for MS

2009-10-16T14:30:00.001-07:00

The National MS Society sponsors 100 bike events to raise funds for MS. All of the participating bikers have one destination — A World Free from MS! Sounds like a place I would like to go there one day. How about you?

My friend, my college roommate many years ago, has a friend who was ready to bike, so she dedicated her ride to me. We met only online. Georgia sent these fabulous pictures of her with her New Orleans team on their ride. Unfortuneately, they were unable to complete the ride as scheduled because of Louisiana's famous weather. Too bad.

They had fun and MS appreciates their contribution. Thanks, Georgia Kobos Thomas!

Health Central

2009-09-16T03:28:00.000-07:00

Health Central is a network that provides information about 40 or more specific diseases and conditions. The information includes blogs and personal stories by people actually living with or touched by those conditions.I write for the multiple sclerosis section.

Each condition also has a section for questions -- any question -- answered by others who may have experience with the question topic.

Browse the site, share your stories or ask a question. I'll see you there!

MS Survey

2009-09-10T03:36:00.000-07:00

Do you want a voice in MS research? Here's a chance.

Lisa Emrich of Brass and Ivory posted this yesterday and asked that we copy and post it. The link to the survey is included. It took me less than 10 minutes. There was no space specifically designated for comments, but I put them in the spaces provided for "other." Will they be read? I hope so.

Here is Lisa's post:

Share Your Thoughts on MS and Genetic Research!!

HereEarlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia.
She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that "they've ask me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations."

She is looking for solid numbers to include in her presentation, so created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research.
The survey is simple - only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.
Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.
Thank you,
Lisa Emrich
Feel free to copy/paste this post in its entirety and post it on your blog and at your favorite MS forums, message boards, and social networks.

Living with MS

2009-09-08T14:50:00.000-07:00

I got this from Mike Deegan on Facebook. It takes only one minute and is a good illustration of life with MS.

I Am So Lucky

2009-08-01T15:14:00.000-07:00

Merely Me asks a question of the week on her MS site located on Health Central. This week the question is “What are you grateful for today?” She always gets interesting answers, each totally different than the one before. This is worth reading. Here is my answer to this week's question:

This is a great question because it makes us think beyond our usual inconveniences and pain. What a good topic for those of us who live every day with a chronic condition; actually gratitude is a good thinking mode for all of us.

At one time (when I was a viewer), Oprah suggested everyone keep a gratitude journal. We were to list three things we are grateful for every day. Many of my items were repeats day after day.

There are only so many big things, and then circumstances took away the one about the US not involved in active war, so there are fewer big things. Then I started thinking of small things. I am still thankful for big things like health, family and friends, but now I find pleasure in successfully completing a tasty dinner.

Each day when I smile or laugh for any reason, I am grateful. When I hear my son (either or both) is happy, or talk with a giggling grandchild, I am grateful. When my foot is in the right position, I am grateful. There are so many things, some relating to my MS and some not; there are tiny miracles throughout the day and I know I am lucky.

I feel grateful that I am so lucky.

Anthony's Science Fair Survey for MS

2009-07-23T14:09:00.000-07:00

Anthony's dad was diagnosed with MS about seven years ago. It has "drastically changed" his entire family's lives. We all know that story.

Anthony, high school student in Michigan, is participating in his high school science fair. For his project, he has a theory concerning ms and geography. In order to explore it, he put together a short survey fo MSers to answer. It is five questions and takes less than one minute.

Please take Anthony's survey.

If you would like to leave a comment for Anthony, here is his original request on Health Central.

MS Progressive Types: Happiness

2009-07-18T15:25:00.000-07:00

This s the last artical in the series on Progressive MS for the MS Section of Health Central. This one summarizes the topic with a question-answer format. There is one left. The FAQ article was first published June 30. Here it is --

MS Progressive Types:

Living with Happiness

MS was never part of the my life plan. Like most, my initial MS diagnosis was a long and bumpy road. When my MS became progressive, the road changed to a detour in uncharted territory with no end.

How can I face such a bleak future?

It seems to me that I have a choice between two basic options:
I can live with Progressive MS and be sad, grieving for the life that is not to be. I can be angry because it's just not fair. With every new symptom, every hint of a potential new symptom, and each function that is harder or slower or just not there any more, I can become more grumpy and cranky. Or,
I can live with Progressive MS and come to peace with it. I can learn to accept each new symptom and delight in things I am still able to do. I can find new ways to enjoy things I have always enjoyed and even find new things to appreciate. I can choose to make an effort to maintain a positive attitude and be as happy as I can be.
Notice that both of these choices still include Progressive MS. I do not like it, but I cannot eliminate it, and I can still choose to be happy.

(read more)

MS Progressive Types: Frequently asked Questions

2009-07-07T14:08:00.000-07:00

This series on Progressive MS for the MS Section of Health Central is winding down. This one summarizes the topic with a question-answer format. There is one left. The FAQ article was first published June 24. Here it is --

MS Progressive Types:

Frequently Asked Questions

This series of articles about Progressive MS has a lot of information, and not all of it is easy to understand. Perhaps a good way to review the subject is to cover some of the frequently asked questions.

How do I know if my MS is a Progressive type?
MS may start with an attack followed by a continual increase in the symptom severity, and that is Primary Progressive MS.

If MS starts with a Relapsing/Remitting course, it will probably advance between ten and forty years, and the clear relapses will be replaced by a gradual worsening of symptoms. When there are no longer periods of recovery, that is Secondary Progressive MS.

Besides the functional characteristics, doctors can see that MS has advanced to a progressive course by using an EDSS (Expanded Disability Status Scale). The EDSS is a standardized measure of global neurological impairment often used in MS to determine type and severity. The National MS Society explains the scale.

(read more)

MS Progressive Types: The Human Side

2009-07-01T12:48:00.000-07:00

This series on Progressive MS for the MS Section of Health Central has included long articles that paint a bleak picture of life with MS. This one adds a personal touch, including stories from several MSers living with one form or another of Progressive MS. This article was first published June 17. Here it is --

MS Progressive Types: The Human Side

With Progressive MS, there is not a moment free from the thought and feel of MS. Pretty scary? This series of articles started with an explanation of the different types of MS and then continued by expanding on Progressive MS. Some of the information paints a bleak picture, but let me add a personal touch.

Here are stories from people with Progressive MS, including me, meant to enhance the picture of Progressive MS with a focus on the human side. My sincere thanks and appreciation to the contributors: David Madison, Beverley Rothstein, Denise Walbrugh and Michael B. Gerber. Each of these stories shows there can still be positive quality of life through diagnosis, symptoms and daily life with Progressive MS.

(read more)

technorati tags: multiplesclerosis, ms, downthemspath, vicki, chronicprogressivems,

Progressive MS Types: Research

2009-06-23T17:31:00.000-07:00

In the series of articles on Progressive MS for the MS Section of Health Central, this one talks aboutresearch. This article was first published June 10. Here it is --

Progressive MS Types: Research

" What is research but a blind date with knowledge?" ~ Will Harvey

At least 60% of all MSers have Relapsing/Remitting MS (RRMS). It follows that most clinical trials apply to RRMS as well. The goal of these clinical trials is to slow or prevent slipping into the chasm known as Chronic Progressive MS. There is less known and fewer treatments for progressive MS types and also less research to address those problems.

(read more)

technorati tags: downthemspath, vicki, multiplesclerosis, progressivems, msresearch,

Pictures of MS

2009-06-19T13:35:00.000-07:00

Can a picture convey what MS means to you?

The Multiple Sclerosis Trust is a UK charity with a mission to provide information, education for professionals, research funding and support. They sponsored a photography contest for MSers to show what MS means to them. This is exciting. My Facebook friend Denise Walburgh is a finalist in the photography contest!

There are nine photographs with a sentence or short paragraph that how or why the image represents MS. One says ". . . the picture says it all." I think each of the pictures provides a personal voice we can all understand.

Check out the pictures. Vote. Denise would appreciate your vote.

technorati tags: , downthemspath, vicki, picturesofms, msphotographycontest, multiplesclerosisimage

MS Progressive Types: Treatments

2009-06-17T15:17:00.000-07:00

In the series of articles on Progressive MS for the MS Section of Health Central, the third one talks about treatments. This article was first published June 3. Here it is --

MS Progressive Types: Treatments

The MS community was thrilled in 1993 when the FDA announced approval of the first drug that addressed the disease instead of just symptoms. Approval of Interferon B opened up a whole new world of possibilities for MSers. In the next few years, a family of drugs -- Avonex, Betaseron, Copoxane -- and later, a fourth option -- Rebif -- became standard treatments as disease-modifying medications for Relapsing/Remitting MS. These standard medications are known collectively by their initials -- the CRAB drugs.

(read more)

MS Progressive Types: Living with It

2009-06-10T11:19:00.000-07:00

In the series of articles on Progressive MS for the MS Section of Health Central, the third one talks about living with it. This article was first published May 26. Here it is --

MS Types: Living with Progressive MS

Each of us has our own way of dealing with bad news, and an MS diagnosis is bad news. When someone is newly diagnosed, it is pretty scary. Some people bend over backwards to learn everything they can. Others just live with it awhile, hoping for the best. We all learn as we go along because living with MS is such an ongoing challenge. Living with progressive MS is even more of a challenge.

The positive thinker adopts the mantra: "I have MS, it doesn't have me." There are times MS tries to take over our lives. It's as if the disease is an evil entity with a life of its own, but we must make the effort to ensure MS does not dominate. We are still the people we were before MS invaded our bodies. To stay true to the positive mantra, it is more important than ever to work on a healthy quality of life. I am here to tell you Progressive MS does not indicate the end of life. Your life is different, but it is still within your power to shape it.

MS Progressive Types: Primary Progressive and Progressive Relapsing

2009-05-30T23:01:00.000-07:00

In the series of articles on Progressive MS for MS Central section of Health Central, the second one talks about Primary Progressive and Progressive Relapsing. It was published May 20. Here it is --

MS Types – Primary Progressive and Progressive Relapsing

Let's continue looking at characteristics of Progressive MS. I already talked about the different types of MS and focused specifically on Secondary Progressive. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS. Today the focus is on Primary Progressive and Progressive/Relapsing MS.

Remember, most MSers have Relapsing/Remitting MS (55-85%). Only a small minority of MSers have Primary Progressive (10-15%) and Progressive/Relapsing MS (2-5%). There is an information void for these types. That information can be confusing to the patients, and maybe even to the doctors who see so few cases compared to the other types.

MS Progressive Types: Secondary Progressive

2009-05-28T02:00:00.000-07:00

In the series of articles on Progressive MS for MS Central section of Health Central, the second one talks about Secondary Progressive. It was published May 11. Here it is --

MS Progressive Types: Secondary Progressive

Secondary Progressive MS is the advanced course of Relapsing/Remitting MS. I recently talked about the different types of MS. Now I am looking at the characteristics of Progressive MS. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS.

First, Let's take a quick look at what it means to have Progressive or Chronic Progressive MS. Most MSers have Relapsing/Remitting MS (RRMS), so that is the type most people are likely to know a little about. Because the majority of MSers have RRMS, most information, including online articles and blogs, talks about RRMS. If a type is not specified, it is probably about RRMS. However, that leaves a void where Progressive MS is concerned. Because there is little information, many people do not know about Progressive MS, and that includes MSers.

Multiple Sclerosis - What Type Are You?

2009-05-25T23:24:00.000-07:00

I have started writing a series of articles on Progressive MS for MS Central section of Health Central. The first article talks about the types of MS and their various labels. It was published May 4. Here it is --

Multiple Sclerosis - What Type Are You?

"Rose is a rose is a rose." ~ Gertrude Stein

A rose is a rose, but can we say MS is MS? After all, MS affects the autoimmune central nervous system, and that is true for every person who has MS. But after that it gets a bit murkey.

Just as a rose is identified by characteristics such as color, size and fragrance, so is each person's MS symptoms unique based on clusters, reactions, time lines, the course of the disease and any number of other idiosyncrasies. So yes, MS is MS, but not exactly. There are different categories or types of MS that provide us with some degree of understanding why symptoms of people with MS differ so greatly.

World MS Day

2009-05-21T03:23:00.000-07:00

Did you register yet? Join the world MS Movement. I did!

World MS Day is May 27. It was established by the MS International Federation and scheduled for the last Wednesday in May for future years. Register as an individual who has MS, who has a friend or family member with MS, or a group as a member of the MS Movement.

You can also register an event if you are planning an observation or you can donate to help.

Look at their map to see events near you or even other people who have registered.

technorati tags: worldmsday, msif, downthemspath,

What's the Dumbest Thing You Ever Heard?

2009-05-10T15:01:00.000-07:00

Almost every disease or condition has an annual awareness campaign or a walk to raise funds. I know MS does. There are news articles, friends telling friends, and even television coverage. So much information is shared, yet we continue to walk and campaign to raise awareness. Hasn't the public learned enough yet?

Well apparently not. Julie Stachowiak found a survey by the UK MS Society to see how much the public knows about MS. Almost half - 40% - could not name even one symptom! Many confused MS with another condition all together. There is much left to learn.

Julie continues with a link to her previous post when she asked MSers about the dumbest thing people have said to them about their MS. These are good. Sadly, they are also familiar. Read them here.

I can relate. As I read through the comments, I thought of a couple I had heard.

The week I was diagnosed, before I had a chance to make plans, a coworker asked me how long I planned to work. I told him I would probably go home around 5:30.
When I thanked a woman for opening the door for my scooter and me, she said, "I wish I had one of those [scooter]. Sometimes I'm lazy, too." LAZY? LAZY, TOO?

Somehow, I think other MSers have heard things just as silly or insulting. Insensitive or thoughtless comments and questions are not exclusive to MS.

What have you heard?

technorati tags: , downthemspath, ms, multiplesclerosis, msawareness, juliestachowiak, ukmssociety, mssurvey, vicki

Worst MS Symptom

2009-04-12T14:47:00.000-07:00

MerelyMe stretches me sometimes. This time she asked about the worst MS symptom and how I cope. My answer was a bit lengthy so I'll share it here. Sorry MerelyMe. To read other answers, check here.

Hmm. The worst?

Trouble walking seems to be a big one. I considered that. I resisted for a long time easing into a chair part time -- that is a life-changing move. When I finally got my Amigo scooter, I wondered why I didn’t do that sooner. For years I studied dance, including ballet, and preferred walking to driving, so I don’t say this lightly. It is not fair, it is not easy, it does take a grief process, and I would never wish it for anyone, but not walking is manageable and a wheelchair is better than falling.

I thought about another symptom,Trigeminal neuralgia (TN). TN is a face pain considered by the medical community to be one of the most painful, if not the very most painful, of pains, so it must be close to the top of the list of worst symptoms. But mine usually doesn’t last too long, and it has been dormant for several months now, so I won’t select that one as the worst either.

I think the worst MS symptom is its unpredictability. Many of us experience the unexpected awkward gait, not walking at all, not driving, shooting pains, sudden tiredness or any of the many other symptoms and the social, emotional and psychological problems that come with them. I have found that makes planning with certainty difficult at best. It interferes with socializing and especially individual relationships just we need them most. Relying on someone else for basic, daily, or even for personal needs erodes or shatters a suddenly fragile self image. when it most needs to be strong.

Yes, I think unpredictability is the worst symptom, but it can be managed, too. Learning to deal with and manage unexpected turns whenever they may emerge tends to make us stronger and more flexible for the next unwelcome turn of events. It is a constant struggle with each active symptom being the worst one, replaced by a new one or an old one revisiting. Again, it is unfair and it is not easy. Each new symptom flareup becomes a new accomplishment, building strength with experience. Unpredictable MS requires us to be vigilant, aware of our abilities at any given time, learn to deal with numerous possible problems in our own way. We realize it is not our fault, it is not under our control, we accept that our lives have changed, and we go on with gratitude for what we can do.

technorati tags: mssymptoms, multiplesclerosissymptoms, downthemspath

MS and Wheelchair Exercising

2009-03-31T13:34:00.000-07:00

Movement is a medicine for creating change in
a person's physical, emotional, and mental states.
~ Carol Welch

My online friend Merely Me asked me how I exercise from a wheelchair. I thought about it for awhile, then wrote a response. She added it to responses from two upright MSers here. I can talk only about exercise from a chair.

Being in a chair full time means there is limited movement. What does movement have to do with MS? The National MS Society (NMSS) reminds us that MS steals movement from us all. I have secondary progressive MS, and as a result I have been progressively losing my ability to move. How can I slow that loss?

Here is what NMSS has to say about exercise. A wheelchair adds another factor, but for some it seems hardly a handicap.

(read more)

Be sure to check Merely Me's article -- MS Community and Exercising -- where she talks about more than wheelchair exercising.

technorati tags: , DowntheMSPath, disability, disaboom, health, ms, wheeler, wheelchair, multiplesclerosis, mstreatment, qualityoflife, positiveattitude, independence, attitude, joyoflife, MSAwareness, wheelchairexercising,

I Miss My Mother

2009-03-26T00:53:00.000-07:00

About 15 years ago, my mother suggested she and I take a cruise ship to the Bahamas. It sounded like fun and I agreed. My MS put me in a wheelchair, but she could push me, so off we went. The weather was rough, and once on the ship, the choppy waters exaggerated the ship's rocking back and forth. Many of the passengers were feeling sick, my mother among the worse. She spent much of her time curled up on the floor under a spiral staircase. We were having the cruise of a lifetime!

Mother felt so badly because she intended to help me on our vacation. Instead, she was the one who needed help. I was just fine -- the waves did not affect me, perhaps because I was in the wheelchair.

The Poetry Is in the Pity - Wilfred Owen (Mar 18, 1893-Nov 4, 1918)

2009-03-18T18:55:00.000-07:00

His topic was war, specifically the Great War, and the poem that touched me was about that war. World War I was waged long before many of the technological advances that help level the field for people with disabilities today. Facing disability was a different story then.

Wilfred Owen was born on this date in 1893. In his poem, "Disabled," he tells the story of a young man who lied about his age so he could fight in the war. Wearing the uniform sounded glamorous He was just a kid, trying to impress a girl and his mates, not understanding what it really meant to go to war. Ah, the innocence of proud youth, torn from him in one short moment:

"There was an artist silly for his face,
For it was younger than his youth, last year.
Now, he is old;"

Is Nutrition the Answer?

2009-03-12T12:36:00.000-07:00

Take a bite. What are you thinking? How much thought goes into your daily diet? How do you feel? Does the food you eat make you feel better? Is it just comfort food, or actually healthy food? It's time to think about these things because March is National Nutrition Awareness Month.

So, does the food we eat make us healthier? What is the role of diet in health care? At the very least, a good diet adds to good health and a healthy outlook. For some conditions and certain diseases, healthy eating is actually an alternate treatment option.

2009 Charcot Award Winner

2009-03-05T13:42:00.000-08:00

Professor John Prineas of the University of Sydney received the 2009 Charcot Award. It was awarded by MSIF in recognition for his "life-time contribution to the world of MS." Read more about Prof. Prineas and the Charcot Award. Scroll down to see the list of previous winners.

This is MS Awareness Week (Mar. 2 - 9). Prof. Prineas provided evidence that myelin could be repaired and challenged traditional MS concepts. His work spanned decades as he collaborated "with colleagues on a truly global scale."

Thank you Prof. Prineas, and Congratulations.

technorati tags: downthemspath, charcotaward, msif, uiversityofsydney, professorjohnprineas, ms, multiplesclerosis, msresearch

March Is My Month

2009-03-03T12:59:00.000-08:00

March is my month. Well, actually, it is National Multiple Sclerosis Education and Awareness Month. MS has totally changed the direction of my life, and friends and family and the public at large do not understand. There are so many things I do not know either, so March is my month. In addition, March 2 - 9 is MS Awareness Week. The National MS Society (NMSS) recognizes companies for boosting the movement’s visibility during this week.

Why do we need awareness? Although many people have heard of MS, most people do not know much about it. I read in the current issue of Ability magazine* about one man's experience with an ophthalmologist who had misconceptions. The doctor, checking Charlie's optic neuritis, told him he had MS so he was dying. Charlie was stunned.

Bill Cullen, Game Show Master

2009-02-25T03:19:00.000-08:00

watch game shows to keep my mind active. I have watched quite a few different ones over the years, and I have found some game show hosts that I like more than others. One of my favorites is Bill Cullen (Feb, 18, 1920 - Nov. 7, 1990). Last week was the anniversary of his birth.

Bill Cullen was usually positioned behind the podium as the show opened instead of running out in the beginning like most game show hosts. He had a disability, an awkward gait, as the result of polio as a child, but he was not disabled. That was evident by his long career beginning with radio game shows in the 40's and ending in the 1980's. He hosted 23 game shows -- including the original Price Is Right -- and served on panels and as a guest celebrity contestant. He died in 1990.

(read more)

2009-02-14T12:24:00.001-08:00

Everybody Wants a Valentine

2009-02-11T12:47:00.000-08:00

Image via Wikipedia

February is Creative Romance Month. It peaks in the middle with Valentines Day, the day when lovers express their love for each other. Everyone wants to be loved. In fact, it has been scientifically proven we actually need love, and there are many reasons why we love. At this time of year, due largely to seasonal commercialism, everybody wants a valentine.

Remember in elementary school when you took a card for everyone in your class and you knew everyone in class would give you a card, too? You still took special pains to select just the right card for that one special classmate. And then you went through the cards hoping your chosen person did the same thing for you. Valentines Day - when lovers express their love, when children express crushes with little cards. I remember one year, however, the teacher suggested we give valentines to just that special classmate. My mother said, "No, give one to each of your classmates." I was glad she did, because I remember a few classmates held only my valentine. My mother taught me generosity and compassion. Everybody wants a valentine, don't they?

The Value of Caring

2009-02-04T20:20:00.000-08:00

How much is $375 Billion and why do we care?

$375B is more than $1000 for every person in the United States. It is almost half of the the $800 Billion figure of the Troubled Asset Relief Program (TARP) already passed by Congress last year and being paid to banks, financial institutions, and the Big Three automotive companies.

Focusing on family caregivers, $375B is an average figure provided by the AARP Public Policy Institute in a report called Valuing the Invaluable: The Economic Value of Family Caregiving, Update 2008. $375B is based on the middle estimate of the number of caregivers if they were paid the middle estimated hourly wage of 2008. The report clearly states that the number of caregivers is increasing, and of course, they are NOT being paid.

(read more)

Online Health Networks getting Bigger!

2009-01-29T02:27:00.000-08:00

Take a look at everydayHealth, a network dedicated to good health. Called the preeminent online health destination, everydayHealth was enhanced in October 2008 by a merger of Revolution Health and Waterfront Media.

This site focuses on maintaining good health, but there are articles and groups that support specific conditions and diseases as well. Check out the Revolution Health Multiple Sclerosis Support.

everydayHealth provides health information from A to Z, including active discussions, expert advice, and even recipes. There is so much to take in, but take your time. There is more.

Wellsphere is "combining forces" with Health Central., a leading publisher of online health

In a joint message from Christopher M. Schroeder, CEO of HealthCentral and Ron Gutman, Founder and CEO of Wellsphere, they said, "Our communities offer unparalleled insight, practical advice, and inspiration for people who want to live better and fuller lives."

Look at the tips on fashion recently posted by MerelyMe in the Health Center's Multiple Sclerosis Central. Browse through this section and you will find columns written by other favorites such as Lisa Emrich and Mandy Crest.

technorati tags: wellsphere, healthcentral, revolutionhealth, waterfrontmedia, everydayhealth, healthnetworks, downthemspath

January Health Observances

2009-01-28T14:42:00.000-08:00

The month of January has important health observances and I want to talk abut two of them.
January is National Glaucoma Awareness Month, sponsored by Prevent Blindness America.

Glaucoma? Many of us know people who have had glaucoma without having a disability. It cannot be cured, but it is often manageable. There are several treatments including eye drops, oral medication, and surgery. My uncle had surgery and has enjoyed good sight for years now. So if there are treatments, why is an awareness month needed?
(read more about glaucoma awareness
and preventing birth defects)

technorati tags: DownthMSPath, disability, health, healthcare, parenting, children, parents, Vicki'sblog, blindness, attitude, joyoflife, glaucoma, birthdefects, eyecare, vision,

MS and Depression?

2009-01-24T01:02:00.000-08:00

If you have MS, or even another chronic disease, chances are you are familiar with depression. Merely Me interviewed a psychologist about the relationship between biology and psychology when a chronic illness is involved.

Read her interview. As usual, she did a good job.

technorati tags: , merelyme, msanddepression, downthemspath

It's All in the Attitude

2009-01-22T01:30:00.000-08:00

"Ability is what you're capable of doing.

Motivation determines what you do.

Attitude determines how well you do it."

~ Lou Holtz (January6, 1937 - )

My particular disability is Multiple Sclerosis, however, MS did not take away all of my abilities. I cannot walk, but I can guide my chair. I can no longer work full time, but I can earn a little and manage my finances. MS has not yet tampered with my memory or cognitive abilities, so I can still think and write and enjoy. I am a person with a disability, but I am also a person with abilities. I should take advantage of them.

My Wheelchair Needs Brakes!

2009-01-15T02:10:00.000-08:00

Let's look at the wheelchair wildly careening down the hill because the caregiver's hand accidently slipped. There is a solution, and it's surprising no one thought of it before.

It's as simple as customizing a wheelchair with bicycle brakes so the pusher has control. Veech Breakwell received an inventor's award, and he expects to have brake kits available for sale before too long.

But not so fast! Read the comments where a former caregiver and potential wheeler voices his objections to that method of managing an occupied wheelchair on an incline. At any rate, be careful wheelers, when traveling in hilly terrain!

technorati tags: , downthemspath, wheelchairsonhills, wheelchairbrakes

Learning from the Innocent

2009-01-13T18:48:00.000-08:00

I can no longer walk. My grandchildren have known me only in my Amigo scooter. When the grandkids were very young, each one of them, in their own time and in their own way, asked me why I couldn't walk. I did my best to explain to them about how MS results in less function. Not easy to explain to children. Not easy for children to understand.

Taylor, barely more than a toddler herself, was the first to offer to teach me to walk. She was so sure she could teach me, because it really isn't too difficult. She learned to walk, so surely I could learn, too, if only I would try. She wasn't one to give up, and we went through that scenario several times.

(read more)

technorati tags: (read, more), , downthemspath, children, ms, multiplesclerosis,

MS Without Borders

2009-01-05T19:57:00.000-08:00

Life is not easy with MS. It is even more difficult to have MS in the wrong country. MS is such a personal disease, MSers may be unlikely to stop and look at the bigger picture. How is the world coping with MS? How are various countries researching, treating and providing diagnoses?

Multiple Sclerosis does not discriminate based on geographic boundaries, but treatment, management, and even awareness relies strongly on national ties. In one country, an MSer has access to state-of-the-art diagnostics, doctors and disease-modifying treatments. In another neighboring country, an MSer does not even know what is happening and has no idea where to go or what to ask. Some doctors do not have diagnostic tools or training, and there are few treatments available anyway. The difference is circumstance of birth country. MS is everywhere, but managing MS differs drastically in different countries.

Happy New Year Resolutions

2008-12-30T14:47:00.000-08:00

It is time again to list wishes and make promises for a new beginning.

Wait. I've done this before. Sometimes I've had level of success, but sometimes failure rears its ugly head. How disappointing to review my list and find intentions that have been forgotten or gone astray. This is a productive exercise only if I actually make an honest effort at fulfilling each item on the list. I think I did pretty well in 2008 with the resolutions that I shared in last year's post. There has to be more though. Maybe I need a new way to make resolutions. I have to remember to allow my resolutions to be flexible so I am able to keep up with them.

(read more)

technorati tags: , laughter, positiveattitude, downthemspath, newyearsresolutions

Dangerous Disability Comedy

2008-12-29T14:35:00.000-08:00

It's happening again. A character on a new TV show has a disability.

Megan Mullally -- you might remember her from Will and Grace -- has MS. Well, you know how MS is. It is so volatile, and therefore difficult to diagnose, so it is also easy to deny. According to Megan's character, she has something "akin to MS." She plays a hospital administrator who relies on crutches for mobility. It sounds as if we are being set up to see some outrageous humor including pratfalls -- just what disability awareness needs!

"Children's Hospital" was written by and stars Rob Corddry who was a writer with The Daily Show, so we know he can be outside the box. Corddry's character is a doctor in clown make-up who uses humor as the best medicine. If we use The Daily Show as an example, we can expect the show to be built around outrageous humor.

Humor with a character defined by mobility issues may result in comedy of questionable style. Perhaps they should precede each episode with a warning that reminds us the humor is in the situation rather than the disability. Otherwise, it is happening again where a disability has been put on view as a laughter trigger.

Maybe "Children's Hospital" rises above that bullying and will be presented in a respectable style. Megan's previous series handled another hot topic -- gay life -- and it was presented well. Oh, wouldn't that be nice? I look forward to it.

NOTE: I am adding this note to ensure I am clear. I haven't seen the program yet, but I plan to watch, and I hope it is good. I applaud the use of people with disabilities in programs.

We all need humor. If hot topics were off limits, then there would be no topics. The disability community needs to be included in funny shows as well as dramatic shows and commercials -- just like everyone else.

Megan has proven to be a favorite comedy actress. The tragedy would be if the show makes fun of the character because of the condition "akin to multiple sclerosis." However it is done, maybe it will instigate talk. There's nothing wrong with talk.

technorati tags: , downthemspath, meganmullally, robcorddry, disabilityhumor

There Is Always Hope

2008-12-26T01:45:00.000-08:00

At least Chelsea has hope.

Here is another condition that affects young people and has no cure. I never heard of Lafora before finding this link in a blog post written by a fellow MSer. Michael has written about New Year's Resolutions that could lead to new hope for us all.

Learn more about Lafora Disease, read Michael's resolutions, and think about some of your own.

technorati tags: , ladoradisease, newyearsresolutions, Vicki'sBlog, hope

Merry Christmas

2008-12-25T16:15:00.000-08:00

For the Christmas Tree, Garry used IFL Labs software for the fractal and Jasc animation software for the animation.

technorati tags: christmasanimation, vicki'sblog

The Meaning of Christmas

2008-12-23T13:15:00.000-08:00

For centuries men have kept an appointment with Christmas.

Christmas means fellowship, feasting, giving and receiving,
a time of good cheer, home. ~ W.J. Ronald Tucker

Christmas is upon us, with all the Christian and secular traditions that mean something different to everyone. What does it mean and how is it different when a disability is involved?

To find out what Christmas means to different people, I posed two open questions on Yahoo! Answers tagged for the People With Disability Group. One question asked for a least favorite thing, and the other asked for a favorite thing about Christmas. The answers were generally things I expected but with a few exceptions.

Blue Christmas

2008-12-17T13:33:00.000-08:00

Probably the reason we all go so haywire at Christmas time
with the endless unrestrained and often silly buying of gifts
is that we don’t quite know how to put our love into words.
~ Harlan Miller

As Christmas nears, the Christian community prepares for the celebration of the birth of Christianity. In the United States, at least, a large part of Society recognizes Christmas as a time for holidays, for family closeness and the warmth of friendship. It is a time for presents, for embracing all of humanity through faith, hope, and charity. Isn't it wonderful?

Christmas should be the happiest time of the year. Just because it should be doesn't mean it is.

Searching for a Cure

2008-12-13T13:31:00.000-08:00

I was asked not long ago if I thought there would be an MS cure found in my lifetime. I said there were more MS researchers than ever before.

Nearly 100 young researchers sponsored by the National MS Society attended the NMSS 2008 national convention. Here is the story. There is always hope, especially when so many young minds are working on it.

technorati tags: , downthemspath, msresearch, ms, multiplesclerosis

Look at Me! Look at Me!

2008-12-11T01:04:00.000-08:00

MerelyMe has started an ambitious project of interviewing MSers and posting the results on her site at her Health Central site. She publishes a new interview every couple of weeks, and this week she chose me -- take a look.

Be sure to read through The Multiple Sclerosis Tapestry which includes several interviews, each different, yet each the same. We feel a certain comaraderie and at the same time realize not only is each person unique, but each person's MS is unique in the grouping and manifestation of various symptoms. The other posts are varied and generally good reads, just like the blog where I first "met" her.

Belated birthday wishes

Now, look at me again -- Jennifer Thieme of Amigo Mob ility International re-published an article I posted earlier in anticipation of the possibly hectic holiday season. Now that we are deep in the midst of those holidays, it might be a good time to re-visit this one and take time to relax.

Jennifer publishes Friendly Wheels, Amigo's e-newsletter that highlights Amigo owners of all types. It is often interesting and always fun. While you are there, look around the site. You might just see something you like. Okay. That's enough of me for now.

technorati tags: downthemspath, vicki, ms, multiplesclerosis, mainterviews, blogging, msblogs, scooters, amigo, amigomobility

MS is a Family Affair

2008-12-10T11:30:00.000-08:00

I was lucky when I was diagnosed with MS. My boys were teenagers in high school, old enough to understand, and old enough to help with things. I met an MSer with very young children who was lucky enough to have family in town as well as a helping husband, but I still wondered how she did it.

When children or teenagers have a parent with MS or have MS themselves, they have the same questions as adults, and parents may not know how to answer. They often turn to the Internet for answers. Here is a young mother of two young children who was diagnosed ten years ago. She writes about Multiple Sclerosis -- Real life stories & Issues. It's worth a visit. Amanda is 26 and has 4 children! Her blog My Complications rants about daily life. She links to a Progressive MS bulletin board she helps manage on her sidebar along with a link to her recommendation of an online support group. And let’s not forget that men get MS, too. WhiteLightning is the blog of a young father, who writes in a fun story-telling style.My admiration goes out to you.

I regularly read Living Life as a Snowflake, a blog written by an MSer mom whose son compared MS with a snowflake: "...all different, no two are the same and...all special in (her) own way." What a lovely description. How lucky she is to have her son understand that well. She must have done a good job!

Raising children is not ever easy, but with a chronic disease it seems impossible. MS affects the MSer, but it doesn't stop there.

RRMS Trial Studies Enrolling Now

2008-12-01T15:18:00.000-08:00

Here is notice of MS trials. This is verbatim from Brenna's message:

New MS Clinical Trial Enrolling

My name is Brenna Fitzgerald and I’m writing to you from Fleishman-Hillard, a communications company, contracted to create awareness regarding two clinical research studies in multiple sclerosis. As your blog chronicles your journey with multiple sclerosis, I wanted to let you and your readers know about two global clinical research studies that are seeking adults with relapsing-remitting MS.

The Comparison of Alemtuzumab and Rebif^® Efficacy in Multiple Sclerosis (CAREMS^SM) I and II studies are designed to determine the safety and effectiveness of the investigational drug alemtuzumab as compared to the FDA-approved therapy Rebif (interferon beta-1a), in adults with relapsing-remitting multiple sclerosis. The studies will look for differences between these drugs on the progression of disability and in the number of relapses (flare-ups) and brain lesions caused by MS. The studies also will compare the side effects of the drugs and monitor for risks during and after treatment.

Current therapies require frequent, long-term administration. When compared with no treatment, they have been shown to reduce the number of relapses, slow the formation of MS associated lesions in the brain, and impact progression of disability. A need still exists for more effective therapies to further slow the progression of disability.

Studies measuring investigational treatments against standards of care are advancing knowledge of these drugs on the disabling effects of MS, which may impact the patient's quality of life. Every patient in the CARE-MS studies will receive active treatment; there is no placebo. Participation in the CARE-MS trials may offer participants the opportunity to help advance research in the treatment of MS while taking a role in their healthcare.

Alemtuzumab, Rebif, the annual dose of steroids, and study-required procedures are provided at no cost.

To be eligible to participate in the studies, volunteers must be between the ages of 18 and 50 (CARE-MS I) or 18 and 55 (CARE-MS II) and meet specific criteria, including having a diagnosis of RRMS and first experiencing MS symptoms within the last 5 years (CARE-MS I) or 10 years (CARE-MS II).

For more information about the studies, please call 1-503-432-4725 or toll-free 1-888-404–MS-CARE (United States only) or visit www.CARE-MS.com. There, you will find additional information about the studies and an online prescreener, which will allow people with RRMS to determine if they meet initial eligibility requirements.

If you find this information useful, I hope you will consider sharing it with your readers and posting 1-888-404–MS-CARE and a link to www.CARE-MS.com on your blog.

Vicki, thanks for your time and consideration. Please feel free to contact me at brenna.fitzgerald@fleishman.com if you have any questions or would like to discuss the studies.

Best regards,

Brenna Fitzgerald

brenna.fitzgerald@fleishman.com

Genzyme Corporation is the sponsor of these studies. Bayer Schering Pharma contributed to the funding of the studies.

technorati tags: rrms, trialenrollment

World AIDS Day

2008-12-01T00:14:00.000-08:00

When America first became aware of AIDS in the 80s, it was scary for all.

Back in those days, most of my friends did not know anyone with the disease. Only people far away from our everyday lives had it and died from it, but then times changed. More and more people were dying under mysterious circumstances and amid rumors. The sexual revolution that released us from rigid moral restrictions was being trumped by fear of being exposed to the dreaded AIDS. Sex wasn't so easy any more.

AIDS, like every other chronic disease, touches the patients, their family, friends, and it doesn't ever let go.

Christmas Shopping Then and Now

2008-11-26T13:24:00.000-08:00

There was a time, a lifetime ago, when I was ready for Christmas before Thanksgiving. As a single mother with two boys, I was always on the look-out for bargains. I bought things throughout the year, and my brother was overseas so I had to have packages wrapped and mailed long before Thanksgiving was even on the horizon.

When the Christmas season was in full swing and the malls were all decorated, I had already finished my Christmas shopping. I would visit the malls and they were so beautiful and now so memorable. I wasn't desperately searching for gifts so I wasn't rushed. I could appreciate the imaginations and budgets of the stores' talented decorators. Fairyland was all around. Carols were playing in the background, families were shopping, laughing, arguing, both kids and adults were making decisions, rushing from store to store. One mall's ice rink displayed skating talents and costumes and more laughter. I live in the Dallas area so I could enjoy Neiman Marcus at its best. Christmas was in bloom. What a great way to share the feeling of Christmas.

Epstein-Barr -- Rumor or Fact?

2008-11-25T12:38:00.001-08:00

We have heard for years that there may be a connection between Epstein-Barr (EBV) and MS.

Most of us, that is 90% of the general population, carry EBV-infected cells. Researchers from Australia's University of Queensland say MSers are less effective at fighting EBV. There is also a relationship between the strength of a person's immune system and the age MS develops.

Controlling EBV may result in fewer cases of MS. That sounds like promising news to me!

technorati tags: http://www.healthcentral.com/multiple-sclerosis/news-276230-98.html?ic=6080

My Tips for a Stress-Free Holiday

2008-11-18T19:22:00.000-08:00

The Holiday Season is upon us, and with it comes stress. Here are my tips for happy holidays and high quality of life every other day, too:

Start with a positive attitude
I think a positive attitude is the best tool to enhance every day. Winston Churchill agreed: "Attitude is a little thing that makes a big difference." We all have control over our own attitude. We may as well take advantage of it by having a good one.
Be grateful
Sometimes it's difficult, but you may have to look in a different way or a different direction. Be grateful for friends and family, for opportunities that are yet to be and for memories or dreams.
Practice Relaxation
To start each day, add three deep breaths to your morning routine. Not quick gasps, but slow deep, full breaths.
Practice Moderation
Dinner, Gifts, Parties -- You know where you can cut back and where you cannot. Choose what you can do and want to do, and do it with gusto.
Include yourself on the gift list
This can cost much or little, or nothing at all. It can be time for yourself, a trinket that makes you smile, or that special something you always wanted. It can even be a massage that will help you relax during this stressful time.
Smile and Enjoy the Spirit of the Season
The spirit of the season is what you want it to be. Festive music, laughing children, joy to the world. Enjoy it.

Stress that comes with holidays is not healthy. It's often a trigger for chronic conditions to flare. I know it is for MS. I have been through this before. Apparently there are three main trigger points for holiday stress: Relationships, Finances and Physical Demands. The Mayo Clinic offers 12 tips for coping with the holiday stress. Mayo Clinic's tactical tips are good for these days, and they are good for the rest of the year, too.

My Amigo

2008-11-12T13:17:00.000-08:00

On November 12, 1968, Al Thieme opened Amigo Mobility and revolutionized the future of mobility forever. Now Amigo is international, offering mobility to the world with power operated vehicles (POV).

I bought my first Amigo in 2003, and it certainly opened my future, making life easier and less of a struggle. Suddenly I felt as if my independence had been granted again, and my future was once more full of possibilities. To know more about Amigo, sign up for Friendly Wheels, an e-newsletter that tells personal stories and updates on the product.

Thank you, Al.

technorati tags: , downthemspath, althieme, amigo, amigomobility, amigointernational, pov

Honoring Veterans Today

2008-11-11T00:02:00.000-08:00

Image via Wikipedia

Thank you for your service.

Veterans Day was established as Armistice Day to celebrate the end of World War I, the war to end all wars. Since 1954, we have observed it as a national holiday, Veterans Day, honoring the men and women willing to serve and defend America in the armed forces and dedicated to the cause of world peace. Veterans Day has come to represent those who did not come home. Now it is more.

(read more)

technorati tags: downthemwpath, disability, veteransday, ms, grjenkin,

Technology for Disability -- Something for Everyone

2008-11-08T17:01:00.000-08:00

The test pilot crashed, but he survived, barely. The colonel was a former astronaut, a national hero, and the accident promised to leave him severely disabled. However, it was the mid-seventies and science was advanced enough to not only save his life but to use electronic or mechanical parts that would do more than make him feel "good as new." It would actually give him extraordinary strength, almost like super-powers. The only problem was the surgery to save this hero would cost $6M.

The story of Steve Austin, The Six Million Dollar Man was a fictional whisper hinting that science had the secrets that could correct even the most severe injuries. What was not fictional was the high cost. Has science taken steps to fulfill that fantastic promise?

Caring and Compassion

2008-11-01T18:33:00.000-07:00

If you want others to be happy, practice compassion.
If you want to be happy, practice compassion. ~ Dalai Lama (1935 - present)

Often a person becomes a caregiver by circumstance, when a baby is born with a disability, a parent develops Alzheimer's, an adult child comes home from war or a fully-able person develops a disabling condition. "More than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year, and 44% of them are men."* Being thrown into this unfamiliar activity of caring for a family member, whether it be full- or part-time, brings up a multitude of questions and feelings.

What needs to be done, and how should it be done? There are classes and tip lists available. The person you are suddenly caring for is still your baby, your parent, child or loved one who needs help with mobility, dementia, errands or meals. "The value of the services family caregivers provide for 'free' is estimated to be $257 billion a year. That is twice as much as is actually spent on home care and nursing home services."* The National Family Care Association has an even higher estimate. Wow.

Humor and Disability

2008-10-28T13:05:00.000-07:00

Humor is a serious thing. I like to think of it as one of our greatest earliest natural resources, which must be preserved at all cost.
James Thurber, American writer (1894-1961)

Is there anything funny about disability? Not the disability itself and not necessarily the disabled person, but the situations we find ourselves in are often funny, and everybody often laughs at the same things.

Let's look at the wheelchair careening down a slope. Funny or frightening? What if it's a car, kids in a wagon, someone skiing or even someone rolling in a tire. This gag is a staple used over and over in movies and sitcoms. A Psychology Today article, What's Your Humor Style, mentions that the ancient Greeks thought humor was aggressive, and this particular gag certainly seems to be so. The article tells us this is only one type of humor.

A Few More Words from A to Z

2008-10-20T00:57:00.000-07:00

A couple of weeks ago, I posted a Disability Alphabet. I had made a goal of emphasizing only positive words, and I went through the letters, coming up with words that came to my mind. When completed, I then asked: “In a word, what does disability mean to you?”

There were some comments, some with submitted words, and some words plucked from your prose. I knew I missed some!

Tim's Disaboom Weekly newsletter started me off with one of my favorite tools -- a quote. Anyone who reads my blogs knows I frequently use quotes. So many people have said so many things better than I could ever say them. Tim's offering was “Words are the voice of the heart.” Confucius put it so nicely.

Now let's look at some additional word suggestions received from others --

(read more)

technorati tags: DowntheMSPath, disability, health, ms, humor, ada, positiveattitude, joyoflife

Good Intentions and Worst Words

2008-10-11T14:04:00.000-07:00

Language is a hot button in the disability community. We have words that can be used among ourselves, but we prefer able-bodied people (ABs) to omit them from their vocabulary. Terms like "crip" and "gimp" and other pet names are bandied about, but we find them especially derogatory if someone outside our group dares to speak their names.

In fact, most people are squeamish about certain words, but there are no definitive guidelines for determining when it is okay and when not to use such language. Often words used in complete innocence are offensive. Do we need a glossary of unacceptable terms? I think the guideline should be to be respectful when talking and not too sensitive when listening.

Ouch! is an online UK magazine about disability sponsored by the BBC. If you are unfamiliar with it, take a look. Ouch! has been exploring language used in reference to disability. In 2003, they assembled a list of the top ten offensive words and asked their readers to vote which were perceived as most offensive. Ouch! revisited that exercise and published the results in August. Responders were asked to voluntarily identify themselves as disabled or not.

Here is a data visualization in Swivel.com of the results:

2053 votes cast: 73.9% non-disabled 18.3% disabled 7.6% "rather not say"
Click here to see relative values by percentage.

Survey Request

2008-10-09T00:59:00.000-07:00

Kathryn M. Martin, Public Affairs/Patient Advocacy Manager at MediciGlobal, sent a message and asked that I put this in my blog:

"We're doing some research to understand the journey people might take from their first symptom(s) of MS, to the time they visit a doctor, and eventually if/when they begin treatment options. If you have about 5 minutes to spare, we would really appreciate it if you could take this survey to tell us about your journey. It's anonymous so no identifying information will be collected."

I took the survey. The questions were simple, anonymous as promised, and took only a few minutes as promised. If you would like to participate, click here.

technorati tags: mediciglobal, msresearch, downthemspath, mssurvey

Share Your Art and Writing

2008-10-05T00:41:00.000-07:00

Are you an artist with work to share? Here are two venues:

The MS Foundation is a service based non-profit organization the helps MSers especially focusing on improving quality of life. The website has developed a new forum, "Voices," designed for authors, poets, writers and photographers to share their work.

Tonight I read a short story, a poem, and saw pictures of a koala, lorikeets, baby platypuses, and a baby possum with burned "hands." Cute, cute, cute.

Anyone touched by MS can offer work, MSers, friends and family. Check topics in "To Our Visitors" the read "Forum Rules" to get started.

The second venue is Kaleidoscope Magazine that explores "the Experience of Disability through Literature and the Fine Arts." They publish fiction, non-fiction, book reviews, and visual arts of all kinds.

See publishing and payment information, or subscribe to the twice-a-year magazine.

Enjoy!

technorati tags: art, photography, writing, magazine, msartists, downthemspath

Disability from A to Z

2008-10-03T19:52:00.001-07:00

I decided to make a Disability Alphabet, and I made a goal of emphasizing only positive words. I was inspired by Missy's ABC's of Caring Game, where she started a challenge asking readers to submit a word about care giving for each letter. My disability alphabet took me through a kaleidoscope of words. Here are my words. Suggestions?

Attitude
"The only disability in life is a bad attitude." ~ Scott Hamilton

The letter A could stand for so many things that are important to the person with a disability. However, I chose Attitude. A positive attitude allows each of us to accept ourselves and enhances each day. Besides, we can control our attitude and keep it positive.

Other good words: Acceptance, Accessibility, Accomplishment, Action, Answers and Assurance

(read more)

technorati tags: downthemspath, positiveattitude, disability,

Driving To Independence

2008-09-30T14:15:00.000-07:00

Independence is happiness. ~ Susan B. Anthony

I worked most of my adult life to become independent. It has always been important for me to take care of myself. My parents taught me well. Then MS joined me on my Life Journey and put a chink in my armor. Life changed and so did my independence. I was going to need help.

Now, I know everyone needs help at one time or another, and not everyone is able to ask for it. Some people have difficulty even accepting help that is offered, let alone asking for it.

I remember when I got my drivers' license at 14, thanks to Louisiana. It didn't occur to me at the time, but that was my first step toward independence. I no longer had to rely on my parents or school buses or friends to go anywhere. In fact, I became the friend who could transport others.

(read more)

technorati tags: driving, independence, downthemspath, positiveattitude

Dancing Wheelers

2008-09-21T00:22:00.000-07:00

Dancing was once a favorite pastime of mine, but I had to give it up when my balance left me. My scooter ensures my only dancing is with my arms and shoulders. However, some people just won't quit.

I wrote an earlier post about bunnymay wand her story about a woman dancing from a chair. She was not actually a wheeler, but she learned while actually living in a wheelchair in Mexico for weeks before the performance. She danced solo on stage.

Here is another one - Deaf Mom wrote about a wheeler who performed ballroom dancing with an upright partner. She has the video and it is certainly worth the visit. Thank you bunnymay and Deaf Mom for these stories that tell us not to give up dancing.

technorati tags: wheelchairdancing, downthemspath

A Memory from the Past

2008-09-21T00:07:00.000-07:00

When I was a child, I saw a young girl in a wheelchair being pushed by a woman I assumed to be her mother. We shared a smile as we passed. I was just a little girl myself, and I related to the girl in the chair because we were about the same age.

An adult nearby -- not someone I knew -- said: "Isn't that a shame? She is so pretty."

(read more)

technorati tags: downthemspath, wheeler, wheelchair, positiveattitude

Wheeling Through Time

2008-09-14T13:16:00.000-07:00

We were watching a DVD of the old TV series Connections the other night. Connections was a documentary series in which James Burke made connections from an early discovery through civilizations and time until it shows up as a magnificent part of modern civilization. It is almost a version of "Six Degrees of Kevin Bacon." As I was watching, I wondered when and where did the wheelchair begin?

I knew a little, but I also knew there had to be more. The earliest reference I found was a wheeled bed in Greece in 530 B.C. I cannot imagine that was very mobile or convenient, especially for visiting friends or shopping. Just five years later, the Chinese put wheels on chairs. The Chinese honor their elders and they appear to honor disability as well, because by the third century they had a "rolling apparatus for the infirmed."* The earliest image of a wheelchair was found incised in stone on a Chinese sarcophagus, but the histories that I found did not credit the Chinese with inventing the wheelchair.

(read more)

technorati tags: DowntheMSPath, disability, disaboom, wheeler, wheelchair, wheelchair, history,

Finding Joy in a Pain-filled Life

2008-09-07T01:56:00.000-07:00

"But pain…seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?" ~ Lois McMaster Bujold, Barrayar, 1991

I always had a very low threshold of pain. Since my MS diagnosis, I am learning, much to my surprise, that I can live with pain and still find joy in life. I am learning to coexist with the scary pain monster.

One day last year, I was happily going through my morning routine, washing my face and brushing my teeth with an electric toothbrush. Suddenly I had a blinding pain. It felt as if I was being electrocuted. There were shocks of lightening bolts jumping through my mouth. I dropped the toothbrush and after what seemed like an eternity, the pain resided. I was shaken, I had trouble understanding and tears were streaming down my face. I did not know what to do next.

Is the Bone Broken?

2008-09-01T23:19:00.000-07:00

Apparently it's not always easy to know if a bone is actually broken. Some are more obvious than others.

In April 2006 I was transferring into the car when I heard a loud POP and my leg hurt really bad. It hurt again each time I moved it. My doctor sent me for an X-ray and MRI. I thought the X-ray would have been enough and the MRI was overkill.

The nurse told me everything was fine and I should go home, so I did. I was home less than half an hour when she called and said I had to go back. There was a fracture after all.

I always thought that was strange. Then I found an article on WebMD that says it may not be so strange after all. Sometimes an X-ray does not even show a fracture. Other tests such as an MRI or CT scan. I know the MRI simplified diagnosing MS and injured athletes often have MRIs, so I should not be surprised. The role of the MRI in diagnosing and identifying problems is expanding.

I was lucky they kept looking at my results after I left. Otherwise I would not have known my leg was actually broken and not merely bruised.

technorati tags: MRI, bonefracture, downthemspath

Sharing the Caring

2008-08-30T21:00:00.000-07:00

We don't understand each other. There are so many things caregivers don't really understand about the very people they are caring for. To be fair, the cared for do not understand many things about their carers either.

When I used a manual wheelchair my mother would push me out of the way, facing toward the wall. I talked to an actor who played a woman in a wheelchair. She told me people on the set often placed her facing the wall, too. What was intended to be helpful was actually seen as thoughtless. Why would we want to sit facing the wall? It felt as if we were just being put aside. Even the actor who was fully capable of walking was pushed aside because she was in a chair.

MS and Vision

2008-08-28T12:46:00.000-07:00

If you have MS, the chances are that you experience some type of vision problem, too. Well, tonight there is a webcast that might answer some questions, or at least shed some light on some vision difficulties.

Healthtalk is sponsoring a webcast called Symptoms of MS: Recognizing and Treating Optic Neuritis tonight at 8:30 EDT. Experts will share how to identify optic neuritis and how to treat it. Sign up now. or go directly to the webcast.

technorati tags: ms, multipltesclerosis, msvision, opticalneuritis, downthemspath

Caring Game

2008-08-27T00:51:00.000-07:00

Caregivers. You know one, or you are one, or you have one. What do they mean to us?

Caring.com provides guidance and gives advice especially for people caring for their elderly or ailing parents. Missy has started a game she calls "The ABC's of care giving." It's easy. Here are her rules:

I will start out with the letter "A" and choose a word that describes something that I associate with care giving. The next person who posts will choose a word starting with "B", the next "C", and so on. There are very few rules in this game. Just do your very best to stay away from anything obscene or offensive. Other than that, go nuts! It can be happy, sad, funny, honest, thoughtful, kind, snarky...whatever. This is our game!

So far there are five entries -

A - Aging
B - Brushing Teeth
C - Crisis Avoidance
D - Disability
E - Energizing

Read the explanations and stories that go with these alphabetic care giving words. Vote if you find a story helpful. Then pick a word or phrase for the next letter and add a thought of your own. Check it out.

technorati tags: caregiving, elderlyparents, downthemspath

Scooter Ban?

2008-08-24T14:00:00.000-07:00

It is not discrimination; rather, it is protecting us. Or so they say . .

A partial ban on scooters and electric wheelchairs on the Metro system in the UK is currently in place due to four incidents where a scooter driver crashed or fell on the tracks.

However, as a spokesperson for the MS Society pointed out, drinking riders have caused many problems on the Metro including falling on the tracks, and no ban against riding drunk is being considered. It sounds like blatant disability discrimination to them!

A complete ban is being considered, and the decision is to be announced Tuesday.

technorati tags: downthemspath, mobilityscooters, ridingthetrainwithscooters, mobilitycarts, ridingthetrainwithcarts, , ridingthetrainwithelectricwheelchairs, disabilitydiscrimination

A Population Tsunami is Coming!

2008-08-23T21:23:00.000-07:00

With the aging of America also comes a redistribution of population segments. Of particular interest is the current disability minority that is moving toward a new majority.

Here is a data visualization of the U.S. population over 50 years of age from 2010 to 2050. Click on the chart to read notes explaining the boxes that mark interesting age group trends.

Looking at U.S. Census population forecasts from 2004, we see an increase of 100% to 300% to all ages over 70 in the years between 2010 and 2035. The Baby Boomers will be introducing the very beginning of this glacial increase in age distribution. It shows the over-80 year old group almost doubling, the 90s quadrupling, and population reaching 100 exceeding a 900% increase by 2050. Public data estimates show that in some U.S. states, there will be more than 20% of the population with disabilities.

Marijuana Updates

2008-08-20T01:30:00.000-07:00

There are some marijuana research results that might be interesting to MSers. Check it out:

The L.A. Times reported research investigating marijuana effects on pain in several conditions and diseases including MS. In one study, nearly half experienced improvement in muscle spasms. Another study showed no objective measures in arm tremors although patients reported feeling improvement.
One study evaluated the "prevalence of cannabis use, related factors, and degree of satisfaction in Spanish patients with multiple sclerosis." Clinical improvement was reported for a subset [about half] of patients, but most of them were "highly motivated for a future medically controlled use."
Disabled Politico, a blog I read, posted about a "new model" that provides benefits without affecting the brain and causing psychotropic effects.

technorati tags: medicalmarijuana, downthemspath, msresearch

Are You Managing?

2008-08-18T13:31:00.000-07:00

WebMD, a health source I rely on, asks how well you are handling your MS. This is not a time to say "Just fine, thanks." They have a short and quick survey to find the answer. Try it. I was surprised at my scores.

It looks as if Pfizer had a hand in developing the survey because Novatrone was mentioned in one of my responses. However, this is not a sales pitch, nor does the information seem slanted. It is simple, basic information with general responses.

technorati tags: pfizer, novatrone, managingmssymptoms, downthemspath

The Pollyanna Attitude

2008-08-18T13:20:00.000-07:00

When you look for the bad in mankind expecting to find it,
you surely will. ~ Abraham Lincoln

Remember Pollyanna? Pollyanna's father gave her a brooch inscribed with Lincoln's quote. It became her life philosophy, but she framed it in a positive light, looking for something to be glad about in every situation. It started when they were very poor and relied on charity. One Christmas, Pollyanna got crutches, and she was disappointed and upset. Her father said she could be glad because it was a reminder that she did not need them! "The Glad Game" became part of her life. It sounds like a wonderful attitude to me.

(read more)

technorati tags: goals, positiveattitude, attitude, haleymills, pollyanna, downthemspath

It's Not About the Door

2008-08-09T23:37:00.000-07:00

Note: A couple of weeks ago I wrote a post on Disaboom about a question I saw on Yahoo!Answers: Why Are Disabled People So Mean? Now usually, a post I write attracts between 0 an 6 comments. I try to respond to everybody, and I have found some other good blogs to read from the commenters. This post generated so many comments I was overwhelmed - 99. Yes, 99! The comments actually became a forum focused not only on mean people, but also on people opening doors for those of us with canes or in wheelchairs. That comment string led to this post. --

It's Not About the Door

Apparently doors are a hot button in the disability world. This story was mentioned in a previous post:
A young man explains that he tried to help a disabled woman by opening the door and was greeted with a dirty look, like maybe he was going to rob her, and certainly with no thanks. He said that had happened before, so he was not going to help any more disabled people.

There were so many comments that the subject turned into a forum. There must be a reason for that. My interest was piqued by the question and the answers, too. Apparently, it was interesting to a bunch of us, with different perspectives and attitudes. Many people shared their own stories, things that happened, what they thought, what they would have done, reactions to other comments. They were enlightening. All of the comments together reflected the make up of our diverse community touched by disability. Comments reflected anger, rudeness, appreciation, rage, disappointment, acceptance, frustration, understanding, a sense of humor and sometimes just explanations. Julianne said, "Within this single conversation, lots of us have commented about how we personally believe we should behave, or what is comfortable for us. Our ideas are very different, and all valid."

Many comments focused on help opening a door.

NMSS Supported Research

2008-08-07T22:56:00.000-07:00

The National Multiple Sclerosis Society (NMSS) supports research. We all know that, but do you know what kind?

Here is a list of current research projects funded by NMSS. The projects are categorized in 16 topic areas. The person responsible, location, amount of funding and area is given for each project. Then a short description of the research objective defines the project.

This list gives an idea of the breadth of research supported by NMSS. Are you interested in epidemiology or rehabilitation? See what current projects are in those categories. It's quite interesting.

technorati tags: msresearch, nmss, msresearchproject, downthemspath

Down the MS Path

Create a cloud

Statistics for Osteoporosis and Low Bone Mass

Voting for Chelsea's Hope

Paralympics, Sports and MS

Food and MS

Quality of Life for Children

Here is my contribution last week about Pediatric MS in MultipleSclerosisCentral.com. Children with MS are subject to a Quality of Life that plummets.This is a section of Health Central.

Pediatric MS - MS-like Symptoms

Pediatric MS Centers of Excellence - Read more

Pediatric MS: Resources for Kids, Teens, and Parents - Read more

Introduction to Pediatric Multiple Sclerosis

Grandchildren Understanding MS

Sit and Stay Fit with Yoga

Want to Walk this Weekend in LA?

Do You Rely on Medicare?

Walking for MS Awareness

Postcard Campaign for MS

Exercise and MS

Ampyra Approved!

Two Ideas

Oral Medication

My Card for You

Pioneers in Research

Research Studies

MS and Evils

Pain and MS, Yes, It Hurts

Biking for MS

Health Central

MS Survey

Living with MS

I Am So Lucky

Anthony's Science Fair Survey for MS

MS Progressive Types: Happiness

MS Progressive Types: Frequently asked Questions

MS Progressive Types: The Human Side

MS Progressive Types: The Human Side

Progressive MS Types: Research

Pictures of MS

MS Progressive Types: Treatments

MS Progressive Types: Treatments

MS Progressive Types: Living with It

MS Types: Living with Progressive MS

MS Progressive Types: Primary Progressive and Progressive Relapsing

MS Progressive Types: Secondary Progressive

Multiple Sclerosis - What Type Are You?

World MS Day

What's the Dumbest Thing You Ever Heard?

Worst MS Symptom

MS and Wheelchair Exercising

I Miss My Mother

The Poetry Is in the Pity - Wilfred Owen (Mar 18, 1893-Nov 4, 1918)

Is Nutrition the Answer?

2009 Charcot Award Winner

March Is My Month

Bill Cullen, Game Show Master

Everybody Wants a Valentine

The Value of Caring

Online Health Networks getting Bigger!

January Health Observances

MS and Depression?

It's All in the Attitude

My Wheelchair Needs Brakes!

Learning from the Innocent

MS Without Borders

Happy New Year Resolutions

Dangerous Disability Comedy

There Is Always Hope

Merry Christmas

The Meaning of Christmas

Blue Christmas

Searching for a Cure

Look at Me! Look at Me!

MS is a Family Affair

RRMS Trial Studies Enrolling Now

World AIDS Day

Christmas Shopping Then and Now

Epstein-Barr -- Rumor or Fact?

My Tips for a Stress-Free Holiday

My Amigo

Here is my contribution last week about Pediatric MS in MultipleSclerosisCentral.com. Children with MS are subject to a Quality of Life that plummets.

This is a section of Health Central.