Saturday, March 29, 2008

My Life Affected By Disability

Rule Change - Disaboom draftsSo here I was. Twenty-five, mother of two, newly divorced in a new location, a big city. I had little money, no job, no work clothes, no work experience except as a wife and mother, and a college degree -- almost. My parents said I could move in with them, but I did not think that would work out. I did not want to be dependent and I did not want to be a burden. It was time to start fresh.

I found a job as a bank teller. Not too much money, but the hours were good for the boys. They were accustomed to having me around all the time. I did not want them to be suddenly thrust into full-time day care. Being a bank teller meant I had regular hours, no overtime, and two early days each week. This would work for now.

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Friday, March 21, 2008

Outrageous Ideas in MS Research

During the light bulb invention process, Thomas Edison said
"I have not failed. I've just found 10,000 ways that won't work."

Some of those ideas probably seemed pretty far-fetched until they worked.

Medical researchers seem to be prepared to try anything, investigating all avenues, including ideas that worked for other diseases. If the standard avenues have been tried to no avail, where do the researchers go next? They have to be prepared to think outside of the box. Someone in pain or discomfort may be willing to go to any length to find promised relief. Let's look at some of the unexpected ways of alternative treatment therapies - from poison to animal products - that have been proposed, tried, are being tested or, in some cases, actually used today.

Wednesday, March 19, 2008

Teleconference Tonight!


The emotional and cognitive impact of MS can be as challenging as the physical aspects of the disease. Join Allison Shadday, L.C.S.W., author of MS and Your Feelings and Jeffrey Gingold, author of Facing the Cognitive Challenges of MS as they discuss their own experiences and take questions from callers.

Wednesday, March 19, 2008, 8:00 p.m. EST

To register, please call 800-350-5321.
Outside the U.S., please call 706-643-5941.

For more information call: 888-MSFOCUS or visit: From the homepage, click on Calendar of Events.

Monday, March 17, 2008

How Is Your Quality of Life?

The Sonya Slifka Longitudinal MS Study is in the second phase of gathering information from MSers all over the country. Phase I has already enabling the National MS Society to better advocate for MSers.

Would you like to participate? They are looking for people who fit into one or more of these categories:
  • Recently diagnosed (2007 or 2008)
  • African-American
  • Hispanic
  • 18-24 years old
If you are interested and fit in one or more of the categories, learn more about the study and how to volunteer from the NMSS.

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Sunday, March 16, 2008

Pins & Needles - Or Just Needles?

A study in Nottingham University in the UK compared the effect of different acupuncture types on quality of life in secondary progressive MS.

The two types are Chinese Medical and Minimal Acupuncture. The study focused on fatigue and general health. Minimal acupuncture results showed minor improvement in general health, but no other differences were found.

The study was small, and therefore not conclusive. It does appear acupuncture is safe for progressive MSers.

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Saturday, March 15, 2008

Embrace a Healthier You

Wednesday is webevent day for MSlifelines. Here is the calendar of MS Life in Balance webevents for the first half of this year. Take a look and mark your calendar for March 26. This month the topic is the role of the MRI in . Enjoy.

Wednesday, March 12, 2008

Who Can Predict?

An article in the Vermont Times Argus reminds us that MS is an unpredictable disease. Even though so many people are affected by the disease, they do not follow the same pattern of progression.Also, there are more treatments now than ever before, but no one can predict if any one treatment will work for any particular MSer. This is true for traditional and alternative treatments.

The article refers to two books. First is Complementary and Alternative Medicine and Multiple Sclerosis by Allen C. Bowling of the Rocky Mountain MS Center. The second book is Multiple Sclerosis: An Essential Guide for the Newly Diagnosed which covers traditional treatments, Avonex, Betaseron, Copaxane, Novantrone, and Rebif.

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Tuesday, March 11, 2008

MS Videos

Here is a series of short (3 to 6 minutes each) videos presented by the Quebec Division of the Canadian MS Society. I found these in msdialogue, the online magazine of
Topics begin with an introduction to MS, then touch on symptoms, preparing f
or a neurologist visit, fatigue and black holes.

I watched all of these and wished they were around when I was first diagnosed. The neurologists speak candidly, and their message is clear. The first one, "What is Multiple Sclerosis" is a great introduction for anyone who does not know. I would have shown my kids so they could get a clear understanding of the Monster that had joined our family.

If you have a few minutes, watch a video. Then share it with someone who loves you.

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Sunday, March 09, 2008

MSer Blogs

Visit Brass and Ivory where Lisa is watching 137 active MS blogs and inviting us to link and do our share to increase awareness. Remember March is National MS Education and Awareness Month. Look through her list and discover new MSer bloggers at MS Awareness, Blogging Friends, and a little Link Love. Good job, Lisa!

Here is a new blog. Mark is not necessarily new to MS, but he is new to MS blogging. So far I think he is doing great. However, I did not see Mark and MS on Lisa's list. It is possible it is there and I just missed it - vision problems, you know. Well, if it really is not there yet, it looks like Lisa now has 138 sites for her list! He would be in the "moderately prolific" section.

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Friday, March 07, 2008

Changing the Perception of Disability

There are people with disabilities among us. I know because I am one.

As with any group that is seen to be different than "normal," there are preconceived notions. Many of those notions lead to discrimination and/or exclusion (what else?????). Changing those notions can benefit society as a whole as well as the group. Let’s talk about the group of people with disabilities. What can be done to improve those notions?

Increase Awareness and Education
How do we let Society know about disability? TV and movies have a way of making things part of the norm simply by including characters or situations in story lines and commercials. It has been done for years now, and it is becoming more commonplace to see a character or extra or an episode situation with disabilities. That is a good start.

Monday, March 03, 2008

Regaining and Remaining Mobile

Many MSers use wheelchairs or scooters and are faced with having to learn new ways of remaining or regaining mobility. Here are two web sites that are useful to wheelers --

New Mobility
: The magazine for active wheelchair users
The New Mobility mission tells us they encourage integrating active wheelers into mainstream society and participation in all areas of life in the disability community. They bring quality articles for an under-served market -- that's us! -- on a wide range of topics from spirituality to sexuality and everything in between.

Mobility-Advisor, a Wheel Chair Mobility Resources and Information site
Mobility-Advisor tells us it provides an educational guide for everything about wheelchairs and accessories. There is information on all types of mobility devices, including wheelchairs for dogs!

On a personal note, I rely on my Amigo. Al Thieme built the first power operated vehicle (POV), or as we call them scooters or carts, in 1968 and a new industry was born. I am thankful for my Amigo every day. Thank you, Al, for mobilizing so many of us, and happy 40th anniversary!

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Saturday, March 01, 2008

Sitting Pretty

There was a time, it seems like another lifetime, when my clients were senior marketing execs of major travel and hospitality corporations. It was part of my job to look sharp and professional, and as a person with an interest and education in fashion, my goal was to dress for success with a flair. I paid particular attention to my wardrobe.

Now I no longer work, I am in the scooter all the time and my dressing priorities have changed. Still, I want to be fashionable and feel good in my clothes, but I have to think about accessibility and movement and comfort in ways that never crossed my mind before. As a single mother with young boys, comfort was always a factor, but now it is a priority.

I went shopping. Catalogs for women with disabilities such as Clothing Solutions show dusters and house dresses or muu-muus, usually in a busy, little flower print – not exactly cutting-edge couture. I just did the best I could with the clothes I already had. Some things worked, but most things did not. My line had changed from upright to seated and there was the additional bulk of a scooter to consider as part of my silhouette.
(read more)

Learn About MS in March

March is National Education and Awareness Month.

This year's theme is MS HEROES. Throughout March, you can nominate your super hero in one of five categories:
  • an MSer
  • an MSer carer
  • an MSer family member who helps, but not as the primary caregiver
  • a healthcare professional who serves MSers
  • any person who takes personal or political action for the MS community
For more information and nomination applications read MS Focus or by call 1-888-MSFOCUS (673-6287). Nominations are accepted until March 31.

Check the MSF Calendar of Events to find an event near you.

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