Friday, June 29, 2007

Paradoxical Effect in Osteoporosis

Osteoporosis is common among MSers. There are medications that strengthen bones and elevate calcium levels.

However, there may be a catch. A recent study found that popular osteoporosis drugs biophosphonates, may have a paradoxical effect. That is, these drugs may do the exact opposite of their intention. These drugs include Fosamax, Actonel, and Boniva. I took Fosamax for awhile, but apparently it did not increase my bones' density enough to stay with it, or maybe not at all. I was concerned it may have affected my jaw, but the x-rays said that did not happen. Whew!

So now I get daily injections of Forteo. There are no studies of Forteo beyond a two-year regimen. I am about there, so I'm wondering what's next.

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Wednesday, June 27, 2007

Gateway To Information

The MS-Gateway is a site sponsored by Betaseron. Whether you are a Betaseron user or not, the site has helpful information and a forum. Forums are categorized by Symptom, Treatment, General, and Nutrition, so you can easily find a comment that interests you.

Like many social networks, you can see which registered members are online at the same time you are. Unlike many social networks, you can enjoy the site without registering.

Now, here's my favorite section:
Have you ever tried to describe your symptoms to a non-MSer? Look in the Understanding MS section under MS Simulator. Optic neuritis not only gives a nice explanation, it presents it in a totally understandable format.

Now, complete the form under incoordination. It made me smile, but it enlightened my friend with real understanding. Give it a try!

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Sunday, June 24, 2007

Charles Darwin and MS

Charles Darwin did not have MS, or at least I don't think he did. What he did have was a theory of natural selection.

Darwin said:
It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.
If there is one thing certain about MS, it's the unpredictability. Living with changing stages of MS includes exacerbations, flareups and relapses. MSers quickly learn we cannot predict what the change might be, how long before it changes again or changes back, or partway back; we just know there will be change.

MSers have great opportunities to develop responding skills - how lucky are my descendants! They will have an instinctive ability to respond to change.

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Thursday, June 21, 2007

Be Cool

Now that summer is here, we have to be aware of the extra heat. Heat does a number on me -- I wilt like a cut flower with no water.

Good luck staying cool and Happy Summer!

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Monday, June 18, 2007

My Compassionate Caregiver

My caregiver is untrained, but he does a nice job. He did not get formal training because, like so many others, he did not plan to be a caregiver by profession. It was by circumstance my MS progression has rendered me disabled and therefore dependent. It is by the greatest luck that Garry chooses to care for me. He is in on-the-job training.

He has written a thoughtful piece including ten CNA tips for Compassionate Caregiving. He is a compassionate caregiver and I am lucky he chooses to train on the job with me.

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Sunday, June 17, 2007

Forms for Permanent Disability

What is it about 'permanent' they don't understand? Every year I have to complete forms and have the doctor sign them to designate me as permanently disabled. Many of you know about these forms.

The questions are the same each year. The requirements are also the same each year . There are no shortcuts. There could be a question right at the top asking if there are any changes from the previous year. But, no-o-o-o.

Can you stand for long periods? (no)
Can you climb a ladder? (no)
Can you lift heavy weights? (no)
Can you work around dust and smoke? (no)
Can you dance a jig? (no)
Can you fill out forms? (no)

I am embarrassed to ask my doctor each year, because I know he has more than just mine, and it is kind of a painful experience.

Benjamin Franklin
said "Certainty? In this world nothing is certain but death and taxes." If he had included something about permanent meaning permanent, maybe we could forget about the forms.

Or maybe the forms ritual is as permanent as the condition. Hmmm.

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Saturday, June 16, 2007

When Mom Is an MSer

What happens when a mother has MS? It's difficult enough for adults to understand. What do we tell our children? They often get the kids' version, a vague summary. MS affects the MSer, but it doesn't stop there. A high school student in an adjacent suburb struggled with the disease even without symptoms of her own.

Sophie Levy'
s mother Karen has had MS for years and she felt alone with her emotions. As a result of her senior project, she says she came "out of the dark." Sophie interviewed MS families exploring MS and what really matters.
She produced a student documentary called The Many Faces of Multiple Sclerosis.

In answering her questions, Sophie has produced a source of information so other kids would not have to experience what she went through at such an early age. She learned she is not alone and that life goes on -- a message we could all learn.

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Sunday, June 10, 2007

Is This the End of Fun?

What does an athletic young girl do when faced with a diagnosis of MS?

Kathy Wallin just keeps on going. She was diagnosed at the early age of 19. Now 51, she is a shining example of how exercise can benefit MSers with mild or moderate disability. She is determined to keep on moving. She skis with a bi-ski, paraglides, which she calls liberating, and exercises regularly with her MS group -- an inspiration to those of us who can.

And to those of us who cannot, she still inspires us to live the best life we can. Thanks, Kathy. Sometimes we can all use a reminder.

Wednesday, June 06, 2007

The Breaking Point

Everyone needs a break sometimes. If there were a way to take a break from this stupid disease, life with the disease might not be quite so bad.

Just a short break. Enough time and energy and strength to take a walk. A walk on the sidewalk outside my house to see the spring flowers that are beginning to sprout in the neighborhood, u
pright again with Garry. Going to the end of the street without the familiar bumpety-bump when my wheels cross the cracks between each sidewalk square. Just a short, smooth walk for just a short time. That would be nice.

But my MS does not allow breaks anymore. I need help with even small daily tasks, so Garry is on call all of the time, all of the time. Caregivers don't get a break either. Even though my caregiver is not disabled, he is still trapped in some disability restrictions. Caregivers deserve a break sometimes, hopefully it comes before they reach their breaking point.

To help caregivers take a break, the National Respite Coalition has a Locator Service to help find respite services in your area. Meanwhile, the Lifespan Respite Care Act, passed by the House 12/6/06 and by the Senate 12/8/06, and signed into law 12/21, cannot be implemented unless Congress includes funding for FY08.

Susana Carballido Perdigon
Caregivers also deserve an award sometimes. MSIF announced the winner of the Evelyn Nicholson Award for International Caregiver for 2007 in recognition of a volunteer caregiver, Susana Carballido Perdigon in Uraguay.

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Monday, June 04, 2007

Clinical Trials

I like to keep up with MS research, but there is a lot going on. I just added five or six studies to the "Vicki MS Search" box in the sidebar, but there is so much I don't pretend to be a scholar. I do like to read about some trials and studies.

If you wonder about clinical trials, look here. has links to the Clinical Trials Database where you can see what trials are being planned or conducted in your area. It provides information giving general information about clinical trials, and a search for location, disease or location.

I found seven trials recruiting in the Dallas area. Included is an explanation of the study, its purpose and planned course. There is information detailing criteria for who is or is not eligible for joining the trial and contact information.

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Saturday, June 02, 2007

She Was on a Roll

Madlyn Rhue, TV and movie actress, was diagnosed with MS in 1977. She said --
We each have two lives. The one we learn by and the one we live after that.
Her learning was as a guest on many popular series beginning in the '50s, as well as soap operas. She was also in several major motion pictures. Check out a long list of her impressive credits.

Performances after 1977 were In Madlyn's second life, when she was lucky enough to continue her acting career, but with MS. She also starred from her wheelchair in an MS ad campaign headed "Even with MS, Madlyn Rhue Is On a Roll." She last appeared in a recurring roll in Murder She Wrote in 1996.

She died in California in 2003.

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Friday, June 01, 2007

Picture This: Dynamic Meditation and MS

Dr. Aretoula Fellam, Research Fellow at Harvard Medical School, has developed a holistic technique called Dynamic Meditation to improve symptoms in diseases such as MS. The MSer focuses on the symptom, finds a point of relation and using guided imagery, imagines the symptom is going away.

According to Dr. Fullam, because the brain does not know the difference between the real and the imagined, Dynamic Meditation allows the MSer to reach a state of physical peace.

It all sounds easy enough, and another article supports visualization as one of the techniques recommended when managing MS hugs.

There may be no cure, but if visualization makes life feel better, it can't hurt to try.

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