Wednesday, July 27, 2011

Multiple Sclerosis Assessment Tool


As a Multiple Sclerosis spouse caregiver of 21+ years you develop skepticism among many other ‘skills’ through the years.

So when I received an email from Danae Matthews of Forward Health about a …
“This is an on-line resource to help viewers assess their current conditions … I think this tool would be an excellent resource for readers of your blog and I encourage you to check it out.”
Well considering that MS is just so plain weird and individual I took the bait …

Surprisingly this assessment tool was almost right on with Patti’s EDSS score and was not fooled by non-MS me taking it.

While I am not qualified to endorse assessment tools, I can see uses for this: 
  • Improving MS awareness among family and friends. How much do they know about ‘your MS’ and severity, progression, impact on abilities, etc?
  • Like any language skills caregivers/carers need to practice and this was excellent for neuro-speak. Time spent at medical appointments can only be improved when you speak the language.
  • Knowledge is power. It seems to me an empowering starting point.

Additionally that skeptic in me must offer that I noticed ‘tysabri’ is in the web address and a Tysabri ad displays at the top of the tool, so they must have something to do with it. Opening the Forward Health site it does display like a who’s who of Big Pharma, however running the tool left no spyware or prying cookies behind on my PC. Though I should qualify this by saying I use the full AVG version anti-virus/anti-spyware and as a double check ran Spybot afterwards as a confirmation. 
Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com  

6 comments:

  1. Peace Be With You

    I took it several times and each time it gave me the same answer which was a much lower EDSS than my own doctor gave me and since my symptoms remained stable over six months, it's not because I got better since the doctor saw me last. So I don't want to look a gift horse in the mouth too closely because, hey, it's great that the EDSS is lower. But either I am in denial about my true state and am reporting milder symptoms than I actually have or this test does not record what is the greatest source of my disability which is the chronic fatigue. My severely impaired balance and right leg function reported for this test don't push me into the category my doctor puts me in. Interesting.

    Judy

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  2. I did this same post with this test and since so many of us got low scores....I wrote Diane to ask why. I posted her answer on my blog, if you want to read it. It basically said this is a baseline score. I did realize watching the videos how the Doctors think about MS and disability.

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  3. I talked with Kim about this already. The algorithm which produces the score at the end if the "assessment" is messed up. The explanation which Diane gives does jive with my test runs of the tool.

    I've not blogged this one yet because I don't think that the story is over yet. Well I hope not. Not surprisingly, I know some people who work for Biogen or agencies who work closely with them. I contacted one person who is looking into this further although his group was not responsible for creating the tool. Basically he has informed the person at Healthline responsible that they need to reexamine the algorithm.

    Hopefully this won't get ignored because I like the concept of the tool especially with the videos. But I gotta tell ya that when you input all ones across the board and get an EDSS of 1.5, you should get something higher than 1.0 when you input individual scores ranging from one to five. Seems logical that increasing symptoms/disability should not result in a lower EDSS score. Just sayin'.

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  4. Judy, KIm, and Lisa - thank you for the comments. Now if only this 'tool' could create such dialogue and interest among 'family and friends' that maybe just maybe support and knowledge of those living with MS might just be improved.

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  5. Starting dialogue and real understanding would be an awesome outcome.

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