I got an email from Berry PR. They notified me of the Mobility Study results and asked me to pass it along to each of you. :)
There were actually two studies done, one conducted by Harris Interactive on behalf of Acorda Therapeutics, Inc. and the other by the National MS Society. The combined results provide information about people living with MS and their opinions in regard to mobility. Two-thirds of people with MS reported difficulty walking and state that their difficulty walking affects their quality of life and ability to work. This piece was not surprising. What was surprising however, is that nearly 40% of MS studied and 50% of their care partners report that rarely (if ever) discuss their mobility issues with their doctors. It also reports that 47% of MS patients stated their difficulty with walking has increased the cost of their care. 92% of them mentioned that they use some type of mobility device (i.e. cane, walker, scooter) and that it is "worth it" however 45% of them stated that they are/would be embarrassed to use such devices.
Hopefully studies like this will provide some much needed information to help all of us with MS. Personally for me and many people that I personally know who have MS, mobility is a real issue. I fall in the category of people whose cost of care has increased. Recently I had to start physical therapy due to problems walking. As a part of my physical therapy, I have been given special pillows for under my neck when I sleep as well as to help support my back when I am sitting (either at a desk, on the couch, or even in my car). Not to mention they have started me on a tens unit which is a little machine (not much bigger than a cell phone) that plugs into these pads and when turned on send electrical impulses into the muscle and nerve. I have not been doing it long, but I do think it will be helpful. Having said that, I did see the bill and it is almost $800....for such a little thing. But, it is worth it. Thank goodness I have insurance.
Anyway, for the full report on this study, click here or go to http://www.nationalmssociety.org/
Speaking of studies...Kim over at Mandatory Rest Period has a great study that also came out on the 25th about overheating and eye movement. Very interesting study. Go have a read!
I hope you are all well.
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4 comments:
Seems like a duh survey, I will have to read it...do they mean they didn't tell their family doc? Surely they told their neuro, and was nothing obvious to the doctors?
That would be note worthy indeed.
Hi Diane,
I think the point of the study was because although everyone understands mobility is a real issue for people with MS, there is always more to be learned. There is a real stigma that can come from using a mobility device (especially for someone who is yonger and/or if you look fine). This seems to be a theme with us MS'ers..."You look so good".
I know there have been many times when I was at my doctors (and yes, even the neuro) I did not mention everything going on because sometimes I forget to mention things. If I don't write whats going on ahead of time, then I usually don't remember about 1/2 of what I wanted to talk about...things that impact me because of my MS and that should be discussed with my doctor. Fortunately, I have learned to write things down and have a list of things I want/need to talk about as well as questions, updated list of meds, etc. I also take a pen and paper to take notes so that I can remember what my doc tells me at my appointment. Otherwise I may forget by time I get home.
When it comes to mobility issues (and for that matter most everything else) I could care less what others think. If I am having a hard time and need to use my cane or walker, than I do. If I need to use the scooter at the grocery store, then I do. If I need to park in the disabled spot, then I do. If someone doesn't like it then tough. There has even been a time or two where someone would say something (assuming that I was not the one with the need/disability...talking here about parking) and I have just turned to them, smiled, and said well, if you would like to have my illness then have at it because I would much prefer to park further down and walk. That usually shuts them up! :)
It is no ones business why we have a mobility device. And, the downfall of an illness like MS is that often times we appear to look just fine. This is just one more piece of this illness that we must live with.
There are parts of the survey that are pretty obvious, but anything that is being done to help someone with MS is worth it!
I hope you are doing well. Take care of yourself.
Jaime
Here is what bugs me: Your neuro, knowing you have MS, should be ASKING. I'm on the Puget Sound Health Alliance and we are working to quantify what Drs. do and SHOULD do. An obese patient should have their BP checked and tested for diabetes (EX) and I believe an MS patient should be asked, "Any mobilty problems?" I was asked those questions 18 YEARS ago; it disturbs me that it would not be asked BY THE NEURO in 2008. I'll use this survey at our next meeting. Some of the things I read that are happening to MS patients(on blogs) AAARRGG, I wish I were stronger to investigate the whole MS situation more. Catch-22 LOL
I completely agree Diane! You would think the neuros would be doing a full check to see how things are going (especially since memory can be a real part of MS and so there are likely things we will forget to mention if left to us).
My neuro personally does a full check at each appointment. She not only asks about the typcial stuff like meds, any changes, etc. but she has me walk for her, she does a sensory test, checks the eyes and even more. There have been times where I did not think something was going on (because as MS'ers I think some of the smaller things don't really phase us, only they should because they are indications of what may come) but she has noticed and been able to do something about it so that I would not get worse.
Some of the problem I hear from people with MS (espcially in smaller communities) is that they go to a general neuro who knows about MS but does not specialize in it. I think it is important for everyone with an illness like this to have a doctor that specializes in it.
Unfortunately not everyone has access. I have to drive almost 4 hours to get to a neuro who specializes as there is not one in my area. Not everyone has the ability to drive to see someone.
I think it is great that you are part of that allience.
Take care,
Jaime
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