Reply #72: I have MS too ..

[gleaner]

I didn't like this bill, but I am not writing about that. I have some links which may be helpful to you and your wife which have nothing to do with politics, but which could provide some help if you wanted or needed it.

http://www.msfocus.org/ This link is to the MS Foundation. They provide access to a lot of helpful information and services. I am the only caregiver for my husband who had MRSA and is bedridden. I do OK on most things but vacuuming and moving heavy things are really hard for me as is walking much distance without resting. The hospital where my husband was treated gave me the name of the MS Foundation. They give small grants and stipends not based on income for the person with MS. In my case they gave me five visits from a cleaning company to help with the heavy work I can't do myself to catch us up. They said they will also check out and help repair our air conditioner. I am one of the 80% of MS people who are acutely heat sensitive. It has been a real help. Hopefully they could provide you with some assistance in an area where no one else can. Call their 800 number and discuss it with them. They will be able to explain their program much better than I can.

http://narcoms.org/ This is a research project. The person with MS participates voluntarily. They are assigned a blind number to protect their identity and are asked to fill out a questionnaire every six months either on line or through the mail, depending on their preference. The questions are a self assessment on MS and various MS related symptoms. It is useful because you get a good objective self view of your illness and how it is progressing. I saw a lot of symptoms that I thought were unique to me that others had and it was somehow comforting. Also they send out a report (I believe quarterly now) which goes into MS research on the illness, treatments, protocols and If you want to participate, clinical trials of various medications. It is designed to create a body of information provided by the MS people themselves for researchers and doctors to use both now and in the future.

http://www.nationalmssociety.org/index.aspx This link is for the National MS Society, which you are probably already familiar with, but I thought I would include it anyway. They can refer you to a local MS Society which can provide referrals to respite camps, peer groups for patients with MS and their families and they also discuss research and symptomatology. Again, a very helpful site.

I hope this helps. We may disagree on politics sometimes, but MS doesn't change. It is the real enemy. I wish you and your wife all the best.