Wheelin Rev
07-12-2006, 09:48 AM
Hello everyone, SCI and others, inside and outside of Maryland. I need your help, comments, ideas and prayers.
For those that did not check my profile, I have a rare neuro-muscular disorder called MELAS, a mitochondrial myopathy. I use a wheelchair almost full time as I can only walk a very limited distance using a cane or walker. I am an "interim support group leader" for the United Mitochondrial Disease Foundation (UMDF) at http://www.umdf.org. The group "formally" currently consists of me, myself and I due to the relative rareness of mito disorders. Even though the Muscular Dystrophy Association (MDA) at http://www.mdausa.org supports mito disorders in their programs and who has over 2,000 known cases of MD in our region; even they do not have a local support group. And then, looking here, there are no local support groups for SCI.
My question is... Why?
With respect to chair users, there must be a lot of folks around here that have similar questions as I do about issues that we deal with every day that affect all of us such as accessible restaurants, reputable medical equipment dealers, doctors and clinics of medical specialties, "gatherings" of other chair users to compare notes, exchange ideas and just shoot the breeze, etc.
Why do chair users not seek out others in their local area to talk to on the Internet, the telephone and in person? Even large websites such as Wheelchair Junkie (http://www.wheelchairjunkie.com) for chair users do not seem to have many folks that get together other than on the Internet seperated by many, many miles.
In my case, I am just looking for others in my area to learn some of the "inside secrets" about our area for us chair users. Perhaps I "missed out" by not going through in-patient rehab but even my PT/OT and the DMEs that I've talked to, do not know of any "groups" in this area other than going to the senior citizens centers. Nothing against seniors since I have past the half-century mark myself, but those at the centers have different needs that I do. Besides, I don't know how to play many different types of card games. LOL
So am I missing something here? I know that I am missing some marbles but I just don't understand why there seems to be any special interest groups (SIGs) for chair users like us in a local area. Even looking down the posts in this forum, local groups seem to be few and far between.
Seems odd to me. Any comments about my observations? Perhaps I am just looking in all of the wrong places? Help me out here, please...
Thanks! Dave
For those that did not check my profile, I have a rare neuro-muscular disorder called MELAS, a mitochondrial myopathy. I use a wheelchair almost full time as I can only walk a very limited distance using a cane or walker. I am an "interim support group leader" for the United Mitochondrial Disease Foundation (UMDF) at http://www.umdf.org. The group "formally" currently consists of me, myself and I due to the relative rareness of mito disorders. Even though the Muscular Dystrophy Association (MDA) at http://www.mdausa.org supports mito disorders in their programs and who has over 2,000 known cases of MD in our region; even they do not have a local support group. And then, looking here, there are no local support groups for SCI.
My question is... Why?
With respect to chair users, there must be a lot of folks around here that have similar questions as I do about issues that we deal with every day that affect all of us such as accessible restaurants, reputable medical equipment dealers, doctors and clinics of medical specialties, "gatherings" of other chair users to compare notes, exchange ideas and just shoot the breeze, etc.
Why do chair users not seek out others in their local area to talk to on the Internet, the telephone and in person? Even large websites such as Wheelchair Junkie (http://www.wheelchairjunkie.com) for chair users do not seem to have many folks that get together other than on the Internet seperated by many, many miles.
In my case, I am just looking for others in my area to learn some of the "inside secrets" about our area for us chair users. Perhaps I "missed out" by not going through in-patient rehab but even my PT/OT and the DMEs that I've talked to, do not know of any "groups" in this area other than going to the senior citizens centers. Nothing against seniors since I have past the half-century mark myself, but those at the centers have different needs that I do. Besides, I don't know how to play many different types of card games. LOL
So am I missing something here? I know that I am missing some marbles but I just don't understand why there seems to be any special interest groups (SIGs) for chair users like us in a local area. Even looking down the posts in this forum, local groups seem to be few and far between.
Seems odd to me. Any comments about my observations? Perhaps I am just looking in all of the wrong places? Help me out here, please...
Thanks! Dave