I just saw Jerry Lewis on again. He’s been on TV on Labor Day all of my life (40+ years) It made me wonder - have there been any breakthroughs towards curing MD?
Not much. They’ve identified the genes that identify which of the 43 different types of Muscular Dystrophy that are presently recognized. They have developed some treatment, medications and therapy, to assist patients living with the disorder. There are no cures to date. There are some potential cures however that are being tried on the more life threatening dystrophies like Duchennes which effects boys and is usually fatal by their teenage years. My wife and daughter both have/had Myotonic Dystrophy and we have spent a LOT of time at doctor’s offices and hospitals over the years.
Gene surgery is the promise they’ve been making for many years now. They inject the patient with a virus that attaches itself to your DNA and restructures the defect through the use of an antioxidants and ??? can’t think of the terminology offhand.
Mostly the money is sucked up by researchers and pencil pushers…we had to find my daughter’s MD specialists at the Scottish Rite Hospital in Dallas because the MD clinic couldn’t keep a pediatric neurologist on staff because they wouldn’t pay him. We also had to get my daughter’s wheel chair somewhere other than the MDA because of the waiting list and “priorities”. About the only real thing I ever saw the MDA provide is Rodeo tickets every year, :rolleyes: t-shirts at labor day and a week of summer camp for my daughter in June.
When my wife died this summer they never even came by, or called. She was a regular patient at the MDA clinic in Tyler for nearly eight years. She helped raise thousands…hell hundreds of thousands of dollars over the years for the MDA.
YET…the bills from this summer have taken everything she and I worked for the past 12 years together AND there has been not one single dime of help from the MDA.
BTW MDA patients have no availability to any real medical or health insurance because it is a pre-existing, genetic, chronic and/or fatal disease.
You better have DEEP pockets. As for me, I’m busted…completely and totally. Even lost the house I’m afraid. Kids had to move in with grandma. Got about a half million dollar hospital bill that I’ll never be able to pay. Don’t worry though. I’ve been informed that they can garnish my wages and auction off the place…etc. Fuck’em they can get in line with the rest of the goddamned vultures. I’m still trying to pay for a funeral.
Yeah, the MDA…is a fucking joke.
That’s the truth.
Sorry if that ain’t what you wanted to hear, but I’ve had all their bullshit I can stand. They want to get all nice at labor day and shit but the rest of the year they don’t know who the fuck you are. :mad:
t-keela thanks for answering a thread on a topic that must be very painful for you.
I am infering here, but I get the impression that you feel that MDA is perhaps not the best place for people to put their money if they want to help.
Do you know of a better place?
And t-keela - my sincere condolance for your loss.
My family and I have been involved in a lot of charitable causes over the years. My son’s scout troop is always doing something. Like I said my wife was very active in not only the MDA but many other causes as well. My daughter is at the telethon in Tyler with her grandmother right now. She does other thing as well. As much as she is able to considering her health. I wouldn’t let her know about my disappointment in the way the MDA responded to my wife’s situation this summer. Nor the many times in the past that we couldn’t get any help from them. I have been up close with a numerous charities over the years for as far back as I can remember. I used to help mom when I was young. She volunteered for meals on wheels. That is an excellent cause. I helped out at a few shelters for the homeless and one for battered women. All very good causes.
Most recently, Labor of Love, Houses for Humanity and The Children’s Miracle Network are three fine places for anyone who has time or money they’d like to contribute.
Most counties have a local shelter and the Chamber of Commerce where you live should be able to hook you up.
My wife was especially fond of the “Make A Wish Foundation” she and a good friend of hers used to get together to sponser a child every year.
We’ve sold hotdogs…had rummage sales, volumteered time and what little money we could spare. Therese used to make things. She was very talented and would contribute jewelry and crocheted items that she made. which would then be auctioned off with the proceeds going to the local shelters. I almost forgot about coats and toys at Christamas. Plus there’s always someone in need of food. We have a “food pantry” here where you can drop off shelf nonperishable items that go to peole who need help.
The list of really good causes is endless. I would keep it local. That way you can see the results.
Don’t misunderstand me, there are a lot of BIG charities out there that do a lot of good. But they say it starts at home. Sometimes your neighbor can use a little help but is too proud or ashamed to ask. Look around, once you get started you’ll see there are plenty of places where you can help.
BTW thanks for the condolances…it has been very difficult. We were never apart for one day and the last year was better than the first year. I didn’t think that would’ve been possible but we were still on our honeymoon after twelve years. 
I’m gonna add my sig…if you bother to read it, don’t worry about some of my comments. I’m getting better, thanks again. regards t/k
Oh, t-keela, I’m so sorry that you’ve gone through all that. You’re truly an inspiration to all of us in having found the strength to carry on through all that.
I have heard before that some MD patients have a problem with the MDA. So hasn’t anyone started an MD charity that is less controversial than the MDA is? It seems like gene therapy would really be a promising way to fight these diseases if there is a way to make sure the money is used appropriately.
That’s kinda what I was trying to ask. I already give plenty to the local homeless shelter and toys-for-tots and other causes I think are good. I was wondering if there was a better charity for MD…
t-keela, I’m so sorry for your loss. I started reading your blog and was reduced to tears so I’ll have to go back later to try again. Your strength is what honors your wife’s memory. Please tell us what we can do for you. I believe charity comes from the heart and is best served “locally” as well. The SDMB is our community and we’re a fairly generous bunch ;). I don’t believe in socialized medicine but no one should have to go through what you and your wife has been through and left with insurmountable medical bills. How can we help?
The Shriners Hospitals for Children such as The Scottish Rite Hospital in Dallas does outstanding work for the children that they treat. we finally got our daughter admitted and she has received excellent care. Not that there is really much they CAN do but at least they try. As far as an adult clinic…we never found one and now it is too late to help my wife. She was in the ICU for nearly a month and the MDA never once even bothered to check on her. I know they knew she was there because I called them and told them myself. Her neurologist at the MDA should have at least consulted with her neuro at the ETMC.
The MDA called me a month later to confirm an appointment Therese had scheduled for a checkup. They had been notified three different times BY ME that she had died. To hell with them. A friend of hers there did at least send some flowers.
Damn I gotta stop now…sorry. There’s a comment section on the blog if you’d like to add something. I’d appreciate it and I’ll read it later. I don’t like to dwell on this at the SDMB too much. I feel like I’ve overstepped my bounds here on this once or twice already. Thanks