Posted on: Sat, Mar 1 2008 4:23 PM
Posted by: Betti Posts: 18
I have 5 sisters and a daughter and none of them have any muscle weakness at all. So I am the only mutant.:)
I know what you mean about "in the dark". I was always one of the worst in gym class and was told by my mom and the pediatrician to try harder! I began exercising in 4th grade cuz the physical fitness tests were so humiliating! It is a better world today! It wasn't until I had my daughter at age 30 and got worse that the doctors took me seriously. I do believe that what doesn't kill you makes you stronger in terms of faith and will!
Posted on: Sun, Mar 2 2008 2:14 PM
Posted by: Ginny6957 Posts: 4
My name is Ginny. I have FSHMD and have used a powerchair for about 6 years, I am 50 years old. My father also has FSH. I agree with you Betti about "what doesn't kill you makes you stronger."I was also not great in gym, but did not know at the time, I was officially diagnosed at age 28, but had symptoms before. I refuse to give up and since I have been sitting have graduated from college while working full time. After graduating with honors, I received a promotion at work and a really big raise. Also because of my legs weakening I was no longer able to drive a car using my feet, so I went to rehab and learned how to drive with my hands, I had to do a driving retest for the state (including parallel parking...yuck), but I passed the first time. I am married to a wonderful husband and live in NJ and am a Systems Analyst in the laboratory at a large medical group.
The only way to approach life is with a good attitude and deal with what you have been dealt realistically and in the best possible way. It does take work and it is not easy and you must be proactive to get what you need.
Posted on: Mon, Mar 3 2008 1:56 PM
Posted by: Jac Posts: 15
Ginny Hi,
It's wonderful that you've been able to achieve so much while' sitting'. You're an inspiration. At times I've thought about going back to school. Just not sure who'd be there to get me through the day as far as bathrooming breaks. I imagine if there is a will there is a way.
Best of luck! Jackie
Posted on: Mon, Mar 3 2008 2:25 PM
Hi Jackie,
Thanks for the compliment Jackie. The bathroom is the hardest part for me too. Fortunately if the bathroom is arranged correctly for me. I can still get myself to a standing position to pull my pants up. I am able to use the wall (only if it is on the left) to leverage myself off my chair, by using the grab bar and the arm of my chair, which has an elevating seat. Otherwise I need to be with someone to help me. If I go out by myself I make sure I go before I leave and have to return in a couple of hours to use the bathroom. My place of employment does have a bathroom I can use alone with no assistance, but now I do tell a couple of people that I am going, just in case I do have a problem.
As far as school goes, you can go online in this day and age and can do it right from your home, so do some research and find out who offers online schools for what you want to do. Good luck. If I can help let me know.
Ginny
Posted on: Mon, Mar 3 2008 9:43 PM
Go Ginny!
so good to hear a good, positive story! I live in PA and had a van converted by the state, fully expecting to continue working. I decided against taking the drivers test again to get push button steering because it would have meant I would not be able to drive our Mustang legally! Due to circumstances beyond my control, I was forced to resign last year. I am determined not to be a victim, so now I sell books and handmade things on-line and am having a lot of fun. I also became an Arbonne Consultant, and volunteer at a local hospital.
I also have a great husband, my second marriage - aren't we blessed! - the first one couldn't handle things, but I have no regrets cuz of our daughter.
Posted on: Tue, Mar 4 2008 6:21 PM
Betti, you seem to be doing great yourself and leading a fulfilling productive life. I am happy for you!! I am confused about what you said about driving though especially if you have a van that was converted by the state.
I agree we are blessed.
Posted on: Thu, Mar 20 2008 11:49 AM
Posted by: GaryC Posts: 1
Hello.
I am new to disaboom. I also have MD. I have ocular pharyngeal muscular dystrophy which is an extremely rare form of the disease. It is normally a late life onset form of MD. I started to show symptoms at age 50. I am now legally disabled and collect social security disability. I have droopy eyelids, (have had two surgeries to help this), swallowing problems and very weak legs. This form of MD is not in itself deadly. But it can contribute to death through choking or malnutrition because of the swallowing problems. But the disease does not appear to take any years off of your life, though it may one day put me in a wheelchair. But all in all I consider myself lucky. I have a wonderful understanding wife, two great sons and three grandchildren. Anyway, wanted to say hello to all.
Gary in Washougal Washington.
Posted on: Thu, Mar 20 2008 12:08 PM
Posted by: Debbie Posts: 3,878
hi gary, it's nice to meet you and welcome!
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