Last post Fri, Feb 29 2008 2:00 PM by Dodie. 4 replies.
Howdy,
Hi MNeu,
welcome to disaboom.
Daisies
Hi. I'm 22, and I've also been diagnosed with "i don't know what it is, but we'll call it Limb Girdle, MD" Honestly, I don't have much help with the devices. I haven't been able to find anything that would actually help and such myeself. I don't know how progressive the condition has become, but I've done alot of learning how to adapt my movements. I've come to realize that other muscles learn to compensate for the others. Most of the time, I either use my stronger arm or brace against a wall or something to help with brushing my teeth, combing hair, etc. I wish I could help more, but I figured that I'd at least let you know that you are not alone in this limitation.
As for your little ones, I have found that I have never really been able to pick up children, no matter their weight. But once I have them on my hip, all is ok. It's just that progression from floor to hip, and I've found that if I can utilize a chair or something to prop the child on to boost them up, it helps a great deal! Practicing to find what works best in any situation is the key. I often have to tell people "I can do it, it just may not look pretty!"
Also, I've been making it a point to let everyone I know with similar types of MD that I have been taking supplements that have seemed to be helping. I take CoQ10 at 300mg and a Vitamin E complex. With a little google searching, you will find the benefits of doing so, since LGMD is a lack of these nutrients. I've noticed an increase in my stamina, less cramping, and overall feeling of increased strength. It's worth looking into.
I wish you luck, and I hope that we can share any new information!
Matt and Sonya,
To the two of you, Welcome to Disaboom!
I have a degenerative neuromuscular disoder known as MELAS which also comes under the Muscular Dystrophy Association's interests. It is not a classified MD but rather one of the many mitochondrial disorders that affects all muscles throughout the body. As Sonya has found out, sometimes the CoQ10 supplements can help the oxygen transport chains in the mitochondria which in turn help the body's energy cells operate more efficiently. In my case, we call the supplements a mito cocktail.
I'll be looking forward to exchanging more information as time goes on. I believe that I have seen others here with your suspected disorder so you are not alone. As for Disaboom, the overall site is developing into a major powerhouse to cover all disabilities and turn each of them into managable abilities. It is great to have such a community to come to.
My best to the two of you!
Dave
I'm new here too.
I'm 42yrs. old and was diagnosed with Limb-Girdle MD at age 14.
I've just continued living my life one day at a time. Doing things that I can and being frustrated at things I can't. I haven't been able to lift my arms since I was a teenager. Until 18 years ago, I was still able to transfer myself from my wheelchair to my recliner, bed, or potty. Now I have to have help with pretty much everything. I can eat on my own, but someone's got to bring the food to me. I can type on my computer with my right hand, but someone's got to give me my laptop too.
Thank God for my wonderful hubby that looked past my disabilty over 20 years ago and accepted me for who I am. We have a healthy 18 year old daughter. My hubby is my main care-giver, but days when he works my sister and other family members help out with me.
I hope you can find some help and answers to your question. Good Luck!
