I had my annual trip to the MD Clinic today. As long as we had to go to the cities, I had scheduled to get my wheelchair serviced today too. Side note on that.... a week and a half ago I was going down the hall and stopped to say something to Elizabeth in the laundry room. As I stopped and started to turn my back caster wheel fell off. Yes, right off, and there my chair was stuck. Thankfully, I still have my old scooter around for a back-up. If I didn't have the back-up, my poor kids would have had to put up with this lady......
Anyway, back to the Doc. appointment. He always asks if there is any changes. Of course there is never daily changes, but looking over a whole year there is always some more muscle loss. Just the nature of Muscular Dystrophy. Then he does a quick assessment of the strength in all my muscle areas, then usually he tells us there is no hope for me. No, just kidding!! He usually tells us they are working on a cure, but they just aren't there yet. Well, this time we got uplifting news! First, there are many forms of MD. I have Limb Girdle. Then there are several types of Limb Girdle, I have type 2E. My doc said they have done clinical trials with type 2D were they use a type of virus to deliver the corrected gene to the muscle cells, and it appeared to work! Since the different types of LGMD have different defective genes, they will need to do more testing to see if they can get the other genes delivered to the muscle cells as effectively. He said, it probably won't be in a year, maybe, but probably not in two. But, he seemed quite optimistic about them finding a way in three to five years. Now, I'm usually the optimistic type, and I'm very excited about the news my doctor gave us, but I'll save my celebrating until he tells me I can start a treatment. I think it has lifted my spirits though, I feel a little more cheery!
~~~~~~~~~~~~~~~~~~~
About 2 weeks ago Joseph found a really cool rock and gave it to me.
My kids are so sweet!!
I'll be updating posts from between the move and now. Check back....
2 comments:
That's scary about the wheel. How on earth does a wheel just fall off like that??
A cure?? Or at least a treatment on the horizone? WOW! Amazing! We will definitely be praying for that to come FAST!!
I have a whole container of misc rocks and stuff the boys gave me. It is such an honor when they provide proof that even though they wanna play all big and tough they think of us often. ;o)
Hugs, darlin! Hope all's well. xoxoxo
I'm sorry the wheel came off, that does not sound good at all. I don't know much about MD, but I had an aunt with MS and I understand the frustration you feel when they say something new is coming and then takes way too long. Good luck, I hope it comes sooner rather than later.
Post a Comment