want your thoughts... - Muscular Dystrophy Message Board

chris5001 · 05-16-2008, 06:55 PM

i have written a post before about a similar topic but i see that there are many new members and i would like your thoughts about my situation. My dads side of the family has LGMD 1A and he himself has the disease. I guess i am trying to assess my risk for the disease. I know genetically that with it being dominant that I have a 50/50 shot at having it. But i am curious was to what you guys think. I work out consistently and have put on a good amount of muscle since i started about 6 years ago (i am 25 now) and I guess i see my dads progression (he is 52) and is using a scooter, and i am trying to assess where i am now. With anyone's experience with this disease were you always weaker than others before "onset" or was it kind of an immediate thing. I guess I am just waiting for the day that i cant do anything. I am a very strong individual.....in the upper body and my legs are getting better, i ignored them for a long time like most people do when they begin working out but now i hit them consistently...i get sore and recover very well. I am driving myself nuts thinking about this stuff but i guess you all know what i am talking about.
What about "toe walking" ....can that be noticable before any vast amount of weakness is seen? is that achilles tightness? I guess i am curious bec when i do squats i have to put my legs out a little wider so my heels dont come off the ground. could be lack to stretching since i havent really stretched my since high school.
Not that i am superman or anything but would a person with MD , even if they arent showing signs yet be able to bench press 320lbs, or stiff leg dead lift 365lbs., ?? any thoughts.....I guess i am looking for reassurance through others experiences. sorry this is so long but its been weighing on me for a while.

thanks everyone...i have told my dad about this site and how big of an inspiration all of you guys are...hopefully he will join soon and get to know you all.

CJs Mom · 05-17-2008, 06:54 AM

Hey Chris,
You sound like you're in good shape with all that working out. I don't really have any answers to your questions, but I was just wondering how old was your dad when he started showing signs of MD? My son is only 5 and he started showing signs pretty much from the beginning of walking, but he didn't start having problems with the toe-walking until about a year ago. I don't know if it would give you any peace of mind, but you could go to your regular doctor, and ask for a ck muscle enzyme blood test and it would tell you how well your muscle are functioning, then you could go from there. Like I said, I don't really have any answers for ya, but I understand why you're so worried about it, especially with it already being in your family. As far as my husband and I know, we have never had MD on either side of our family, so all this is very new to us.
Keep us updated and tell your dad to "come on and join us!!" We'd love to hear his experience.
CJ's Mom
Lori

michigani · 05-17-2008, 01:17 PM

Chris,

I could never bench press anywhere near 320 lbs. I was always one of the slowest kids in gym class, etc. A lot of adults that start experiencing MD symptoms try to tell themselves "I'm just really out of shape". But deep inside we know it's probably something worse. Here it is in black and white. In shape or out of shape a 25-40 year old adult should be able to:

Walk on your toes
Walk on your heels
Squat to the floor and stand without grabbing anything
Climb stairs easy and probably 2 at a time
Jump rope

Inability to perform these tasks are classic early symptoms. You sound like you can do much more than I could at 25. I was bench pressing 100 lbs max. With me, I always felt I was at the weak end of normal, but my weakness seemed to really kick in around 35. It's been slow but steady. Hope this info helps. Good luck to you.

Mark

malvasia08 · 05-17-2008, 08:32 PM

Hello Chris,
Your post finally convinced me to register on this site, because your questions were so similar to those that I had when I was in my 20's and early 30's. I have autosomal dominant Emery-Dreifuss, which was passed on to me via my father's side of the family. This type of MD is very close to LG1B, so I am familar with that type of limb-girdle, but LG1A may have some of the same symptoms. As far as contractures go, I walked on my toes from the time I was a toddler, and was never able to lengthen my Achilles by using the stretching excercises I was given. Certain muscle groups were weaker than typical, but, like many of the members of this forum, I always attributed my weakness to not being fit enough. I participated in some sports (volleyball, cycling, and tennis) through my 20's, but started noticing undeniable weakness around age 30. I'm not saying that I was an athlete, as I was never as fast or as strong as most of my friends, but I did work out with with weight machines around age 30. I was able to increase my overall strength, but could not use some machines at all. By the time that I was 35, my weakness was pronounced, and I started having trouble climbing stairs and getting up off the floor.

I am the first person to survive beyond age 40 on my Dad's side of the family. Because they died so young, their weakness was attributed to their heart problems (this was a long time ago, before Emery-Dreifuss was even known). EDMD affects the heart, and I have had a pacemaker for over 10 years. If you have any cardiac symptoms, especially arrhythmias, insist that your physician check you out. I started noticing an irregular heartbeat while in college, but since my muscle weakness was not pronounced, none of my doctors even considered a link between the two.

Muscular dystrophy affects everyone differently, but in reading these posts over the last year, I realize just how similar many of our struggles are. Be aware of your body, but try not to let your fears influence your quality of life. One other piece of advice I can offer is to enjoy activities that require muscle strength now, because you never know what kind of curves life will throw at you. Muscle diseases are not the only thing that can change your life. If you want to climb a mountain (and are able), do it! You can't buy back time.

Best of luck and health to you and your family.