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For the first time in my entire life, I struggle with weight now. I've gone from being very athletic and outdoorsy to barely being able to walk anymore. Once around the block is pretty much my limit. I do try and do low impact exercise few times a week, but it consists mostly of stretches and a little bit of weights
I'm not asking for vanity, but because I think the more weight my legs have to carry, there harder it is for my muscles. I've talked to a dietician, but that was pretty much… read more

February 1
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Answer Summary

Members rallied around the challenge of weight management after significant mobility loss, with several sharing successful experiences using... Read more

Members rallied around the challenge of weight management after significant mobility loss, with several sharing successful experiences using GLP-1 medications like Wegovy and Ozempic, reporting substantial weight loss that improved mobility, reduced pain, lowered blood pressure, and provided a renewed sense of control over their bodies. Many community members emphasized the importance of physical therapy for flexibility and strength, aquatic therapy or senior water exercise classes as gentler alternatives, and finding providers who understand neuromuscular diseases rather than waiting until ideal conditions are met. A recurring theme was the frustration of weight loss being nearly impossible without exercise when living with muscular dystrophy, balanced with hope that medical interventions and adaptive movement can restore quality of life and ease the burden on weakened muscles.

A myMDteam Member

Hi Silvia,
The GLP-1s (Zepbound and Wegovy)
are amazing medications. If you have access to either, it would definitely be worth a trial.
After COVID, I struggled for a year to lose just 10 pounds primarily by reduced calorie consumption. It was a long frustrating journey. Without exercise, I found it impossible to lose more than the 10 lbs.
Wegovy wasn’t always easy to use.
I believe over half of patients who try to lose weight stop taking it due to side effects. I was able to maneuver through that and lost weight at about 1-2 lbs per week. Before you do the math, there were times of no weight loss, then the weight loss wound resume.
Other benefits of Wegovy for me include lower blood pressure, lower blood sugar, less stiffness and joint pain, improved cardiac function, better mood, reduced doses of BP meds, less edema and more I’m sure.
I’m just finishing my second month of lowered dose Wegovy. In order to stop losing weight. and in an effort to maintain my current weight my doctor lowered the dose to 0.5mg. (down from 2.4mg).
So far so good !!!

February 4
A myMDteam Member

Hi Silvia,
I’m a 79 y/o male with LGMD and recently started struggling with mobility (and weight).
After talking with my cardiologist and primary care physician it was decided that I needed to lose about 65lbs.
I was prescribed Wegovy injection to facilitate the weight loss in Jan ‘25. In the subsequent months I was able to reduce my weight by 65 lbs, 225lbs down to 160lbs. in 12 months. I lost 10” off my waist and can see my feet again.
I just started physical therapy yesterday to work on leg, hip and arm strength and flexibility. Time will tell if i can regain mobility.

February 3
A myMDteam Member

Silvia!
You might also look for a water exercise for Seniors class. I hear that they are easier on the body and a lot of fun.
Plus you get to socialize with a group of like minded adults. (men and women)
As an aside, I think you could get what you are looking for in a physical therapist from any recently educated PT. I don’t believe any PT is going to treat as if you were a 30 year old athlete trying to get back to their sport.
best of luck

February 6
A myMDteam Member

I am currently looking for a physical therapist that has experience with Neuromuscular diseases. Hopefully I'll find one soon.

February 5
A myMDteam Member

Silvia! You might also ask for Physical Therapy prescription. In retrospect, I should have started Physical Therapy as I was losing weight instead waiting until I reached my target weight.
PT at this point in our disease progression is mostly for flexibility. You may also get some small gains in strength. More importantly for me, I feel like I have some control over my body and over muscular dystrophy

February 4

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