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I was just diagnosed a couple days ago with LGMD.i have trouble with walking, standing, and stairs. What should I be doing and researching?

A myMDteam Member asked a question 💭
Milwaukee, WI

Along with my LGMD am. Also dealing with POTS, juvenile disc degeneration (aka herniated discs and arthritis in my spine), and frozen shoulder. I currently still work but it is not easy.

June 28
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myMDteam

First of all, a brand new diagnosis is a lot to process — especially when you're already managing other challenges and still working. That takes real strength.

With LGMD affecting your walking, standing, and stair use, here are some key areas to focus on right away:

Build Your Care Team
- A neurologist or neuromuscular Show Full Answer

First of all, a brand new diagnosis is a lot to process — especially when you're already managing other challenges and still working. That takes real strength.

With LGMD affecting your walking, standing, and stair use, here are some key areas to focus on right away:

Build Your Care Team
- A neurologist or neuromuscular specialist familiar with LGMD
- A physical therapist to help maintain mobility and strength safely
- An occupational therapist — especially important since you're still working, as they can suggest ways to adapt tasks and conserve energy
- A cardiologist and pulmonologist for monitoring heart and breathing health, as some LGMD types can affect these over time Assistive Devices to Consider
Even small tools can make a big difference at work and home:
- Grab bars or railings for stairs
- A cane or walking aid for stability
- Long-handled reachers for daily tasks
- Ergonomic supports at your workstation What to Research
- Your specific LGMD subtype — there are 33 types, and symptoms, progression, and emerging treatments vary significantly between them
- Clinical trials and gene therapy research, which are actively being explored for LGMD
- Genetic testing if you haven't had it yet, as it can confirm your exact subtype and guide your care plan A Note on Your Other Conditions
Your frozen shoulder and spinal issues may complicate physical therapy recommendations, so it's really important that any therapist you work with understands your full picture. Be upfront about all of your conditions so your care plan is tailored safely to you specifically.

Regular check-ins with your healthcare team will help you stay ahead of any changes and keep working as long as possible on your own terms.

June 28
A myMDteam Member

Honey I am so sorry. I also have disc degeneration disease. I had a lower lumbar fusion surgery on disc 5 and 6. My cervical is holding on by a thread. My genetic panel showed LMGD 2q. My doctors really can't do much for me except medication and therapy at this point. I have 5 doctors 2 say FND and 3 say LMGD. The last dr I saw said either way treatment was therapy to try and keep the muscles as healthy as I could and use aids to keep from falling. Using aids when you can also gives your muscles the help they need to function longer in the day for you. If that makes sense. I use a motorized cart at the store so I can walk to see my granddaughter at her school. On days I dont use the cart I cant make it back to the car safely. Like I have had to lean against a pole until someone helped me to a chair. I fell on my arm and injured my muscle 7 months ago and it still hasn't healed. Our muscles dont heal. My doctor said "Dont fall". Water therapy has saved my life. I am even driving again. Get a pool noodle, a pair of water weights and find a heated pool, you will thank me.

July 1

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