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How do we find someone to help us set up the house to be safer for our son with Becker's MD? Our Kaiser won't send anyone.

A myMDteam Member asked a question 💭
Vancouver, Portland, North Coast, WA
February 15
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myMDteam

How can you find help to make your home safer for your son with Becker muscular dystrophy when your insurance won't provide assistance?

There are several ways to get the help you need outside of your insurance provider:

Contact these organizations for guidance
* Muscular Dystrophy Association (MDA) Care Center Network - they Show Full Answer

How can you find help to make your home safer for your son with Becker muscular dystrophy when your insurance won't provide assistance?

There are several ways to get the help you need outside of your insurance provider:

Contact these organizations for guidance:
* Muscular Dystrophy Association (MDA) Care Center Network - they can connect you with specialists who understand home modifications
* Parent Project Muscular Dystrophy - offers resources for finding certified care centers
* CureDuchenne - can connect you with other parents and specialists
* MDA Resource Center - available by phone or email for direct assistance

Ask your son's healthcare team:
* Request a referral to an occupational therapist who specializes in home modifications and can recommend specific assistive devices
* Talk to a physical therapist who can assess mobility needs
* Ask to speak with a social worker at your local children's hospital for advice and resources

An occupational therapist is particularly helpful because they can evaluate your home and recommend specific modifications like grab bars, furniture risers, lever-style door handles, and bathroom adaptations.

If cost is a concern, organizations like the Muscular Dystrophy Family Foundation and Parent Project Muscular Dystrophy may offer financial assistance for home modifications and assistive devices.

February 15
A myMDteam Member

An observation if it hasn't come up. The difference between Duchenne and Becker's MD is that the gene that makes dystrophin, which tells muscles repair, produces NO dystrophin in Duchennes but some in Becker's. My son is 45 and we have only learned some things in the last couple of years, despite a diagnosis at age 5. Following his heart condition (remember , the heart is a muscle and is affected) and keeping him from becoming overweight will help a lot. We also went to a conference (free, including hotel and food!) last year. Ask MDA if there is one near you. We attended in Seattle. Very encouraging.

June 16

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