Anyone with suggestions for "how-to" practical advice (books, videos, etc.) for helping our boys with activities of daily living that are becoming difficult?  For example - son can barely stand and pivot now so transferring from wheelchair, getting pants down, and getting on the toilet are becoming a two person job, but only one person may be home with him when he needs to go.  I can find plenty of info on school problems, social issues, etc., but not on day to day living problems.

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Hi Lisa, I do not have a video or book I can recommend to you at this moment that answers your questions.  We relied on our Occupational (OT) and Physical therapists (PT) to evaluate our son's needs and train us in dealing with all these areas of concern and transition, including determining the needs for adaptive equipment.  Most of the time, only one person was available to lift my son.  Our PT showed us how to due transfers using a variety of techniques from a proper lift posture, to sliding board, to using a urinal versus the toilet.  They were very helpful to our PCAs and me by helping to reduce injury to my son and those of us caring for him doing the heavy lifting so to speak.  I would recommend getting a clinical evaluation for both OT and PT services.  School PTs and OTs are a resource as well, but because their services are tied more to supporting educational objectives, you may not get all your questions answered or your son's needs met through them.

Hi Lisa,

I will look over what is available for practical information and post, but wanted to provide a few first steps. I have two older sons who have DMD and the best resource I know is other parents. Whether through this message board, FaceBook or attending the PPMD Annual Connect Conference, families readily answer questions about care with thoughtful advice. If your son has an IEP, part of the resources that are available to parents are assistance with Living Skills training. You would need to contact your Special Education administrator to find out what training they can provide. Additionally, you may consider contacting your local Department of Health/Family Services to learn whether your son qualifies for in-home care and how to apply. This is a long process and finding help is challenging, yet it may be an option.

Please also feel free to contact me with specific questions and I will work to getting you appropriate answers (brian@parentprojectmd.org). I will also post any useful information once I've had an opportunity to research this more fully.

Best regards,

Brian

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