My nephew with Duchenne's is now in his 20s and bedridden at home. He lives in a town that is nowhere near a treatment center, and even if there was one nearby, it is excruciatingly uncomfortable for him to go out in the wheelchair.  He has doctors but lacks a medical professional who completely understands the illness and is able to coordinate his care in a proactive fashion. 

For the family, I am looking for a traveling nurse who can consult on his case and train the local homecare aides how to provide nursing care beyond his present level, which is basically bathing and lifting his arms and legs. Of particular concern to me is that he is always on his back and I have heard of the value of turning a patient, for his comfort and to avoid ulcers, etc.

His location is 75 miles north of Syracuse, NY.  If someone knows of such a knowledgeable Duchennes R.N., anywhere in the U.S., who could consult as described above, I would gladly pay travel costs as well as the consultation fee. And thank you to anyone who comes forward with suggestions due to having been in the same situation.

Aunt Sharon

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Hi Sharon,

I live in Rochester, NY.  I had one family here whose son was also bedridden.  She did turn him and had a hospital bed that would allow him to sit up, and elevate his legs etc. .  She was able to get his some of his doctor's to make house calls.  The Mom ended up going to school to become LPN so she could manage his care. I forwarded this message to her for some more ideas. She used a portable electronic hoyer lift to reposition him.  As the disease progressed, repositioning and moving him was very painful.  She was able to obtain a computer that he could control with only eye movements.  I will see if I can get a response from her.  Her  son did pass away earlier this year due to complications from a respiratory infection. 

Hi Christine,

I am writing to thank you for your reply. It is very hard for me to bring up any of my nephew's healthcare issues with my family, and I needed the support and contact with someone like yourself who is dealing with similar concerns. I hope to bring my nephew and his mother into a support system somehow.  I do visit in the Rochester area sometimes and I see you have a Western NY support group.  I wonder if there is one for Northern NY (Watertown area). 

Bye for now.

Sharon

 

Christine,

Is there a way I can contact you? I will provide my email or phone number, if so.  I also think there was a DMD boy living at Fort Drum, Watertown, a year or two ago--saw that somewhere on this website. 

In general, how do I obtain a person's phone number or email to initiate a contact apart from these posted discussions?

Thank you.

Sharon

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