Hi, all. I'm a Kennedy's Disease carrier, and my father and uncle are living with the disease. For several months, I've been scouring these forums and the KDA website for information and encouragement. I'm so very grateful to everyone who posts.

My father is midway through an ordeal that began with a misdiagnosed bacterial infection. Two months ago he was able to transfer himself from his wheelchair to his bed using a sliding board, but the infection and treatments took a toll on his strength and on his breathing. He's currently at a rehabilitation center, trying to wean off the ventilator with the eventual goal of breathing unassisted during the day and using a BiPAP at night. The weaning process is not going particularly well.

It seems that many SBMA patients are able to do well without a ventilator, but if anyone has experience with assisted breathing technologies and methods, I welcome advice and/or insights.

Deb

Deb, I am sorry to hear about your father's health issue. I hope your father has been assigned a physical therapist. There are some good exercises that help improve lung capacity and make breathing easier. Below are a few examples:

• 1. Hard coughing: Several times a day cough hard using your diaphragm muscles to expel the air.
  
• 2. Abdominal breathing: Several times a day breathe deep into your abdomen ... initially watch the expansion of your stomach as you breathe. Empty your lungs using the abdomen to expel all of you air.
  
• 3. Bend over and breathe: Several times a day while sitting, lean over your knees and breathe comfortably several times.

Also, if your father has problems breathing through his nose, consider using something like 'BreatheRight' strips to help keep the nasal passage open.

Thanks, Bruce. Your blog has been inspirational.

Deb, Sorry to hear your dad is going through all of that. I suggest a good respiratory therapist too so he can get the best advice on the breathing. Has he been to an MDA clinic? If not, check to see if one is near him as there he would see a host of different people/Drs who can help too. He pays what insurance covers only (or used to be?)

My very best for a prompt recovery.

I don't think he has been to an MDA clinic. That's a good idea!

Deb, yes, the MDA clinics can be quite good especially if you have the right doctor. You can locate a clinic near you by visiting the MDA website and do a search for the clinic nearest you by entering your zip code.

Deb, MDA can be of great assitance. Ours really doesn't seem to know too much about KD but they do assist with wheelchair repairs, have a lending closet, we attend fundraising events which are a lot of fun and get the magazine. You can register on the MDA site, find the place closest to you and call them to make an appoint. Ours needed the DNA test results to admit my husband as a patient.

Hope your father is recovering and feeling better.