progressive bulbar palsy sharing

Do you know of any on line support group for those who have Progresssive Bulbar Palsy.
I think it would be beneficial to me as well as to others.


This discussion is related to Bulbar Palsy.

[farmgirl2345]

My father had bulbar palsy. Could I be of help to you?

[sydsehon]

You said "had"? What kind of progression did he have? I am loosing strenght in my left arm and shoulder and wonder if that is the ALS or just mucscle weakness--wheather to exercise or not?

[farmgirl2345]

My father had progressive bulbar palsy/ALS.  He was diagnosed at the age of 63 and lived one month past 65.  His started with swallowing and progressed from there.  He was walking the night that he passed away.

Have you actually been diagnosed with ALS or Bulbar Palsy?  My father was a tennis player, and being such, was in great shape, which probably helped his situation.  I would think that if you have been diagnosed, as much exercise as you want to do is good for you and certainly will not hurt anything.  Please let me know the answers to this question and then perhaps, I can offer more.

[sydsehon]

Yes, I have a son who is an otolaryngologist and a daughter who is a Speech/Language Pathologist who first discovered my condition. Mine began with slurred speech. I was then sent to the head of the Neurology Department at the nearest medical school. This was a year ago. Since that time my ability to speak has deteriorate. My ability to eat is limited to Ensure and pureed soups only. I have had a PEG tube by which I give mself adequate fluids and crushed medications.
Within the past month my left arm has become very weak and my fingers less agile. I depend on my iPad, texting on my iPhone and my computer for communication. I still drive but it is very limited. I know that the progression is unavoidable but so hope for the time of inativity to be short. I am 81 years old and have always been very active mentally and socially.
I feel very blessed that this did not strike me until I was past 80.
I appreciate all the help you can give me.

[Lizzyann]

Hello, my mum had Bulbar Palsy. She passed away on 20 Sept aged 90. she would have been 91 on New year's eve. I miss her very much. She had her PEG tube inserted on 16 June 2008 and did very well on it. She put on 10 kilos in the intervening 2 years. Her had swallowing problems for a long time.  She had a lump removed from her throat in 2001 and we never knew if her probs resulted from this. I think she probably had Bulbars Palsy for maybe 3 years. On a more positive note for you it was Aspiration Pneumonia which she died from. It is very important for you to watch what you eat. My mum started vomiting in the summer time and on 31 Aug she vomited and a lot went back into her lungs. This did the damage.  I should have had the dietician check her feeding and I regret this very much. If you look after yourself and watch you dont aspirate you should manage very well for several more years. Elizabeth

[pALSIED]

i AM 82 YRS. OLD AND HAVE BEEN DIAGNOZED WITH bULBAR pALSY.  i TOO AM GLAD THAT IT HIT ME AT THIS AGE