Although I hate hearing it, I'm not sorry that you posted. This is a PD forum, and PD is a monster. It's open to anyone, anywhere, along any road. Your husband is too young for this, but obviously wise to keep his spirits up and I'm glad you have help. My thoughts and prayers are with you both. I hate this disease.
paula
Quote:
Originally Posted by gaykir
It is interesting to us that this topic should come up now. Kevin has had periodic swallowing problems for several years. In fact, two choking epidodes are what finally forced us to get a diagnosis. He has always been extremely active spyically so the disease was masked for many years.
He recently failed a bariactric swallow test - in fact it was so bad, they were unable to complete the test. He has been on a prureed diet since then but even that is becoming an issue. We've had many lenghy discussions about the situation and his decision is to refuse a feeding tube. We have been through all the speech & occupational therapy and even used a "power lung" to help but in the end there is no recourse at this point other than a tube which brings it own set of issues.
He is currently under the care of Hospice Plus and he has had his body accepted for parkinsons' research at UT Southwestern med school. It is his desire to "make sure it was all worth something". He is completely aware and keeping a sense of humor. He is now telling folks who ask how he is doing that he is getting ready to go back to school.
The saddest part of this is that he is just 60 years old. He was diagnosed in Feb 2000 and had DBS Feb 2007. I don't mean to scare you. Not everyone with PD experiences these swallowing issues. Just thought I'd share where we are on the swallowing road.  |