catcaniac
Distinguished member
- Joined
- Dec 11, 2010
- Messages
- 189
- Reason
- Lost a loved one
- Diagnosis
- 12/2010
- Country
- US
- State
- North Carolina
- City
- Sneads Ferry
Just wanted to update everyone on our visit to the Duke ALS clinic. It was a very long day and my husband actually gave out before the Duke clinic did. Dr. Bedlack and his staff are awesome. Of course one final EMG was the slam dunk for my husband's ALS diagnosis. The doctor basically took a few more vials of blood on the 1% chance that it could be anything else and to do the test for a genetic link. We left with a definite ALS diagnosis and about 9 prescriptions, one for the Rilutek medicine and the others for equipment. They are already sending someone from home health care to do a breathing study on him as the Dr. did not want to wait a month until our next visit. I am pretty sure my husband will need a bi-pap or something soon. He also went ahead and discussed the feeding tube. He mentioned that he usually doesn't like to discuss these things on the first visit but due the rate of progression he felt he had to. My husband is pretty reluctant about that but the doc said that if his breathing decreases much more he won't even be able to do it. I would like advice because his mom, dad, and myself feel we should push him a little bit to go ahead and do that soon as if he doesn't, I don't think he really understands how little time he might have left here. My husband is young (I am 9 years older w/2 sons) and a bit naive at times, although we don't treat him that way. He was never married before or had children. He is painfully thin and if not sitting up properly has a great deal of difficulty swallowing anything. The social worker at the clinic is amazing and has already jumped on many issues. At least we don't feel so alone anymore. Eric's dad was awesome during the whole trip and must be exhausted after physically transferring Eric over 10 times in two days. They are looking to get us a loner power chair until the disability comes through and they add medicare. Then he may be able to get a custom chair as his 6 ft. 3. frame doesn't work too well with the conventional. We are also looking at finding a used accessible van as the past two days were almost impossible with trying to get him in and out of a car. It was good that they kept us busy asking questions as too much down time allows all of us to think of how quickly he is slipping away from us. Thanks to everyone on this forum who has helped me through these times before we got any support. Maybe as we go through this I will be able to return the favor and help others here to find answers.