donarden
Member
- Joined
- May 28, 2009
- Messages
- 17
- Reason
- CALS
- Diagnosis
- 03/2009
- Country
- US
- State
- ID
- City
- Wilder
My husband (Wayne - age 75) started out at the end of August last year with a slight speech problem. As the months progressed it became harder and harder for him to form words. Then he started having problems swallowing. By January, his speech was almost gone - he was still able to talk to family at Christmas with difficulty, but was able to pretty much eat everything the rest of us did at Christmas.
By late February his speech was completely gone. The only thing he can do now is make growly and humming noises. When he's exasperated or trying to get my attention, he growls.
While the weather was still cold (we live in SW Idaho) he only drooled when he came in from working out in the cold. Now, he drools constantly. Because he walks in such a stooped position, he drools on the table, the floor, the carpet, etc., which means mopping up the floor and cleaning spots on the rug pretty often.
He had a swallowing test Nov 5 and another one on Jan 28 because his swallowing had gotten so much worse. He now eats mostly pureed and milk shake consistency foods, although he can still swallow mac and cheese. He has an appt Thursday to see about putting in a PEG. He weighs 101.5 pounds. He has never been a big person, but now he's skin and bones. He weighed 112 # the first of January. A 10.5 pound loss for me would be no big deal, for Wayne that's a lot.
Between April 15 and May 15, he fell 5 times - blacking his right eye the first and last times he fell. Now, he uses a walker or wheelchair when we have to go in a store or for an office visit. I won't let him outside without someone with him. He's been a farmer and extremely active person all his life and is sooooooo frustrated.
He can no longer shower by himself. We have a shower chair with an extension on it for getting into and out of the tub. Less than a month ago, he could shower himself.
In late March he was still able to do tractor work. Now, he wouldn't even be able to climb up on the tractor if he tried and it's just a little Ford tractor - not one of the big monster tractors.
I talked to a hospice rep last week. If we go with hospice now - he can't get a PEG, she didn't want him to have the sleep study he had last week (he's already on CPAP), she didn't want us to see the ALS specialist in Boise next week, or go to the U of Utah in Salt Lake City later this month. So, we decided to hold off on hospice for awhile. Although the drs have told us they think he has ALS, only last week did his neurologist finally say he was calling it ALS. Before, he said he thought that's what he had.
Wayne also has Type II diabetes.
After reading this forum, I'm so scared of what is ahead of us. This is happening way too fast.
Thank you for having the patience to read all of this!
Donna
By late February his speech was completely gone. The only thing he can do now is make growly and humming noises. When he's exasperated or trying to get my attention, he growls.
While the weather was still cold (we live in SW Idaho) he only drooled when he came in from working out in the cold. Now, he drools constantly. Because he walks in such a stooped position, he drools on the table, the floor, the carpet, etc., which means mopping up the floor and cleaning spots on the rug pretty often.
He had a swallowing test Nov 5 and another one on Jan 28 because his swallowing had gotten so much worse. He now eats mostly pureed and milk shake consistency foods, although he can still swallow mac and cheese. He has an appt Thursday to see about putting in a PEG. He weighs 101.5 pounds. He has never been a big person, but now he's skin and bones. He weighed 112 # the first of January. A 10.5 pound loss for me would be no big deal, for Wayne that's a lot.
Between April 15 and May 15, he fell 5 times - blacking his right eye the first and last times he fell. Now, he uses a walker or wheelchair when we have to go in a store or for an office visit. I won't let him outside without someone with him. He's been a farmer and extremely active person all his life and is sooooooo frustrated.
He can no longer shower by himself. We have a shower chair with an extension on it for getting into and out of the tub. Less than a month ago, he could shower himself.
In late March he was still able to do tractor work. Now, he wouldn't even be able to climb up on the tractor if he tried and it's just a little Ford tractor - not one of the big monster tractors.
I talked to a hospice rep last week. If we go with hospice now - he can't get a PEG, she didn't want him to have the sleep study he had last week (he's already on CPAP), she didn't want us to see the ALS specialist in Boise next week, or go to the U of Utah in Salt Lake City later this month. So, we decided to hold off on hospice for awhile. Although the drs have told us they think he has ALS, only last week did his neurologist finally say he was calling it ALS. Before, he said he thought that's what he had.
Wayne also has Type II diabetes.
After reading this forum, I'm so scared of what is ahead of us. This is happening way too fast.
Thank you for having the patience to read all of this!
Donna
