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Post by june on Mar 11, 2008 22:38:03 GMT -5
Today we were at Sunnybrook from 10am until 4pm. Michael had an MRI and then an appointment with Dr. Black. We discussed results of his SPECT scan, MRI and cognitive testing from January 2008. His SPECT scan shows a little change as well as the MRI showing more frontal lobe shrinkage but the biggest change is his balance and his cognitive abilities. Not walking much anymore and although he can still talk, does not seem to want to talk much and often says really random things out of context. It was a long day and I'm pooped. Rick and Stacey have taken the girls for a few days since it's March break. They have been awesome!
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Post by june on Mar 22, 2008 18:30:17 GMT -5
Michael hasn't been complaining about his throat and when I ask him if it hurts, he says no. I just got back from a business trip this week and we went to see Michael. I asked them to try minced texture instead of pureed and thought it would be no problem. Michael started grimacing every time he took a bite and started to refuse to eat. I guess we're back to square one.
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Post by june on Apr 3, 2008 21:46:24 GMT -5
This past Monday I took Michael to Centenary for his gastroscopy. I thought they were just going to sedate him but they ended up putting him right out. I got to watch the procedure and saw Michael's throat, stomach, duodenum......very cool. Apparently everything looks fine with no inflammation, no polyps, no nothing so I guess his throat issues are stemming from his FTD/ALS and there's nothing anatomically wrong. Michael continues to eat pureed food but doesn't seem to mind at all. When I got him back to the nursing home, he wanted to go right to sleep so I tucked him in and off I went. This is such a roller coaster ride and sometimes it feels so overwhelming.
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Post by june on Apr 9, 2008 22:34:44 GMT -5
Yesterday was Michael's appointment with the ALS clinic (Dr. Lorne Zinman). This clinic is great. The coordinator is Myrna Moore and she is absolutely wonderful. Dr. Zinman said that his ALS symptoms are not typical and it's almost like he has some ALS but not all and some symptoms like Parkinsons. Confusing and frightening at the same time. The speech language pathologist and the physiotherapist also came to see Michael. The speech language pathologist is going to schedule a video fluoroscopy test where they actually look at foods and liquids travelling down after swallowing and hopefully they will be able to determine what is going on with Michael's swallowing. The physiotherapist has recommended sessions with a physio person who specializes in neuro. This is a private service that costs $100/hour and Michael will need a number of sessions and they will help him with his balance and walking and will also try and determine if he would be helped by a walking aid. The doctor asked him if he knew my name and what my relationship was to him and he said "she's my wife, June" in a rather emphatic way. I was so happy to hear him say my name since I haven't heard him call me by name for over a year. Wow, small things really make me happy these days.........hmmm and it seems small things make me angry too!
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Post by june on Apr 15, 2008 22:59:42 GMT -5
Visited Michael tonight and for the first time, he couldn't remember the names of the kids. When we got there, he had a very distant and blank look in his eyes and I asked him three times for each child what their names were. In the end I had to tell him and then he nodded and agreed. I left in tears and we were all really quiet in the car on the way home. Still feeling very sad..........
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Post by june on Apr 23, 2008 22:32:13 GMT -5
Last night Michael remembered the names of our kids but then 15 minutes later looked blankly at them and shook his head when I asked him to call them by their names. He couldn't remember my name either. We looked at our wedding picture and he could name 2/3 of the people, especially Marty, Dawna, Rick and Phil. This morning the nursing home called to say they found Michael on the floor. Apparently, he had tried to get from his wheelchair to his bed and fell and couldn't get up. The doctor checked him out and he didn't get hurt - thank goodness.
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Post by june on May 12, 2008 21:40:22 GMT -5
The girls and I went to see Michael tonight. He was in bed but I asked him if he wanted to walk a bit (as I always do) and he nodded that he did. Normally he can walk pretty much the whole way around the floor but tonight he could only do 1/2 the floor. He seemed so shaky tonight.
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Post by june on May 14, 2008 21:59:34 GMT -5
Just got a call from the nursing home. Michael fell again. Looks like he was attempting to get from his chair into bed. The nursing staff found him wedged in between the night stand and the bed with a bump on his head. He gets very agitated when other residents try to talk to him but he's okay with others. This disease really is keeping the staff at Leisureworld on their toes. They keep asking me what to expect next. I wish I knew. Only thing I can tell them is that this will progress..........I wish I had a magic wand that could take this all away. I keep looking at pictures of Michael and the family and it seems so long ago that we had a "normal" life.
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Post by june on Jun 3, 2008 14:18:50 GMT -5
Michael is scheduled for a video fluoroscopy tomorrow at Centenary. This is live imaging to see if they can figure out his swallowing issues. So glad that Stephen is here so that he can help me with getting Michael to and from - that will be a big help! Will post the results of the test later on. J
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Post by june on Jun 11, 2008 12:24:32 GMT -5
Stephen was here to help me take Michael to Centenary for his video fluroscopy - made things much easier for me to manage. We were in the room when they were doing the test and basically what they do is have Michael swallow different foods and liquids that have barium in them. They then watch to see the path that the food or liquid takes on the way down. It was really interesting to watch. The end result is that is looks as if there is nothing anatomically wrong and everything was going down the right way and the speech pathologist felt that the problem was that his disease was progressing in the way that he doesn't have the strength to chew anything substantial and basically loses the energy to continue to chew. I had never thought of it that way but agree with his thoughts. This would explain why Michael was having chest pains since he didn't chew his food properly, but would swallow anyways and food was probably getting stuck and causing pain. Since switching to pureed food, he hasn't had any pain and this also makes sense. So the disease progresses and takes its toll by not just Michael's brain not functioning properly but by weakening his body as well. This disease really sucks and it just increases my determination to make more people aware. Stay strong and healthy, June
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Post by june on Jun 30, 2008 14:35:16 GMT -5
Feeling a bit sad thinking that this will be the first JCCP that Michael has missed in 31 years. I was thinking back 13 years ago when Jaclyn was hospitalized for a week when she was 2 months old. I was staying with her at the hospital and couldn't go to the picnic (the only one that I've missed in 31 years) and Michael rushed back from the picnic to be with us. In 1977 Michael took me to the picnic for our first "date" and exactly 12 years later he proposed to me at the JCCP. These are the kind of memories that make my eyes water.....
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Post by june on Jul 17, 2008 8:09:49 GMT -5
Thomas turned 16 last week and we saw Michael the day after and I asked him how old Thomas was. He shrugged and said, 17? I said that he was 16 and he laughed. He couldn't remember how old the girls were but remembered their names with a bit of hesitation. Today Michael is going on his first bus trip with Leisureworld. Apparently they are going on a picnic and "fishing" at a pond in Markham. The nursing staff said that he this is the first time he actually said he wanted to go on a trip so I agreed but am a little worried. He needs a lot of one on one and hopefully this will be the case while on the trip. Hope everyone is having a great summer, J
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Post by june on Jul 21, 2008 8:28:28 GMT -5
Michael's picnic/fishing day trip with the nursing home turned out okay. They did determine he will need one on one but they are willing to do this so it's good that he actually gets to get out a bit even though he stayed in his wheelchair the whole time. Says he enjoyed it but it's kind of hard to tell. Told him I was going away this week and would he miss me and he replied with a laugh then nothing.
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Post by june on Jul 28, 2008 7:51:37 GMT -5
While I was away on business, Thomas accepted Michael's volunteer service award for 30+ years of community service for the JCCC. We took the award in for Michael to see yesterday and he ever so slightly smiled and then turned away from me on the bed. I'll put the plaque up on the wall for him but not sure if he realizes what it means.
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Post by june on Sept 4, 2008 21:26:31 GMT -5
Sorry for such a long time between posts but it's hard to post when things are not particularly good. There is no news to relate and each visit to Michael seems almost routine. He continues to decline but I will try to update more regularly. Michael cannot walk without alot of support. He can walk about 5 to 10 feet while shuffling. Erica actually counted and it took him 37 steps to go about 7 feet the other day. Funny the things that kids notice.
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