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Post by june on Jan 3, 2008 2:13:07 GMT -5
Hi Everyone, I will be adding some journal entries here soon so please check back here within the next few days! Thanks, June
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Post by workingmom on Jan 4, 2008 9:02:51 GMT -5
Michael had a bit of a scare a few days ago. We were in acute care emerg for 22 hours...all is ok for now. Will post more details.
/j
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Post by workingmom on Jan 4, 2008 9:05:51 GMT -5
Everything is ok now but it definitely was a scare. The hospital has no experience with this disease so they were running him through the whole host of tests and couldn't determine anything.
By that point, Michael's chest pain had lessened and I didn't want them to admit him since I didn't think it would do any good. I think this last episode was basically his disease progressing.
/j
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Post by june on Jan 7, 2008 12:11:48 GMT -5
Got back yesterday afternoon from Thomas' hockey tournament in Ottawa. Unfortunately he didn't play since he broke his collarbone a couple of weeks ago but we went anyways! Visited Michael last night and although he is now walking again and has no chest pain (the reason he was sent to emerg), it seems like his legs don't want to cooperate. He needs reminders to move his legs to walk at times but at least he is able to still walk! Same thing is happening with eating. He needs a lot of assistance eating and if he isn't fed, then he will often just sit at the table. The nursing staff tell me that he eats approximately 20% of his meal on his own and often times will get angry at them if they try to help. He can't afford to lose anymore weight since he has dropped 12 pounds since being admitted in August 2007. Starting to drink Boost to get more calories into him - hopefully that will help.
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Post by june on Jan 9, 2008 16:12:24 GMT -5
I forgot to do an entry on Jan 1 so I'm a little late....... Brought Michael home for his favourite holiday. We normally have around 70 people come over and we do things a little differently than the traditional Japanese New Year's stuff. We have sushi, king crab legs, Dungeness crabs, lobster, salmon, etc but this year we pared it down quite a bit. We had a nice crowd and I brought Michaael home at 5pm. He sat at the table the whole time and seemed content but it was hard to tell. He didn't eat much and what he did eat, I had to feed him. I asked him if he was tired and he nodded so before 8pm, I took him back to Leisureworld (with the help of my super brother in law, Tim) and left my house in the fully capable hands of my mom and sister. It was kind of sad. I don't know what I was expecting but there was a part of me that thought he would instantly light up, smile, laugh, interact and eat..........silly thought.......I know very well that isn't about to happen but it still crosses my mind. These are the times when I start to think of what he was like before and it makes me teary. Okay, enough of that. Sniff, sniff.
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Post by june on Jan 10, 2008 14:14:49 GMT -5
Got a call from the nursing home and Michael is having some difficulty eating. He is not eating much and is gesturing that his throat hurts so the nursing home wanted to do a consult with a GI doc but I want him to see a speech language pathologist first. I think that this is the ALS part of his disease, not the FTD. With ALS, there is difficulty with extremeties and swallowing becomes more difficult. Called my friends at Sunnybrook and they have already started making arrangements to get a speech language pathologist in to see Michael.
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Post by june on Jan 16, 2008 23:51:28 GMT -5
Meeting the speech pathologist at the nursing home tomorrow morning at 8am. Michael's food is being pureed right now since they are finding that he is able to swallow it easier. He's lost more weight - down to 106 pounds.
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Post by june on Jan 17, 2008 23:28:08 GMT -5
Met the speech pathologist at the nursing home this morning. Can't figure out why Michael is having difficulty swallowing. She suggests a GI doc to do a barium swallow. Lots of appointments in the next bit including an appointment with a genetic counsellor at North York General, cognitive testing, SPECT scan and MRI at Sunnybrook and the GI doc at Centenary. Thank goodness Inter Medico (my workplace) is so wonderful about this all. They are all so supportive and I can't imagine how I would be able to manage this all if I worked someplace else!
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Post by june on Jan 24, 2008 23:49:25 GMT -5
It was a long day. Michael had a full day at Sunnybrook. First he had 3 hours of cognitive testing and then it was followed by a SPECT scan where they inject radioactive dye and then scan the brain to see live images. No results yet but it will determine how quickly he is progressing. We didn't get back to the nursing home until 3 something and poor Michael was very tired and had trouble walking. On another note, I have an online support group through Baycrest and one of the other members said that many people he talks to about FTD has referred to the article from the Globe. It makes me feel great that the word is getting out there!
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Post by june on Feb 3, 2008 15:10:46 GMT -5
Got a call while I was away in Santa Barbara that Michael fell while attempting to get up from his bed. He was not injured but it is becoming more difficult for him to walk. Some days he is in a wheelchair all day, some days he can walk. He's getting weaker but I have asked the nursing home to keep him walking as much as possible (without risking safety) because I feel that once he starts becoming totally dependent on the wheelchair, he will decline even more quickly. Feeling a bit down today thinking about Michael and all that he is going through.
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Post by june on Feb 4, 2008 22:07:42 GMT -5
Took Michael to North York General Hospital for genetic testing. Dr. Anne Summers is the geneticist. She has requested DNA testing for MAP-T protein as a confirmation for FTD. This test is not being done at North York but in Tulsa, Oklahoma. I can't believe that this is not done here in Canada. Ohip covers these tests being sent out of the country but millions of dollars are being spent by North York sending these (and other DNA tests) to the US. Results will likely be back in approximately 2 months and he will have to go back for more if this turns out to be negative. Nothing is simple.
The parking there is horrendous. I have a handicapped permit for the times I take Michael in the car but I couldn't find a spot anywhere and drove around for 15 minutes. Finally found a handicapped spot and it was literally on the other side of the parking lot from the main door. Poor Michael. I couldn't drop him off at the front door so he had to walk to the main doors and then I got him a wheelchair for the rest of the time we were at the hospital. He had to walk out again to the car afterwards. His legs were very shaky by the time we walked to the car.
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Post by june on Feb 6, 2008 22:35:01 GMT -5
Today I took Michael to Centenary for his GI consult. The driving was not great but okay but the parking lot at Centenary was crazy. Couldn't get a handicapped spot and Michael had to walk quite a ways. His legs just don't want to cooperate and I have to remind him to take steps. Dr. Keith Wong was the GI doc we saw at the Digestive Disease Unit at Centenary. He wants Michael to have a gastroscopy to figure out why he is having difficulty swallowing. He will mildly sedated while they put the scope in his mouth and down his throat. Hope he tolerates it okay. I'm a little worried about the procedure but I'm hopeful it will be fine and they will figure out what is going on. In the meantime, Michael seems to be tolerating the pureed food much better and now has to use a straw to drink. Went outside to shovel the snow tonight after Erica's tumbling lesson and my neighbour, Wayne across the street came out to say that he has called his snow clearing service to do our driveway tonight. He said it was his New Year's present to us. I am very thankful.........shovelled for about an hour and got one strip down the side of the driveway done and the front steps.
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Post by june on Feb 9, 2008 23:19:27 GMT -5
The nursing home called yesterday to say that Michael was refusing to eat saying he had already eaten. I went to see Michael today with the kids and he had just finished eating all his lunch. I guess there will be up days and down days..........
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Post by june on Feb 15, 2008 9:07:46 GMT -5
Last night I went to see Michael for Valentine's Day (Thomas also went) and he was lying in bed ready to sleep so we stayed for a few minutes and proceeded to leave but ran in to Marty and Kevin Kobayashi! Went back to visit, took some pics, talked for a bit and left. Nursing staff are saying that he has been 100% in his wheelchair for the last couple of days.
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Post by june on Feb 26, 2008 10:03:53 GMT -5
Speech pathologist is going to see Michael on Friday to assess whether or not he can tolerate minced food instead of pureed. The pureed stuff looks pretty gross but Michael doesn't seem to mind. He apparently has gained a bit of weight so it's a good sign but his legs continue to weaken.
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