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Post by june on Sept 22, 2008 9:31:42 GMT -5
Feeling a bit sad today. It's Michael's 50th birthday today and spent last night lying in bed wide awake thinking that this is not how I imagined our lives to be. Wednesday I meet with the health care team (physician, physio, OT, nursing, personal care worker, dietition) at Leisureworld for an annual meeting. It's been just over a year since Leisureworld became Michael's "home". Gotta get out of this mood before I visit tonight for a little birthday celebration. Erica says she misses her daddy and maybe he could move back home if we had an elevator for him so it wouldn't be dangerous on the stairs. If only it were that simple. J
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Post by june on Oct 1, 2008 11:17:12 GMT -5
Michael had an appointment with Dr. Black at Sunnybrook yesterday and he went through the usual physical and mental examinations. The findings were basically that his cognitive abilities remain approximately the same but they are still puzzled by his physical presentation. Doesn't fit the typical ALS patient but there are definite signs of upper motor neuron disease progression. Although his general strength remains good, his balance and coordination is very poor which results in his inability to walk without assistance. They are going to do more genetic testing since the last test they did for a specific protein known to be involved with 40% of familial cases, was negative. In a couple of weeks Michael has an appointment with the ALS clinic so perhaps I'll learn more. This is such a learning curve for everyone, including the medical experts. Please let people know of this disease. Contact me if you want more info or would like me to speak to anyone directly. Donated part of the proceeds from the Friends of Mike event to Dr. Blacks FTD research fund and they were extremely happy and grateful. Every bit counts.
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Post by june on Dec 8, 2008 12:31:38 GMT -5
I am in the process of trying to get Michael a wheelchair. All this time we have been borrowing one from another resident and thought I should get my act together to get Michael his own. Michael had measurements taken at Sunnybrook and through the assisted living clinic we are trying to get some funding/assistance with the ALS society. I can't believe an assessment is $120 and the wheelchair will cost more than $4000 for something that is not even motorized! Yikes! Hopefully we can get one on loan from the ALS society in the meantime.
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Post by june on Dec 28, 2008 23:57:11 GMT -5
Yesterday was Rick's 50th birthday. I was feeling quite nostalgic since I had just come across an old picture from Michael and Rick's 40th birthday party at Linda and Steve's house. That was so long ago. Michael was home for Christmas morning. Took 3 of house to get him into the house - he really had a hard time maneuvering the stairs. We got him into the living room where the Christmas tree is and got him comfy on the couch. The girls gave him his presents while they proceeded to open their gifts. He sat and watched and his gifts remained unopened on his lap. Erica and Jaclyn went over to him and helped him by ripping the paper a bit to help him and he just stared. I helped him open the rest of the gifts while the kids opened theirs. He had a hard time sitting up and kept on falling over and eventually he just lay down on the couch and fell asleep. Got him back to the nursing home just in time for lunch.
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Post by june on Jan 29, 2009 22:11:43 GMT -5
A month has gone by since I've posted a message. It's been crazy busy. This is the first New Year's Day that Michael wasn't home to help bring in the New Year. The kids asked if we could still do Shogatsu since Ba-chan, Gi-chan and dad loved this day so much. It has been 2 weeks since I had seen Michael. I missed him and was anxious to go and see him. Jaclyn and I went before her hockey game and we found him in the tv room. We came up behind him and when he saw us, he gave us a huge smile. Unfortunately, Michael can't manage to move the wheelchair with his legs anymore. He seems so frail. He has such a hard time saying anything and said that Jaclyn was Erica and that Thomas was Jeffrey. One of the nurses said that Michael really likes one of the staff and seems to know her. I asked if Michael said anything about her and they said he told them it was Michele.
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Post by june on Feb 5, 2009 0:39:20 GMT -5
The nursing home called and said Michael is getting agitated when the staff try to get him changed. He is pushing them away and is such a change from the docile person he has become. This change along with his not using his legs to propel the wheelchair means the disease is progressing. It seemed we were at a plateau for a while but didn't last too long. The doc at the nursing home is putting him on yet another med to combat his new behavioural issues. On the positive side, I asked the staff to book Michael for a hair cut and he looks nice...really reminded me of the old Michael. The last visit was just me and Thomas and Michael couldn't say anyone's name but smiled at us and really smiled alot when he was watching reruns of Laverne and Shirley on tv. Go figure. J
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Post by june on May 9, 2009 0:53:53 GMT -5
It certainly has been a while since I've written anything here. I was thinking a lot about Michael today particularly since the fellow in Texas whose wife has FTD is going through a very rough time right now and is actually in hospice care. It sounds scary and she and Michael were diagnosed at the same time and have been eerily similar throughout the disease progression. I took Michael to his appointment with Dr. Black this week and I have decided that I cannot do it anymore on my own. Michael is not able to bear much weight on his legs and can't seem to comprehend that he needs to move from the wheelchair to the car and vice versa. I had parked in front of the nursing home and brought the Michael in his wheelchair to the door of the car. I was struggliing for 1/2 hour but he kept on trying to sit back down in the wheelchair. Finally the man who was driving a wheel chair van came by to help me. When we got to the hospital, I tried for another half hour to get Michael back into the wheelchair from the car. I was on the verge of tears when a wheel trans driver came up and asked if I needed help. I could have hugged the guy. The appointment itself was okay and confirmed that Michael is declining. He is weakening particularly in his hips so that makes it really difficult for him to stand. He is still able to speak in very low volume and sometimes opens his mouth but no sound comes out but will never initiate any talking. He may respond to your question but likely not. He still knows us and clearly recognizes us but most often cannot say our names. It really breaks my heart when he looks at the kids and they look at him expectantly....and then nothing. Michael does smile when he sees us and chuckles when we amuse him. He loves to watch the kids and even participates in throwing around the little green sponge ball that we pass around in a circle in his room. FTD really sucks.
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Post by june on Jul 9, 2009 21:21:21 GMT -5
Took Michael to his appointment at the ALS clinic. Barry A was absolutely wonderful in helping me get Michael in and out of the car - couldn't have done it without him! The sad news is that the disease progresses but they are still quite perplexed since Michael's ALS is still very different from anything they have seen. They have asked him to be a part of another study. I also signed the consent for autopsy. Wow, that was hard. It's what I dealt with everyday for many years in my job but when it is personal, it is so much different. An autopsy will provide much needed information in the hopes that it will advance the knowledge of this horrible disease and take us a step forward. Made me very sad though that it has come to this. Also, Michael is starting to get bedsores and that is definitely not a good thing. Michael is also forgetting to swallow so each bite he takes, he needs to be reminded to chew and then swallow otherwise he squirrels away the food and then tends to choke. Have to be more careful when I give him bits of his favourite dutchie donut.
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Post by june on Dec 29, 2009 15:04:09 GMT -5
Can't believe it has been so many months since I lasted posted but thought I would provide an update. Sadly, this disease is slowly taking it's toll on Michael. Sunday night, the nursing staff noticed that Michael's leg was a bit swollen and by Monday morning, his entire leg was swollen. The nursing home called for an ambulance and I met them at Scar Gen emerg at 10:30 Monday morning. After an ultrasound, blood tests, xrays, etc. it was determined that Michael has a large clot in his left leg. He was given a dose of heparin immediately after the diagnosis. This is going to be an ongoing concern now that he is not mobile and is a risk for all people who are bedridden. Now the challenge is to monitor the dosage to make sure that it is appropriate. Normally, his blood would need to be taken daily when first starting coumadin but it will not be possible at the nursing home so I will need to make sure that the staff are on top of this. Michael is still at risk that part of the clot will fragment and go into his lungs but hopefully not. Crossing my fingers! Today, we went to Scarborough Grace to the clinic where coumadin is monitored and they have made the first adjustment. We had an ambulance take us there and back. My very first ride in an ambulance and although it was an interesting experience, hopefully I don't have to experience it for any other reasons! Marty was wonderful and brought me dinner when we were at emerg and Kathy and Rick took care of the girls for the whole day/night and took them to the movies and fed them lunch and dinner. We are lucky to have such great people in our lives. Think I have rambled on enough now....gearing up for New Years Day and there is much to do as well as getting some stuff done for that thing called "work". Darn that gets in the way of life. Will post again likely in the New Year. Shin nen omedeto gozaimasu! Hope I spelled that right and for you non Japanese, Happy New Year!
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Post by june on Jan 21, 2010 22:08:00 GMT -5
My first post of the new year. Things have settled down with Michael it seems. His leg was swollen for quite a while but it seems to be pretty much back to normal now that they have his meds at the proper level. Thomas and Teralyn went to visit on their own and Thomas had a private talk with Michael. He came home to say that it was good and that Michael seemed to understand a lot of what Thomas was saying. Yesterday we had an appointment to set up Wheel Trans since I am not able to take Michael in my car anymore. So the appointment took about a month to get and we had to go to McGregor library where the "interview" took place. Wheel Trans picked us up at 12:45 at the nursing home, dropped us off at around 1pm for a 2:15pm appointment. They took us early since someone else didn't show up and we were done in about 5 minutes. Then we waited in the library until 2:50 when the van was scheduled to come back and get us. This process isn't very efficient but whatever. Apparently within the next 2 weeks, Michael will be set up so that I can arrange to have him picked up and dropped via Wheel Trans. Much easier but timing might be more difficult and more waiting for Michael. Doesn't seem like a big thing to wait but poor Michael gets so tired after so little.
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