Tuesday, November 30, 2010

The day started out not too badly and I thought it was going to be a good one. However, gradually John began to feel worse and then at 6pm he totally crashed. Had to go to bed and just wait for it to pass. He says these episodes where the meds are not working at all are getting worse. He certainly was in great distress. I gave him his 6:30 meds early along with a sleeping pill. He slept for an hour and then felt good enough to get up again. He managed to eat some ice cream but the last few days have been so bad that I have not been getting his 6 feddings into him - only about 4 each day - which is not remotely enough calories for him for a day.

One thumbs up for the morning but 2 thumbs down for tonight.

Monday, November 29,2010

The last two days have been quite bad for John. The meds just never quite work and so he is having a hard time. I have given him extra meds but they have not made any real difference. Mornings and evenings are the worse but all day has been a challenge.
The congestion does not seem to be quite as bad so I don't think we are having to worry about pneumonia. Just the congestion that comes from the meds not working properly.
He felt so badly that he went to bed early tonight in hopes he would feel better after he had some sleep. But so far he has not gone to sleep.
He has been trying to tell me something but cannot get the words out which is very frustrating for both of us. He shakes his head no when I ask if he needs something, so it is just a thought he wants to convey but cannot. Sometimes it is as simple as a thank you or I love you, but he will struggle for a long time to get it out. Tonight I told him to wait until tomorrow to tell me when I hope he will be able to talk - or at least whisper.

Two thumbs down for the last two days;

Saturday, November 27, 2010

After such a bad day yesterday, today seemed to go somewhat better. John was able to sit up in his chair and watchTV from the late morning onward. He felt up to being left alone for a short time while Margie and I ran out to do some shopping.
But he has developed a bad cough again - it sounds to me like his chest is congested  - pneumonia???? Of course it has to happen on the weekend so we cannot go to the doctor until Monday.
As the evening went on he coughed more and more and the meds were less and less effective. He finally asked to go to bed early. He said it was the worst evening he had had - from my viewpoint there have been worse - but from his viewpoint it was bad enough to feel that way.
Yesterday I contacted the Home Care program in Langley and they are coming to do an evaluation on December 7th and see if there is any help they can offer me. I have asked for a therapist to come and show me how to move John easily - like into bed etc. My shoulder and back and taking a beating at this point.
By the way, our son Ted and girlfriend Sabrina became the parents of a beautiful baby girl, named Shyla, today. This is our 7th grandchild. Like all the others, we are too far away to see her but I know we will enjoy lots of pictures on Facebook.

We had a lot of snow on Thursday but is is almost gone now.

Have to make this a one thumbs down kind of day.

Friday, November 15,2010

This was another very bad day for John. He did not even sit up in his chair, or turn on the TV until late in the afternoon. He was feeling pretty rough when I put him to bed tonight.
Two thumbs down for today.

Thursday, November 25, 2010

Happy thanksgiving to all our American friends!!
One month until Christmas - wow, time to get busy. And we have the snow to prove it - but it will likely be gone by this time tomorrow.
Today was another pretty good day for John - I was able to go to the morning coffee hour in our condo today and also visit some friends in here and help them with their computer this afternoon. John did fine on his own while I went to those things.
So another one thumbs up day. Hallelujah.

Wednesday, November 24, 2010

Today was a much better day - although John did not feel too well in the morning, the rest of the day went quite well. He has not had any noticable side effects to the new meds so far. He will be on the full regime of them starting tomorrow.
Our car is having alternator problems so I am not supposed to drive it much until Zeke can fix it the middle of next week. Well there is supposed to be snow tomorrow so I don't want to go out anyway!!

One thumbs up for today!

Tuesday, November 23, 2010

Well, not as bad as yesterday (PTL) but not as good as usual - whatever that is.
John continued to have the waves of rigidity etc. but they were not as bad today or as often. Although he did not feel well, and spent most of the day on the couch, it was a definite improvement.
I called the neurologist and actually got his nurse immediately. She said she had a meeting with the doctor in an hour and would tell him about John. She called back several hours later and said that although the doctor did not know what was causing the problem, or what to do about it, he had done an internet search and was prescribing another med to help with the rigidity.
So I picked that up this afternoon and John had his first dose this evening. He will not be on the full dose for several days, so we may not see any improvement immediately.
Please pray the new med will help.
Pray for wisdom for all of us as we have to make decisions about further treatment etc.

Not sure what kind of a rating to give today. I could give it one thuimbs up comparing to yesterday, but a one thumbs down comparing to his usual day.

Monday, November 22, 2010

John had a really bad night last night and a worse day today. This was one of the worst, if not the worst  day he has had. The meds did not click in at all - he spent the morning and early afternoon in bed and then moved to the couch. The muscles were in spasm and cramping on and off throughout the day. This was a new symptom (the severe symptons, then a bit of releif, and then they would return full force.) He was in much more pain than he has usually has - or maybe it was just much more prolonged. He was feeling so awful that he did not want me to leave his side at all which made getting any work done rather difficult.
He has gone to bed now and I am praying that he will sleep through the night tonight. He must be worn out.

Two - two thumbs down for today (is that allowed?).

Sunday, November 21, 2010

I have not been writing in the blog every night because I feel like I am just repeating myself as it seems like each day has been similar with  the meds not working well. Today has been no exception.
John seemed to be OK this morning and was up in his chair when I went to to  church - however, he called me half way through the service saying he needed me so I came right home. He was in some distress with the meds not working and needing more. When they don't work well, his muscles stiffen up and so does he. He was so stiffened out that he was slipping out of his chair, even though the foot rest was up.
I don't know if I will be able to continue to try to go to church.
The effect of the meds came and went all day and then he had a really bad time for several hours this evening. He was feeling a little better by the time he went to bed.

Please pray that we will find someone to stay with John on Sunday mornings while I go to church
Please pray that these really bad "attacks" he has been having the last week or so will stop and the meds will work as they should
Please pray that when I call the specialist in the morning he will take it seriously
And pray that John will sleep through the night so we both get the sleep we need.


Two thumbs down-

Wednesday, November 17, 2010

Today  has been a quiet day. Tonight was a little better in the early evening. Margie came over and we watched a DVD together and he enjoyed it. But the 9:30 meds did not work and he had a very bad time. He said it was the worst yet - I am not sure he can really remember from one time to the next to compare - but it was severe. He went to bed and after about half an hour the sleeping pill knocked him out. He will sleep for a few hours and then be up for a lot of the night.

One thumbs down.

Monday, November 15, 2010

Half way through November already - I can't believe it.
In spite of spending most of our time just getting through another day, time still is going very quickly.
John was up for a good protion of last night and I had to give him meds two extra times - 3:30 and 6:30 which is most unusual. However, he felt good this morning. It was only in the evening that the meds failed to work properly and he ended up feeling pretty awful. When the meds don't work his muscles freeze up and he becomes rigid. When that gets bad, his body will not bend and he cannot sit up. Tonight he was so bad he had to lay down on the couch until the extra meds finally clicked in.

two thumbs down

Sunday, November 14, 2010

The struggle continues.
Last night John got up in the middle of the night without waking me and fell in the bathroom. I had a very difficult time getting him up and back into bed. It was exhausting for him.
Today was a bad day. I got dressed for church but when I gave him his 11am meds he asked me to stay home because he was not feeling well. He managed to get through the day without extra meds but asked to be put to bed at 9:30pm because he felt so poorly. I gave him his sleeping pill in hopes he will go to sleep. I know it means he will be up later tonight and likely will not sleep well after that. So I am preparing for a long night again tonight. Oh well, I will get lots of knitting done!!!

Please pray for the meds to work better and John to feel better.

Two thumbs down for last night and today.

Friday, November 11, 2010

The last few days have seemed to follow the same pattern - John goes to sleep at 11pm - wakes again in an hour or two - is up for several hours but feeling pretty good - then sleeps until late in the morning. When he wakes he feels fairly good - eats some ice cream. But as the day goes on, the meds begin to not work as well, and by evening he is feeling poorly and I am skipping feedings and giving him extra meds instead. By bedtime is he feeling pretty awful. But he goes to sleep...... and we begin again.

So one thumbs down again.

Wednesday, November 10,2010

The day started out fairly good. John was up for several hours last night but then slept until 10am this morning. He said he felt OK when he woke up. This afternoon Bishop Ron came over and visited and gave him communion. He was able to talk with Ron and enjoyed the visit. However, this evening, the 8pm meds just did not work at all and he had a very bad crash. By 9:30 he was in bed and I gave him his sleeping meds in hopes that he would go to sleep until the worst was over. He is asleep now - but whether that means he will wake again in an hour or so I don't know. It may be a very long night.

One thumbs down.

Monday, November 8, 2010

John slept well until 7am this morning and then needed to move to the couch. He went back to sleep and slept until 10am. So he had lots of sleep. however, once up, the day was a struggle with the meds not working well at all. We did get through without having to give him any extra meds, and he did get all his 6 feedings, but it was not a really good day.

One thumbs down.

Sunday, November 7, 2010

My mother would have been 94 today. She died three and a half years ago but we still miss her.
The last two days have been quite bumpy - meds never quite working, a lot of saliva. coughing and phlegm.
I did manage to get to church for the first time in a month.
I mentioned a few days ago that we moved in here a year ago and thinking back to that time, I realize how much has changed with John since then. Several people have asked me in what ways things have changed.
The ways are actually very numerous. A few that stand out are:
- when we moved in, John was still walking on his own, or with a cane, or on my arm .He now either uses the walker, or I push him on it, or in a wheel chair
- he was able (holding on to my arm) to go up and down the flight of stairs which leads directly to our car - now we have to go out to the elevator, down to the lobby and then I bring the car around to where he can get into it - we have to always take the walker with us
- he was able to get into bed by himself - I now have to pull him in
- he was able to get up out of his lift chair by himself - he now cannot do it without me hanging on to him and if he gets the chair up too high he slides on to the floor
- he was still able to eat food, and take his meds via mouth - now he has a feeding tube and about the only thing he takes by mouth is some ice cream - this is positive and negative. Positively, he is no longer losing weight and I can get his meds into him even when he is sleeping. Negatively eating no longer has any attraction for him, and so going out to a restaurant or having friends in for dinner, is not attractive either
- he was able to go out shopping with me and especially liked to go to Wal-Mart or Safeway, where he could drive their shopping carts around - he says he can no longer do that at all.
- although his voice was very weak, and he often spoke in a whisper, he was able to talk whenever he wanted to - now, especially in the late afternoon and evening  he cannot get his mouth to open so he can talk at all. The speech therapy has given him a louder voice when he can use it.
- he used to spend a lot of time on his computer, doing e-mail or playing solitaire - now he goes for days or even weeks without turning his computer on (so please send e-mails to me, not John )
- He was on 3 sinemet every 3 hours when we moved here, he is now on 4 sinemet every 90 minutes.
- an area that has improved is his sleeping pattern - when we moved in, he was not sleeping most of the night but all morning and into the afternoon - now he goes to bed at 11pm and usually goes to sleep. About half the time he sleeps through the night but he is up by 9:30 - 10:00am whether he sleeps all night or is up for part of the time.

Back to the present - I would have to say this was a one thumbs down day for John.

Friday, November 4, 2010

Today was much like yesterday. John slept through the night but had a bad morning and just a little better in the afternoon. Gus came and stayed with John while I went out to London Drugs to get more meds etc.
Otherwise not much to report for today.

Another one thumbs down day.

Wednesday, November 2, 2010

Tuesday night John had difficulty sleeping, and we were up for several hours before he could get back to sleep. But last night he slept through until the morning. However, he did not have a good day. In the morning he felt quite poorly, and the rest of the day the meds seemed to not quite hold long enough, so while he had not really bad crashes, he seemed to always be feeling like it could happen at any time.
It was a year ago yesterday that we moved to our new apartment. When I think about what John was able to do when we moved in, compared to now, I am reminded of how far his health has slipped in that time.
Margie and I go to Curves two or three times each week - when John is well enough. They had what was called a Chinese auction to raise money for breast cancer. Members donated all sorts of nice things, and then we bought tickets and put them into the envelopes of things we would like to win. I was amazed to find out that I had won three nice plants, some pretty pink placemats and some glass coasters.
They are starting something called Zumba, which is a form of exercise through dancing, on Saturday  mornings for one hour - so we are going to try it out on days John feels well enough to be left for that time.

Overall, a one thumbs down day.

Monday, November 1, 2010

John had another good night last night - slept through until this morning - me too. He also had a fairly good day today, with no significant down times. Thus we got several little jobs done that he usually does not feel like doing.
This evening we enjoyed a visit from another of our former students, Michel- Lyn Mattiussi, who is on furlough from her work in Thailand. She had spoken at Gateway this afternoon and then came over to see us. It was great to hear about what she has been doing. She will return to Thailand in January.

One thumbs up for today.