Wednesday, June 30, 2010

A very good day today!! John had no "crashes". He managed on his own for an hour and a half while I had a frustrating time waiting in line at Canadian Tire and London Drugs - but I did make it back just in time for the next meds!!
At 3:30 we went over to Gateway for the Conference going on there. Arrived just in time for the first business meeting. John not only got through the meeting but felt well enough to stay for supper too. Mary Jean looked after him with some apple pudding and ice cream! The rest of us had lasagna. After supper I saw a bit of the "old John" when I asked him if he was ready to go home. "No", he said."I haven't talked to everybody yet!" We stayed for over another hour visiting with various friends. When we did come home he still felt good right up until bed time. We really are thankful for this good day.
Definitely two thumbs up today.
Prayer requests:
1. That he will continue to be able to attend at least the really important sessions of Conference - including the Gateway presentation tomorrow morning and the BBQ on Saturday.
2. That he will enjoy his appointment with the speech therapist on Friday and do well in telling his two jokes.

Tuesday, June 29, 2010

On June 29, 1967 our first son, John William was born in Kingston ON. Two days later, July 1st, as I watched from my hospital window, the Queen drove through the streets of Kingston. And 43 years later, she is in Canada again. Can you guess how old our son is??
John had a good day for most of the day. In the evening he had a bad session, but otherwise did well. The greatest distraction for him right now is all the sensations, different tastes, and quantities of saliva that the meds cause in his mouth. I get a running report of different occurances throughout the day.
He is still trying to find a new palm pilot on the internet when he feels well enough. Today his computer was acting up which caused him a lot of frustration.
WEC Conference starts tomorrow and I need to be there for parts of it.
Please pray that John will be well enough to attend, or at least well enough for me to leave him for a few hours at a time.
We'll give this a one thumbs up although it could almost be a one and a half.

Monday, June 28, 2010

Tomorrow is our son John's birthday - but since he lives in China that means it is already his birthday! Happy Birthday, son.
John had a good day today. No bad "atttacks" until bedtime -and that one was short lived. He spent a lot of time today on his computer because his PDA got washed and is no more - and he is trying to find another one that is compatable so he can download it's saved data from his computer. He uses an old style that is not carried by local dealers any more. He uses it for a lot of things and so really misses it. The encouraging thing was he felt well enough to pursue the info today.
Tomorrow our guests arrived for the next week. We are looking forward to having the three ladies with us.
Another one thumbs up day.
Prayer requests
As yesterday

Sunday June 27,2010

John had a fairly good day today - one period of the meds not working but otherwise not bad. He did not feel up to trying to go to church with me, but he managed well on his own during that time. Margie and Mary Jean Robertson came over for supper with us. After supper we had a time of singing and John told several jokes. He seemed to enjoy the time very much.
WEC Conference will be held at Gateway this coming week, so Margie will be moving in with us to free up her apartment and two headquarters staff, Karen Woods and Linda Nagel will be staying in the guest suite that is part of our Condo building. So things will be busy around here.
Prayer requests
1. That John will persevere with the singing and exercise
2. That the meds will continue to work as they should
3. That John will cope with the company well and feel good enough to get to some of the Conference meetings this week
A one thumbs up day.

Friday, June 25, 2010

Another reasonably good day in that the meds seemed to work fine. However, John felt "punk" all day, so did not do much - no singing or exercises. I had a lot of business and shopping to do that I had been putting off and so he volunteered to give himself his meds if I did not get home in time and that seemed to work fine. He can do it for himself if he is feeling OK - but if he is "having an attack" then he does not have the strength to do it. But that still gives me much more flexibility when I need it. That is very encouraging.
One thumbs up for today.
Praye requests:
1 That he will feel better tomorrow and that the meds will continue to work better
2. That he will feel like doing his singing and exercises
Thanks for the prayers everyone.

Thursday, June 24, 2010

John had a very good day today. He had no "crashes" when the meds did not work. He had once or twice he thought he was going to "have an attack" as he calls it, but then it passed and he was fine. He spent a lot of time this morning just talking to me and telling me how he was feeling about things. In the afternoon we were able to get his blood tests done, get his hair cut (with an hour wait!!) and he still wanted to get out of the car when we got to the fruit market and he came in and bought some local strawberries and some imported lychee (which he has loved ever since we had them in China.)
So although we did no singing or exercises, he got to walk and talk a lot.
I think today deserves a two thumbs up.
Prayer requests:
1. Praise for a good day
2. That he will have another good day tomorrow
3. That he will be able to do his singing and exercises
4. That he will sleep through the night

Wednesday, June 23, 2010

A day of ups and downs. After the good day yesterday I had hoped it would be repeated today. The meds worked well in the morning and part of the afternoon - although John complained of feeling "funny." Bishop Ron Ferris came and gave him communion - and also sang with him. But later on the meds suddenly did not work and he spent the next few hours feeling really lousy. Then they clicked in and the rest of the evening he was fairly comfortable. But he did not feel up to going for execise today.
So one thumbs up for the morning and one thumbs down for the afternoon.
Prayer requests:
1. For a solution to finding the right amount and timing of his meds
2. For the side-effects to diminish
3. That he will feel well enough to get to the medical clinic for blood tests and to the barber for a haircut.

Tuesday, June 22, 2010

PTL - John had a good day today. Yesterday the GP increased his meds and that seems to be helping. I checked with the neurologist today (well, the nurse clinitian) and she basically said go ahead and keep inceasing them if he needs them unless he passes out from low blood pressure or starts twitching all over the place from dyskenesia. So far no sign of either of those.
John did his singing today - although he found it hard to do - and also a few minutes of exercise. This is encouraging although one good day does not a victory make with this disease!!
I found today tiring because I had a lot to get done - meds to get, taxes to pay, groceries to buy (at two different stores) and because of the timing for the meds and feeding, I had to make seperate trips for each one - it seemed like a long day!!
One of our toilets has been causing problems and Zeke came and repaired it for us today. Thank you Zeke!!
It was a two thumbs up day.
Prayer requests:
1. That the meds will continue to work well without having to increase them any more
2. That John will find singing comes easier and he can enjoy it more
3. That he will continue to exercise and that his strength will increase
4. That I will get the rest I need - I am feeling very tired.

Monday, June 21, 2010

Happy summer everyone!!
John had a day of ups and downs. The morning was bad and he spent most of it on the couch waiting for the "attacks" to pass. He did manage to get to the doctor who does not think there is anything seriouly wrong with his shoulder. I have to find another pillow to put under his shoulder while he sleeps. He had some suggestions re changes in John's meds to see if they will work better. However, I think I had better check with the neurologist first as what he is suggesting will not work if my understanding is correct. John did not get any singing or exercising done today. The meds seem to be holding better tonight.
All in all a one thumbs down day today.
Prayer requests:
See yesterday

Sunday June 20, 2010

Ted and Tanya both called to wish John a Happy Father's Day so that cheered him up for the day. He did not feel well enough to try to go to church but Bishop Ron will come and give him communion on Wednesday. He did manage to sing three or four songs today and go to the exercise room and walk on the tredmill for a few minutes. He said the good thing was he could sing and the bad thing was that he sang so badly. However, by evening he began to crash again with the meds not holding well. Fortunately these did not last for such a long time that I had to give him any extra meds. That means that he did get all of his feeding sessions today along with several dishes of ice cream or sherbet. So on the calories side he did fine.
He has a very sore shoulder and is having trouble getting his sweaters on and off so I will phone the doctor tomorrow so we can see if that is anything that needs attention.
Not sure what kind of a thumb rating to give it for today.
Prayer Requests:
1. For healing for his shoulder
2. That his body would absorb the nmeds so that they are effective
3. That he will persevere with both the singing and the physical exercise

Saturday June 19, 2010

Saturday started out to be a good day. John was doing  very well until early afternoon. Suddenly the meds stopped working and he had a terrible time for the rest of the day. In spite of giving him extra meds three times, they did not click in until late in the evening. It was not only frustrating, but also disappointing as we had planned a couple of little outings for today. It was Community Days at the park right next to our apartment today with bands and dancers and community groups doing all sorts of things, hot dogs, etc. We had hoped John would be able to go over in his wheelchair and enjoy the displays. It was a beautiful day. The weather was perfect. But he could not go.
In the evening we had hoped we would be able to go to a concert put on by Merv and Merlahe me Watson, but that did not happen either.
We also cancelled out plane tickets for Ontario today as Tanya has broken her engagement so we will not be making that trip.
It was a one thumbs down day - although it feels more like a 2 thumbs down day.
Prayer Requests:
1. That the meds would be more consistant in working well
2. That John would feel more encouraged
3. That John would try to sing every day as his voice therapist has asked - he did not do it today because of feeling so lousy
4. That he would feel well enouogh to get to church this week.
5. For peace and healing for Tanya

Friday June 18,2010

Sincere thanks to all those of you who have been praying. A better day today. The meds seem to be holding and we finally got to the speech therapist in Surrey hospital today. She did an assessment and John will be going over weekly (health permitting) for about 10 weeks for therapy. She felt there was still good muscle tone in his mouth but that he is going to have to work on strengthening and using the voice muscles. His homework for this week is to sing - because he can make more sound singing than just trying to speak.  And he is to have two jokes ready to tell her - in a loud voice. He is going to like this therapist!
We will give it a one thumbs up today!
Prayer requests
1. That the meds will continue to kick in when they should
2. That the voice therapy will help with his voice and clarity of speech and that he will feel well enough to go each week. We don't go next week because our therapist is away that day.

Thursday, June 17, 2010

The last two days have not been good ones for John. The meds are no longer holding from one time until the next. After several days of doing so well, this has been very disappointing. Since nothing has changed in regards to his schedule, it is difficult to understand why this happens. I think we just have to accept the fact that he will have good days and bad days no matter how careful we are with his meds.
Thumbs down!
Prayer requests:
1. That the meds would hold better
2. That he would be able to make it to the speech therapist tomorrow (third try)
3. That we will not be disheartened by these set-backs
4. That his strength will improve in preparation for our flight to Ontario on the 2nd of July.

Tuesday, June 15, 2010

John did not have a good night - not just ice cream at 3am - but awake at 6am needing meds. This does not usually happen. The rest of the day went quite well. He was able to go to the massage therapist, get his glasses adjusted and look for a suit at Value Village for the wedding (did not find one). Then when we got home I thought he would be exhausted but as we got his coat off he said, "can we go to the exercise room?" So we went down and he walked for a few minutes on the tread mill. Not as long as yesterday, but the walk there and back is actually quite far so he got a good work out. I was amazed that he could do all that.
Then, tonight, the meds did not kick in and he had a bad evening. Everything had been given to him right on time so I do not know why the crash. So while there were some encouraging moments today, there were also discouraging ones too.
Let's make it one thumbs up and one down.
Prayer requests:
- that John will sleep through the night
- that the meds will continue to hold for the full one and a half hours before then next ones
- that his strength will continue to increase and he will be able to do more little things each day
- that we will find a suit for the wedding
- I have a very sore shoulder and thumb - (I think both are a result of the constant repetition of pushing the syringe for the feeding and meds) and that the Lord will heal them quickly

Monday, June 14, 2010

After a little trouble in the morning, John had a good day the rest of the day. With the meds working better he is starting to feel like trying to do some things. Today we walked down to the exercise room in our condo and he walked on a tread mill for a few minutes. The fact that he not only felt like doing something like that but also that he actually accomplished it, is very encouraging.
However, the other side-effects are still hard for him to handle, especially the copious quantities of bitter saliva he has to deal with.
But, this would have to qualify as a two thumbs up day.
Prayer requests:
- see yesterday.

Sunday, June 13, 2010

John had another good day in terms of the meds holding throughout the day. No rough spots although he did not feel up to trying to go to church - maybe next week. 
However, the result of giving him the meds closer together is that he is getting more of them - and they do have side-effects and so now he is having to deal with those. Most notably the bitter tasting saliva in his mouth has increased, and he is having what I can only describe as "hot flashes".
Although better than the complications of the meds not working, this still makes daily living difficult for him.
Would still give it a one thumbs up day.
Prayer requests:
- For the side-effects of the drugs to lessen
- The valve on the feeding tube has broken - that I will be able to get a new part and fix it tomorrow.
- That I will be able to find the time to get over to Gateway and help out in the office with some work that I am needed for - this is hard to do on a 45 min schedule!!

Saturday, June 12, 2010

John had a really good day today - the best in a long time. Not a single severe "crash" because the meds did not kick in. Tonight he and Margie and I went to the movies and saw "Marmaduke". Well the movie might not have been a highlight but getting him out really was.
Having said that, I also had to realize that it was much more difficult to accomplish this small outing than just a few months ago. Giving him his 8pm meds via tube in the middle of the movie was quite a feat - and he needed me on one side of him and Margie on the other to make it in and out of the theatre. It was quite exhausting for him. If we do it again we really need to take his walker or a wheel chair.
But it certainly was a two thumbs up day!
Prayer requests:
- that the meds will continue to work on this schedule
- that he will be able to enjoy more outings and that his strength will increase as the activity increases
- that he will sleep though the night (he was wanting ice cream at 3am last night)
- that he will feel well enough to go to church in the morning

Friday, June 11, 2010

Well... not the day I had hoped for.
The increase in the meds did not seem to help for much of the day. John did try to go to speech therapy this afternoon, but we were only on the road for 10 minutes (it's an hours drive away) when he said - 'pull over - please take me home, I can't do this, I am feeling awful". He continued to feel awful for most of the afternoon. Fortunately the therapist is very understanding - we'll try again next Friday.
When I see him so fragile, I begin to wonder at the wisdom of flying to Ontario July 2nd - but he is determined not to miss his daughter's wedding!!
This evening he seems to be doing better.
One thumbs down for today.
Prayer requests;
- for John's system to absorb and use the meds better
- for John to sleep through the night - last night was bad
- for encouragement for John through all the disappointments
- for us to finally get to the speech therapist next week

Thursday, June 10, 2010

Not a bad day today. I have shortened the time between meds and feeding to 45 min. and it seems to be working better. It means he is getting meds every hour and a half - since we started out at every three hours this is half the time it should be. It seems to be working but still not too close to the protein feedings. I hope so. I will try it for a few more days and see what happens. So far I have seen absolutely not signs of the dyskinesia or low blood pressue which are the complications of too much meds. I do think the more meds he gets the more saliva and mouth sensations he gets but we cannot do a lot about that at this time. Just keeping him "on" with the meds is my current goal.
The difficulty with this approach is having to be on a 45 min. schedule - I thought every hour was bad but this is much worse. Hard to remember each time but I am sure we will get used to it after awhile. If I can just remember to turn that timer on again every time it rings!!!!
We had to cancel the speech therapy last week as John was having such a bad day, so we will try and go to Surrey hospital tomorrow for that. Appointment is for 2pm.
I would have to say this was a one thumbs up day - PTL.
Prayer requests:
- for John to sleep through the whole night
- for the speech therapist to be able to help him in that area
- for the meds to work better
- for Bev to be able to stay on schedule and get the shopping and other things done as well.

Wednesday June 9,2010

The last few days have all been similar - each hour like riding on a roller coaster with it's ups and downs. John will feel OK for about an hour and then the meds give out and all the distress begins. He lays down and suffers through and in 15 minutes I can give him the next lot of meds and in 20 - 30 minutes after that he feels OK and gets up and watches TV or listens to music for the next hour and then we begin again.
I am trying to work the meds up a little closer together but because of the conflict with the protein in his feed I have to be careful or the meds will not work at all.
I am not sure what rating to give it - maybe no thumbs today

Sunday, June 6, 2010

John slept for the entire night - and had a much better day today. Only needed extra meds once.
Had a very quiet day which was good for both of us. Because he slept in - I slept too - in fact fell back to sleep (between hourly meds) and did not get up early enough to go to church. But I feel much better.
Our grandson, Quinton, turned 13 today so it was good to call him and his grandfather was quite surprised at his deep voice!!! He tells us he is one of only 20 students in Kitchener to be chosen for enriched classes next year. Congratulations Quinton!!
Thanks, once again, to everyone who is upholding us in your prayers. I cannot tell you how much we appreciate it.
One thumbs up today.

Saturday, June 5, 2010

Another day - somewhat like yesterday. John had a hard time in the morning and all afternoon. The meds were just not kicking in at all. I gave him extras several times - meaning he missed several feedings. However, by the evening things seemed to level out and he was able to sit up in his chair and watch TV.
There was a jazz festival in the park beside our condo today. I had hoped we might be able to go over and listen for awhile. John loves jazz. We could hear it from our balcony and it sounded wonderful. However, he said he did not feel well enough to go over and take part in the festivities. Too bad, it was a beautiful day out and I am sure it would have been great sitting in the park and enjoying the music.
Margie and Jean dropped in after they had been to the park to hear the music. They had hoped John might feel up to going to the movies, but he was not up to that either.
However, with the meds working better during the evening, I will give this only  a one thumbs down kind of day

.

Friday, June 4, 2010

John had a terrinle day today. He did not feel good at all. The meds were just not working well.
I cancelled his appointment for speech therapy because he did not feel well enough to go. It is an hour trip to Surrey hospital - which is where we have to go for this.
Once again I had to give him extra meds an hour after his scheduled ones, meaning that he went without several feedings that he should have had.
Talked to the neurologist's nurse today but she said that they could not think of anything else to do for John. There is a new med in Europe called Duodopa but it has not been approved for use in Canada yet - and it will have to go through trials etc. so it will not be approved any time soon. She was not encouraging.
The good news is that I did get the Roho cushion for John and it seems to be working better than the other ones we have tried. The bed sore does not seem to be it getting much better - but it is not getting worse either.
I have to give this a two thumbs down day

Thursday, June 3, 2010

The day started out fairly well. John felt good. However I was only at the coffee hour held here on Thrusdays for 15 minutes when he called me to come home and as the day went on, he got worse - in fact he missed two complete feedings because he had to have extra meds at the time he should have been eating. So he ended up taking only 4 cans of Jevity rather than the 6 he is supposed to have. Well at least it is still better than the one or two he was getting before the feeding tube went in.
May have found a Roho cushion (the $550.00 kind) second hand for under $200.00.  Will go and look at it tomorrow morning and see if it is what we need. He is very uncomfortable sitting for any length of time because of the bed sore on his tailbone. He also has a rash down one arm and I do not know what is causing that!!
Tomorow afternoon we have to go to Surrey hospital for a speech evaluation for him. They hope to be able to give him some speech therapy to help him speak above a whisper and with more clarity. It will be an exhausting day for him. But very worthwhile if there is a way to help him communicate easier.
All in all I guess it was a one thumbs down kind of day.

Wednesday, June 2, 2010

John had quite a good day today. Meds seemed to hold better. Felt good (well, good  for him) most of the day.
A few days ago he received a phone call from Myron Thompson, asking him for Tanya's hand in marriage. John gave his consent. So we have a wedding coming up - real soon - July 7th.
We are going to attempt to attend the wedding. We will fly from Abbotsford to Hamilton, thus avoiding large ariports. Our good friends, Harry and Lynne Inns will pick us up there and take us to their home in Brantford. We will stay with them, and they will take us to the wedding.
Lynne has a nursing background so will not be phased by our regime, I hope.
We will fly in July 2nd but have not set a time to come back yet- likely in about 10 days or so.
We are hoping some of our friends and relatives will be able to come and visit us in Brantford, as the only trip we will be making will be to the wedding in Scarborough.
Please do pray that John will be able to make the trip and attend the wedding and have a GOOD day, that day.
I think this day deserves a two thumbs up, don't you?

Tuesday, June 1, 2010

Another day similar to yesterday - maybe not quite as many OK times.
Still nothing from the neurologist.
So nothing much to report today.

Monday May 31, 2010

Not a bad day today. Bit of a roller coaster but John seemed  to have times that he felt OK as well as those when he felt lousy.
No returned phone call from the neurologist.
Had an important phone call today which he needed to give a "yes" or "no" to - but he could not make enough sound to do that so I had to say "he is shaking his head yes."

I have been trying to find a cushion for John's seat that would relieve the pressure on the area of his bed sore and prevent others from forming. Have tried out several but have not found one that really works well. Located one called a Roho cushion - I'm sure it would do the job -  but it costs $550.00!!
John was feeling badly at 10:30pm so I put him to bed. As I was writing this I heard a big crash - turned out he had decided he was feeling better and got up by himself but fell over. He did not hurt himself. He is supposed to call me if he wants up.  He wanted some ice cream which he is currently enjoying.
Well, I guess that last episode definitely made it a one thumbs down day.