Thursday, September 30, 2010

Another month over.
Today started out poorly. John said he was not feeling well at all. There never seems to be any reason why one day is better than another - it just is. Since I had had to get up to him several times in the night, I was also tired and still feeling the effects of a cold.
However, John seemed to pick up as the day went on. I went out for the first time in several days to do some shopping and he was well enough for me to be away for the full 90 minutes.
Margie dropped in for supper and we ate it out on the balcony enjoying the lovely fall weather. John joined us and he was able to sit and visit with us until Margie left at 8pm.
Please do pray that he will sleep better at nights.
The sleeping pills he takes produce what the doctor calls "vivid dreams" In effect they are so real that John is sometimes confused as to whether what he dreamed was real or not. That was the cause of some of his unrest last night.
Also please pray I will get rid of this cold very soon. I need full energy to deal with each day.
Not sure what kind of a day to call this.

Wednesday, September 29, 2010

Yesterday and today have been a little better for John. The meds worked as they should. However, my cold is still bad so I have been staying away from him as much as possible. I am feeling a little better tonight and hope I feel a lot better by tomorrow.
Please pray for healing for both of us.
Let's make it one thumbs up today.

Monday September 27, 2010

John had a rough day today. The meds were simply not holding until the next dose. Several time I had to skip the feeding (which can conflict with the meds) and also give him extra meds in place of the feeding.
He said that this evening he had been the worse he had ever been. At least that is how he felt. I have just put him to bed and I am praying he will go to sleep quickly.
I have also had a hard day as I have come down with a head cold with sniffles, dry cough, sore throat and sore glands and ears. I am taking quantities of vitamin C!! But it means I am trying to stay as far away from John as possible, except for time of giving him his meds or feeding him. That's difficult when he is having a bad day. I need to get some of those masks to wear, I guess. I am much more concerned about him catching it than me having it as I know I will feel better in a day or two. But he does not have the same resources to fight bugs.
So two (or maybe three) thumbs down today.

Sunday, September 26, 2010

Praise the Lord John finally slept for most of last night. Since he hardly slept at all the night before, and I only got 3 hours, this was a blessed relief.
The last few days have not been too bad, but the nights have been difficult. Friday night he had to have extra meds twice during the night - something that does not usually happen.
Friday was our last visit to the speech therapist. One of the little jokes that John had going with Nahal was that we all wore the same colour each week.
This is the last picture of us - Margie (who usually went with me to help with John, parking, driving etc), me, Nahal and John.
Nahal is Canadian born but her parents are from Iran and she is a non-practicing Zoroastrian.
She became very fond of John and has promised to come and visit us on her own time.

Prayer requests:

That John will sleep through the night!!

That he will continue to work on his voice exercises daily

One thumbs up today.

Thursday, September 23, 2010

If John were writing this blog he would tell you that this is his 72 and a half birthday today. He always said  his birthday should be celebrated every half year at least - but preferably monthly on the 23rd. So happy half birthday John!
He had a fairly good day today. But tonight he suddenly crashed. Since he hardly slept at all last night perhaps he is just overtired. Anyway he headed for bed earlier than usual and I will just give him his 11pm meds while he (hopefully) sleeps. That is one benefit of tube feeding. He seldom wakes when I give him the 8am meds.
I have been thinking for the last few days how thankful I am to have very good health and thus am able to look after John.
I never heard back from the nurse on John's meds - surprise!
Anyway, not much else to report.

Please keep praying for him to sleep through the night. It is important for both of us.

One thumbs up for the day and one thumbs down for the night.

Wednesday, September 22, 2010

We had a very quiet day today. Although the last few days have not been too good, today went fairly well. John had one time that he was asking me for more meds right after I had given him his feeding ( so giving meds will not work as the protein nullifies the effectiveness of the meds) - however, he did not go into a bad attack as I feared he would and made it through to the next time for meds OK.
He is sleeping less at nights again - the sleeping pills seem to put him to sleep but only for an hour or two and then he wakes up and does not go back to sleep for hours. At home he sleeps on his side which makes the coughing and spitting up easier.
Yesterday he went to the massage therapist and did OK - although lying down on either his stomach or his back presents problems with the choking and coughing up the phlegm.
Friday is the last day for the speech therapist. We will miss the visits with her - but not the long drive there and back. The sessions have definitely helped his voice and we will have to be vigilant in keeping up with the daily exercises.

Please continue to pray for the meds to work and for the side effects to be limited.
Please pray that he will sleep through the night

A one thumbs up day.

Monday, Septmber 20, 2010
The  last few days have not been good for John - the meds are not working well - he has had a great deal of congestion and spends a good deal of his time coughing up phlegm.
I talked to the neurologist's nurse today but she had no suggestions that would help John in any way. She said she would leave the doctor a note. My experience in the past has been that means I will not hear from her again unless I call and then she will have nothing to report. Apparently the doctor only gets back to her when he has something new to suggest - which isn't often.
John's nights seem to be especially bad again- bedtime is the worst as it takes time for the meds and sleeping pills to take effect and in the meantime he lays there with the muscles contracting and relaxing and the saliva flowing out of his mouth onto a towel that is on his pillow. He says it is getting worse.
He finally goes to sleep (usually) but only for an hour or two and then he wakes up for several more hours. However, at that point he feels good - even his mouth is not as bad - so he wants to be up at that point. hat That means I have to get up too and while he gets back to sleep about 3 or 4 am - I sometimes have woken up by then and find it very hard to go back to sleep. So it makes for some very short nights for me. So now he is trying to entertain himself in bed and not get up but that does not work well for him at all.
Please pray for the meds to begin to work well again and for the neurologist to find something to help with the problems in the mouth. Pray that he will sleep through the entire night and that I will somehow be able to get the sleep that I need to stay healthy.

One thumbs down.

Saturday, September 18,2010

Tonight's blog was written by John.

Then the people said to Jesus, “What must we do to be doing the work of God?” Jesus answered them, “This is the work of God, that you believe in Him whom He has sent.” John 6:28 & 29 RSV.


I have thought for a long time that I should write giving you prayer requests and thanking you for your prayers. Parkinson’s causes my hand to have tremors and therefore I cannot write and typing takes a long time because I hit the wrong keys. I am very grateful to Margie Knapp for typing this for me.

I am finding that dying is not a happy experience. In fact I am very impressed with those who are disabled before death. For example stroke victims especially double stroke victims who every day when they wake up have nothing to look forward to. My life can be difficult and I never feel good but I have friends and things to do that give me purpose in life.

Jesus has become more real to me and I am certainly grateful for His presence. I have been learning a lot from knowledge network and PBS stations especially in Nature. I wonder about atheists how they can believe that there is no God when the world is so beautiful. Surely if everything was purely coincidental there would be great areas of our world that would not be beautiful.

I would especially like to thank Beverly who has been a wonderful wife throughout our marriage and especially now. When I married Beverly, I thought she was a special person but I had no idea how good she was. As my condition has deteriorated, her love and care has increased. These last few months, I have been hardly able to talk. My lips just don’t open. Therefore communication has been very difficult between us. At times, it has been our greatest challenge. Sometimes she doesn’t understand what I am saying. I think that has been the biggest challenge especially since I thought one of the best things we had going for us was that we communicated well. In spite of the problems, she has continued to love me and to forgive me, which to me, is remarkable. Her life has changed substantially since my condition has become worse. There are days in which I think we only say ten words to each other and yet she continues to love me.

When I first got Parkinson’s, I wondered whether Beverly would continue to love me. To my great surprise, I have found out that she does, and it increases daily. In fact, I have found out, to my surprise that many people love me and I myself have nothing to give them. I now understand more completely, that God loves me unconditionally and many people seem to love me too. I am so grateful.

I am able to do very little in our home. I am very weak and have very poor balance and can fall down easily. Therefore Bev does not let me do very much. Sometimes I am unable to swallow and thus she has to feed me by tube. At 8 a.m. and 9:30 she gives me my medicine, then at 10:15 she gives me a liquid meal and again at 11:00 a.m. she gives me my medicine. She goes on giving me the medicine and meals every 45 minutes until 11 p.m. Thus, the longest time she can be away from me (if she skips one of the feedings) is 90 minutes. She never complains.

Friday, September 17, 2010

John has been having a pretty good day today. He was up earlier than usual and showered himself. He was still feeling good when we left for his speech therapy session in Surrey. He felt he had one of his best sessions with the therapist and is looking forward to his last appointment next week.
Nahal, the therapist, had been teasing him about how handsome he would look if he let his hair grown long, so last week he wore a blonde wig to the session. Below is a picture of John with his therapist, Nahal.

How's that for a handsome guy???
I think I will never suggest he grows his hair long!!!

A definite two thumbs up kind of day.

Wednesday Sept 15, 2010

Gee, September is already half gone. That was fast.
Last night John stood up to walk into the bedroom and fell and hit the back of his head on a piece of furniture. He was OK and but it shook him up quite a bit. I don't know if that contributed to his condition today or not, but he did not have a good day at all. Although he did not have any really bad crashes (meds not working at all) he did not feel well all day and his mouth bothered him considerably.
Please pray for the meds to work effectively and for the side effects in his mouth to disappear.

I have to give today one thumbs done.

Tuesday, Sept 14, 2010

John had another good day today. The meds seemed to work quite well. His voice is quite strong at times and he is very faithful to do his voice exercises.
He is preparing a note to put on this blog. So look for that in a few days.
Not much else to report.

Please pray for this improvement to continue.

Two thumbs up.

Monday, Sept 13,2010

The last two days have been pretty good as far as the meds working well. John had a really good day today - until tonight. I forgot to set the timer and he missed his 9:30 meds by a half hour. The result was that he suffered greatly for the rest of the evening - said it was the worst he has felt in some time. Makes me feel terrible when those kinds of things happen. And it takes quite awhile for his body to correct itself after such a mistake.
One thumbs up for the day and one thumbs down for me!!

Saturday Sept 11, 2010

I can never write Sept 11th without remembering the terrorist attacks on the USA on that date. I guess we all do.
Anyway, this Sept 11 was a good one for John. He hardly slept at all last night but it seems as if he does not sleep he has a good day. Makes no sense at all but seems to be that way. Anyway today went well.
Paul Christon, a friend who used to live at Gateway with us, and Debbie Blase, our friend from Tsawwassen, were both over to visit today and have supper with us. Debbie, who comes every few weeks to see us, noticed the difference in John's ability to make himself heard when he talks. John's sister Ruth called from Ottawa today too and he was able to talk to her as well.
John also joined us for supper (although he had ice cream only). But it was his third dish today!
I have lost the key for the lock on our storage locker but Paul was able to get the lock off for me so now I can get into our storage unit again. Hurrah!
So all in all I think we could call this a two thumbs up kind of day.

Friday, Sept 10. 2010

Well, this was not a good day for John. That was disappointing as it meant that his appointment with the speech therapist was affected. In fact, the first half of the hour he was suffering greatly from the meds not kicking in and was feeling quite awful. This meant he could not do the exercises etc. that he should have been doing. The therapist is very good and so worked through some other instructions and helps for  us but it was quite discourging to go all that way (one hour drive each way) and then not be able to take advantage of most of the session. There are only two more appointments left. (The government only allows so many visits).
Things did not get a whole lot better once we got home and so he has had a miserable evening as well.
Two thumbs down for today!!

Thursday, Sept 9, 2010

I had an e-mail from a friend today that made me realize that when I say John has had a good day I do not mean that he has had a day without problems and is feeling really healthy. I only mean it in terms that it was not as bad a day as he sometimes has. He has said several times that he never really has a "good day".
But having said that, relative to his condition, he had a fairly good day today. He was able to come out with me this afternoon. He sat and ate a frozen fresh fruit yogurt while I shopped at the farm market. Then he came into London Drugs with me and I pushed him around in a wheel chair that they have there in order to do our shopping. It worked quite well. He also used his walker to get to the car in the garage (whereas I usually pull the car out to the front of the building so he does not have so far to go to get into it.)
Tonight Gilmara came to visit John while Margie and I went to Curves. Gilmara was one of our students at Gateway from Brazil. She has recently returned to be on staff at Gateway and this was the first time we have seen her since her arrival back in Canada. It is wonderful to still have contact with these former students and to see the love the still have for John (and for me too)
Tomorrow we go to the speech therapist in Surrey.
Please pray he will feel well when we go. His voice is getting stronger and that is very encouraging. Also for safety in travel as it is an hour each way and most of it through heavy traffic. We are blessed to have Margie to drive us there and look after the parking etc. while I get John into the hospital.

A one thumbs up day for sure.

Wednesday, Sept 8, 2010

Well, today went pretty well in spite of the fact that I somehow got the meds and feeds timing mixed up. Bishop Ron came and gave us communion and it was amazing how much voice John now has to talk to him. Although the volume was there, because he also finds it hard to form words, it can still be hard to understand what he is trying to say - but at least you can hear him. The voice therapy is definitely helping.
Please continue to pray for his voice to strengthen and for more good days.
He slept through the entine night last night which was a real blessing.
A one thumbs up day

Tuesday Sept 7, 2010

Very quiet day today. John did not sleep most of last night but he seemed to do fairly well today. He wanted his eyes checked because they were bothering him. The good news is that the prescription of his glasses is fine. The bad news is that the only thing that can be done to help the discomfort in his eyes is to use some eye drops to help with the dryness.
Today was our grandson, Samuel's  (Sammy) sixth birthday (Tanya's little one). He also started school today. What a birthday present!!! Well, he was thrilled.
Tomorrow Bishop Ron plans to come and give us communion.
One definite improvement is with John's voice. Although he still cannot talk when he is off (meds not working right)  when he is on (meds have clicked in) he has a much stronger voice and can actually call me from another room rather than ringing his bell.
We go to speech therapy on Friday. Last time our very young therapist was telling John he should grow his hair long - so I bought a blonde wig at value village and he will wear it this week to surprise her.
Please continue to pray for John to be able to do the things he is able to do and be wise enough not to try to do those he should not. This week when we went to Wal-Mart he drove their electric cart as he has done for the last few years - but he says he can't handle it anymore so he won't use it again.

One thumbs up for today

.

Monday, Sept 6,2010

Yesterday was a good day for John. New students at Gateway, Kim and Paul Huthinson from England, came over to visit in the afternoon and John had a lot of voice and was able to talk with them quite well.
Today has been another story. His meds have not held well at all. However, I did not have to give him any extra - in fact, it has been over a week since I have had to do that - meaning that he has been getting all of his feedings every day and hopefully that will help to give him more strength. His mouth was really bothering him tonight, which meant he did not want to go to bed. So it is a very late night for us tonight.
Have to make this a one thumbs down day.

Saturday, September 4, 2010

John had a fairly good day today. He did not feel well enough to go with Margie and I to the park this afternoon. There was a Gospel outreach going on there by a black church from Fort Langley. It was very good and I was sorry John could not hear it. Some of the songs I did not know but Margie said they were very popular ones from West Africa (Margie worked in the Gambia for 24 years). The beat was great.
Margie took us out for supper to celebrate our anniversary and John did feel well enough to do that. He had a chocolate souffle dessert - while Margie and I enjoyed a steak! However it took John longer to get through his supper than ours -including our salad and 3 cups of coffee (decaf). That's because his mouth was bothering him and he could not get it open to take a bite of the dessert. But eventually he made it!!
This is our anniversary picture

Better give that a two thumbs up.

Friday, Sept 3,2010

Another good day today - not as good as Wednesday, but good. John was able to get out and get his hair cut this afternoon. Afterwards we went to Wal-Mart and he drove their handicapped cart around the store for a few minutes. However, he tired quickly and soon wanted to go back to the car where he would be more comfortable. We decided to call it a day and come home. I got the most important things which were gift cards for two grandsons with birthdays this month.
This morning I managed to get out and do most of the rest of the shopping that we needed - hit two drug stores, a garden maket and a grocery store and was back home all within the hour and a half between meds. Well done, I think.
Margie and I would like to take John out to dinner for our anniversary tomorrow night - he can only order ice cream or something but it would make the day special anyway.
Please pray he will be well enough to enjoy tomorrow - maybe a trip to the park and dinner? Are we asking too much?? We'll see.

A one thumbs up day.

Friday Sept 2, 2010

John did not have as good a day today - the meds did not hold out several times giving him a hard time. The secretions in his mouth were also very bothersome. Gus (one of our neighbours in the condo) came again today and stayed with John while I went shopping. I appreciated it very much as John was not well enough for me to leave him on his own today. Only got London Drugs done in the time I had before the next meds but that was the most important stop. Hopefully, I will be able to get to another couple of stores tomorrow as we need food - protein drink for John and fruits and veggies for me.

One thumbs down for today.

Wednesday, Sept 01, 2010

Yesterday was a mixed bag - from my point of view it went fairly well as the meds seemed to click in when they should and John got all his feedings. From John's point of view, his mouth seemed to really be producing a lot of saliva and phlegm and he found it quite distracting.
Today was much better. John has had the best day he has had in a long time. When my Mom passed away we kept her power wheel chair and John used to use it to go out to the back fields at Gateway for BBQ's etc. However he has not used it since we moved here. Today he took it out and we went for a nice outing in the nearby park. We enjoyed it very much. The weather was wonderful. When we got back he decided that I should ride on his knee into the garage. Of course one of our neighbours came out right at that point and gave us a very astonished look!
John's voice has been much stronger today too - usually he rings a bell to call me whenever he needs anything and today he has been able to just call for me.
All and all a very good day. Definitely two thumbs up.
The thing I find I now have to guard against is hoping that this means there is an improvement. Instead, I have to remind myself that there are good days and bad days and just be thankful for the good ones.
Saturday is our 45th Wedding Anniversary. Would you please pray that he will have a good day that day. Although we can't celebrate with the usual things like dinner our etc. it would be great if we could make another trip to the park!
Thanks