Monday, August 30, 2010

John had a pretty good day for most of the day. He said he had had the best night's sleep that he has had in a long time. So he felt relatively good this morning. He was able to enjoy a visit from Gordon Moulden and family this afternoon. Gordon taught the English course at Gateway for several years but now lives in Japan most of the time. It was great to visit with them.
However, tonight John did not do as well. By bedtime he was not doing well at all - the meds not working much and the secretions in his mouth greatly increased. He just called me in to pray for him because he was not settling down at all.
Please pray he will continue to have a good night's sleep and that the meds will work all the time, not just sometimes.

One thumbs up for the day and one thumbs down for the eveing!!

Sunday, August 29, 2010

Another bad day for John - morning in particular although the meds have been not doing their job all day. I felt I could not leave him even to go to church this morning. He was feeling a little better in the afternoon so that Margie and I were able to get out for a half hour walk. The weather was lovely and it was nice to get the fresh air.
I have not idea why the meds are suddely not working well again but we just have to take each day as it comes and make the best of it.
we are expecting visitors tomorrow afternoon so please pray that John will be well enough to be able to enjoy the visit.

One thumbs down today.

Saturday, August 28, 2010

John had a rough day today all told. He had a REALLY bad morning - with the meds not seeming to kick in at all. However, by the afternoon he was able to get up and get dressed as we had visitor's coming. Former students, who have been in India for the last 4 years, came by to see us. We had a very good visit and John was able to sit and talk with them.
After they left he rested for awhile and then felt that he could make it to the park to see a Midsummer's Night Dream. However, although we got there, he was in such poor condition, we turned around and came home again immediately. He has had a really dreadful evening the rest of the time.
I have just tucked him in to bed and pray that tomorrow will be better.
I have to give today a one thumbs down in spite of the good afternoon because the rest of the time has been awful.

Friday, August 27, 2010

John has had a good day to day - for him. Felt better in the morning and able to go for speech therapy. He did not have as much trouble talking and did quite well with his voice exercises - and telling his joke for the day. Best he has done yet. He also enjoyed a yogurt from Tim Horton's (while Margie and I enjoyed a French Vanilla Cappachino!!)
I went up to London Drugs to get the meds for next month. They had made a mess of them - again. I had to make two trips today and still have to go back tomorrow to get the rest that they forgot to put into the blister packs.
Tomorrow is the first of a two day Interantional Festival here. We are hoping to be able to go to the park to see A Midsummer's Night Dream performed in the open air.
Please pray John will have another good day and we will be able to go.
I think I can give this a two thumbs up day!

Thursday, August 26, 2010

Today did not start out too well. John had a rough morning. Trudy and Margie were scheduled to come and visit in the afternoon but we were not sure if he would be up to it. However, as often happens, after his 2pm meds he started to pick up. So they were able to come and had a lovely afternoon visiting both of us.
John is complaining that the bones in his back are rubbing together. Not sure what to do about that.
Tomorrow we try to go to speech therapy again. Because it is now scheduled earlier in the day, if John has a bad morning, he does not feel well enough to make the hour trip to Surrey.
Please pray he will have a good morning and be able to get there. This could be his last one.

The morning was one thumbs down but the afternoon is a one thumbs up.

Wednesday, August 25, 2010

John had quite a good day today. By that I mean, he had no major crashes. Went to see our GP and he agreed that John should come off of all the new meds until the neurologist returns. Since one of those was supposed to dry up all the extra secretions in his mouth, but did not, we asked if there was anything else that he could take instead. He said there were two other meds but when he phoned the pharmacy they said that both meds could not be taken with his Parkinson's meds at all. So there was nothing to be done about that. John had a hard time accepting that.
I got some muscle relaxants for the sore muscles in my right shoulder and arm.
Another one thumbs up day !
Please pray for the meds to continue to work as well as they have the last few days.
Pray that John will make it to the speech therapy on Friday as he has missed two weeks
Pray that my shoulder and arm will get better (it's been sore for 3 months)

Tuesday, August 24, 2010

We have discontinued using the new meds and John seems much better. Since we would have to wait for several more weeks to talk to the neurologist, I have made an appointment for tomorrow for John to see our local GP to get his input and hopefully help us with what to do next.
There is a noticable improvement in the last two days.
Today Gus came again and sat with John while I did some shopping. Then I went to the massage therapist - she managed to "unlock" my thumb which has not been able to bend for the last three months (too many thumbs down???) She also worked on my right shoulder which is quite sore. Hopefully this will have loosened it up quite a bit.
A one thumbs up day - hurrah!

Friday, August 20, 2010

John woke up feeling fairly good this morning. He was much stronger and walked quite steadily out to the living room. But then I gave him his feeding and first of the new neds. 45 minutes later when I gave him his Parkinsons meds they did not work at all. He was feeling really badly so when the time came to leave for his voice threapy I had to call and cancel it.
We have decided to stop taking all the new drugs until either John feels better or the neurologist gets back from his vacation. We will see how that goes.
Most of the meds did not seem to hold until the next meds all day although he did not get

 so bad I had to give him extra meds. So he did get all of his feedings and needed calories today which was a plus.
Would have to make this a two thumbs down day.
Prayer reuests as before.

Thursday, August 19, 2010

The weather was cooler today and I had hoped that might help John feel a little better. I am not sure it made any difference. The most noticable thing I have found in the last few days is that he cannot walk, even with his walker, without me there to make sure he does not fall.
The blessing we had today was that one of the other tenants in our building came and offered to stay with John so that I could go out and do some shopping etc. He is a very nice man from Poland and he talks a blue streak so John does not have to say a word!! He has offered to come back next Tuesday and give me some time then as well.
The valve - or whatever you might call it - on the end of John's feeding tube was beginning to break. I could not get another one at the medical supply store. They suggested that I try the dietician at the hospital. She gave me a new one - but it is not like what we had before and it is HUGE and bulky and not practical at all. The pharmacist is trying to find us another kind.
Please pray that John's strength will return
Pray that the meds will work better.
Pray that we will get the proper valve for the tube

Maybe one thumbs down for today -

Tuesday, August 17,2010

Things have not gone well since the new meds were added to John's regime. I do not know if they are causing the regular meds to not last as long, but I do know they are not doing what they are supposed to do. The one to dry up the secretions has not helped at all and John feels they are worse. The one to help with how he feels in the morning seems to be making him shaky and unable to stay still.
two thums down I'm afraid.

Please pray for his body to absorb and use the meds properly and for wisdom to know if we should discontinue the new meds.

Thanks

Sunday, August 15, 2010

John was still sleeping when I went to church for 11 am today. However, he was awake by the time I got home. He had another day of the meds not holding until the next dose so it was not a good day. On top of that, the new med that is supposed to be drying up some of the secretions in his mouth seems to be making it worse, not better. However, I picked up the other new drug today and he will start on it tomorrow. I am hoping that then we may see a difference. I will continue with the new meds for a few days. If they are making things worse then the nurse clinician told me to discontinue them and get back to her in three weeks when she gets home from vacation. I hope we do not have to go that route but fear we will.
Margie and I went picking blackberies this afternoon on a walking trail a half a block away from our condo. So I have lots of blackberries to put on John's ice cream when he wants it (I smash them up and mix them with some of the ice cream and he seems to be able to eat fruit that way)
Thanks for the concern and prayers - please keep them up they are what keep us going.
Blessings

Another two thumbs down kind of day.

Saturday, August 14, 2010

Well, nothing has changed. I still have one more med for the drug store to order but the new ones I have given him have made no noticable difference. Yesterday I had to cancel the speech therapy because he felt too unwell to go. Today he had a bad day - not once did the meds hold until the next dose. So he was having bad spells all day.Twice I had to give him extra meds meaning he has missed two feeding times as well. Tomorrow I will pick up the new med - substituted for the one that would not dissolve so I could give it via the feeding tube. The one that is supposed to help dry up the secretions in his mouth has made no difference so far. It has been a discouraging day. The neurologist's office is now closed for holidays for three weeks.

Please pray for the new meds to start to work better.

I think I feel like it is a two thumbs down day.

Thursday, August 12, 2010

Well - the day finally arrived and Bishop Ron arrived and took us to the Parkinson's specialist at UBC. He dropped us off and went and did some other business while we had the appointments and then picked us up when we were done. A big savings in parking alone!
 Although John was tired from such an early start, he slept part of the way there, and did very well for the whole appointment.
I had been warned that the Parkinson's clinic had made some big changes - including being in a different place and having a different routine.
We were taken to a room where a young lady doctor from England was waiting for us. She is doing a neurological internship at UBC but in surgery. However the doctor she is training with is away on vacation so she had been assigned to the clinic. Not a really encouraging start to the day, I thought.
However, she listened very carefully to our whole report - took lots of notes - and then said she would go and talk to "the head man". About a half hour later he arrived and sat down and told us what changes he would make in the meds. Basically adding something to help dry up all the saliva and something to help John sleep better. He was concerned about the amount of Sinemet (the basic Parkinsons drug) he is now on but felt we could not cut back on it. He had no other solutions or suggestions. We next see him March 10, 2011,
We were home by noon and so in the afternoon I went off to get the new prescriptions. One had to be ordered. Two I came home with after checking that they would be OK to dissolve for the feeding tube. But when I went to use them the one was in a capsule and when I emptied it into water it held little granules not powder and they would not dissolve. So he really has not been able to start on the new meds yet.
I called the nurse clinician (had also talked to her at the clinic today) but had to leave a message asking if there was another form of the drug we could use. She told us she goes on holiday tomorrow until Sept. so if she does not call back tomorrow we will be out of luck for several weeks.
John has had no ill effects from the outing today and did fairly well for the day.

Please pray we can get the new meds sorted out quickly and that they will work effectively.

Tomorrow we go to Surrey to the speech therapist again. Margie usually goes with us but she is still away on vacation so I will be going by myself with John. It is difficult to manage him, walkers, pillows, medicine bags, parking, etc. on my own so please pray it will go well.

A one thumbs up kind of day.

Wednesday, August 11, 2010

John had a fairly quiet days yesterday and today. He feels weak and sick in the mornings but can talk fairly well - and feels better in the afternoons and evenings but the mouth problems build up and he cannot talk. he is never sure which is worse!!
Tomorrow we go to the specialist. Because of the early appointment time, I will have to give him an extra dose of meds at 6:30 am and then get him up and ready to leave for 7:30am. I am not sure how he will be able to do that, but hopefully if we can just get him to the car, he can rest or sleep all the way in to Vancouver.
Not sure what kind of a rating I can give for today.

Monday, August 9, 2010

John and I had a  long talk today - and I realize that sometimes I do not see a day the way he sees one. I tend to judge it on what he is able to do or not do. But I really do not always understand how he is feeling. He told me today that he feels he is a little bit worse each day - and that the problems within his mouth ( excess saliva, uncontrolled sucking etc) have been intensifing over the last few days and nights. I suspect that is because the drugs have been increased, but it is making him very uncomfortable. I got the sense today that he is getting very tired of the struggle.
Pleases pray for the Lord to comfort him and relieve the side effects that are causing so much havock in his mouth. Continue to pray for our appointment with the neurologist on Thursday - first that he would really LISTEN to what John has to say, and secondly that he would have some kind of solution for him.

Better give it a one thumbs down

Sunday, August 8,2010

John had a much better day today. He slept well last night and had no major problems with the meds today. He even felt well enough to come to the grocery store with me in the afternoon and to drive their shopping cart around the store! The pressure sores seem to be healing and the toothache has not bothered him at all today. Thanks for the prayers.

One thumbs up for sure, for today.

Saturday, August 7, 2010

Today started out fairly well for John - but fell apart in the evening. I had to give him extra meds all evening meaning than he did not get his final two feedings. He definitely has not gained any weight since he went on to the tube feeding and my aim is to at least get the 6 feedings in each day so he will not lose any more. At about 300 calories each, 4 is just not enough.
Prayer requests remain the same.

Friday, August 6, 2010

Today was a mixture of not too bad and not too good. John was able to go for his speech therapy and even walked all the way into the hospital and to the therapy wing with just his walker. In previous weeks I have had to push him in his walker or wheel chair. However, his voice was not good or strong while we were there and she had to stop the more strenuous exercises because he could not do them. The sucking or freezing of his mouth was also quite bad so it took him a long time to get anything out. All in all it felt like a wasted trip. I am trusting it really wasn't. Tonight he was not as good as the meds seemed to quit just at the time he should have the next ones (but it takes 20 -30 min. for them to kick in). So he did not have a comfortable evening at times. At least he had lots of football to watch!!
He also has developed a toothache. Of course the dentists were all closed by the time we got home from the speech therapist in Surrey! Pain killers seem to be keeping it under control at this point.
The pressure sores do not seem to be as bothersome as they were although they still look red and sore and there are two places that they have broken open.
Please continue to pray for his body to absorb the meds properly - for me to be able to get him a dentist's appointment early next week - for the pressure sores to heal - for the neurologist to have some answers and help for us on the 12th.
Thanks.

Not sure what kind of a rating to give for today.

Thursday, August 5, 2010

I am happy to report that John had a much better day today. He did not have a good night and had to have meds at 3:30am - but by the morning he said he felt better than he had in several weeks. And the whole day the meds have worked as they should. The pressure sores do not seem to be bothering him as much as they have the last few days. That may also have to do with the fact he just is not feeling so unwell.
Tomorrow we go to the speech therapist again. He has been doing his homework every day for that.
Our priest, Bishop Ron Ferris, is going to drive us to the neurologist next week. So that is also looked after.
So today I have lots of thanksgivings and ask for you to continue to pray for us.

One thumbs up for sure.

Wednesday, August 4, 2010

John was a little better for the first part of the day. In the afternoon he had a bad spell but then seemed to pull out of it OK. We had planned to go to the movie theatre tonight to see the opera Aida. John insisted he felt well enough so off we went (Margie went with us). Bad idea.
Not only could he not sit comfortably with the bed sores (he now has two of them) but the second dose of meds did not work and he had a really bad attack all during the 3rd and 4th acts. He would not leave early - partly, I think, because he loses his sense of balance in the dark. Anyway, he toughed it out until the end but I am sure none of us enjoyed the last half of it. I don't think we'll try that again! Better to wait until it comes on TV!!
So another two thumbs (or more) down day.
Prayer requests remain the same.

Monday, August 3, 2010

John had a bad day again today - perhaps even worse than yesterday. Not only are the meds not holding, but the bed sore is making sitting so painful that he cannot get comfortable and he keeps needing to be moved to another position but nothing seems to really help.
Please pray for the sore to heal and for the meds to work better.
And please pray for the appointment with the neurologist on the 12th - for wisdom and understanding for the doctors (he is going to have some other students or somebody with him) and for John - the appointment is at 9am at UBC meaning we will have to leave here at 7:30am and be up even earlier. John does not do mornings well (that's an understatement). This is going to be a real trial for him. But if I change the appointment we would have to wait months to get another one. Also pray for someone to help me in getting him there.

two thumbs down again!!!

Sunday, August 2, 2010

This has been the worst day that John has had in awhile. The meds never fully kicked at all. He felt lousy the whole day - just sometimes worse than other times. On top of that, he has developed another bed sore at the base of his spine (in spite of our expensive roho cushion!) and so sitting has become very difficult for him. He spent a good deal of the day on the couch either lying down or sitting in a reclining position, but his back got very sore and eventually he moved back to sitting in his chair in spite of the discomfort.
He said he feels like he feels sickest in the morning but each day he feels worse than the last one.
Please pray the neurologist will have some solutions for him when we see him on the 12th.

two thumbs down.

Sunday, August 1, 2010

Ups and downs - and downs. That about describes our life. Yesterday, John felt well enough to go out with me with his walker, and walk around the patio, fountain, gardens etc. in the condo. Today he has felt poorly all day. Other than that, not much to report.
Please continue to pray for him to feel better, for the meds to work as they should, and for him to be able to sleep at night.
Thanks
Another thumbs down today.