Thursday, March 31, 2011

Another month gone - wow! And Spring is definitely here - the flowering trees are all in bloom and my bulbs in my balcony planters are also blooming. Beautiful day today - weather wise.
For John is was a really bad day.
Bishop Silas Ng came from Richmond to visit John this morning. It was so good to see him and have a visit and prayer with him. However, John was not feeling too well and could not communicate very much at all. But I know he appreciated the visit.
At 2pm he began to get muscle cramps, in his feet, legs and back. They just got worse and were soon joined by all the other symptoms - sweating, difficulty in breathing etc. The only improvement over the last bad attack he had was that he was not coughing up so much phlegm as the pneumonia is pretty much gone.
This time it went on for hours and the Percocet and Flexerol (muscle relaxant) did not make any difference. By 5pm he was in terrible shape and the nurse called a doctor in. He prescribed morphine. It seemed to help and settle things down. So at 7pm when Margie called and said did i want to go out for coffee, I said sure. She picked me up at the hospital and we went to a local coffee shop and I had some supper. But when I returned to the hospital before 8pm  John was much worse again. In fact - really, bad. Another dose of morphine did not help at all. Finally a little before 9pm I told the nurse to give him his sleeping meds and knock him out because I did not know how much more he could take.
Almost instantly, when she gave the meds, all the symptoms stopped, even though he did not fall asleep for another half hour. This is something I need to discuss with the doctor tomorrow.
Anyway, any hope of him coming home tomorrow is gone. In fact, I do not want him home like that. He needs to stay where he is until they solve this mystery.
Please pray for the doctor to have wisdom. I am very concerned that they are focussing on the pain (which obviously has to be dealt with)  but not the cause. As I said to Margie, it's like giving you something for pain, but not setting your broken leg

Anyway - two thumbs down for today.

.

Wednesday March 30, 2011

John had a pretty good day today. He had several minor attacks of cramping but they did not last long. If he has another day as good as that tomorrow the doctor MAY let him come home of Friday. The doctor says he has to have two days where they do not have to do anything for him in the hospital that I cannot do at home. But because John does have an occassional good day regardless of what we do I will not count on it too much until we get tomorrow over with.
Please pray he will continue to respond to the various meds as he should.

Anyway - a one thumbs up for today. Yeah.

Tuesday March 29, 2011

When I got to the hospital today the nurse told me that John had had a restless night. He seemed OK in the morning and into the afternoon. Mostly he just watched TV. However, about 5:00pm he began to get severe muscle cramps in his legs and feet. The doctor had not seen John on his morning rounds and arrived at his bedside a half hour later. This was the first time he has actually witnessed one of John's episodes and he was quite disturned by the amount of rigidity, cramping and sweating.
He immediately ordered a muscle relaxant for him and told me not to count on John coming home on Thursday as we had discussed earlier. He wants him to have two days of no "attacks" before he comes home.
Debbie dropped in and had a visit with us today which was very nice. Margie called and asked me to go out with her to supper but I did not feel John was doing well enough at that time for me to leave him.
The lady across the way who has Parkinsons and dementia is being moved to another ward tomorrow. She was supposed to go today but apparently whoever was in the bed she was supposed to move in to, was refusing to leave. Interesting place.
I left the hosital early tonight - just after 8pm - as I was so tired. I hope John was good until they brought his sleeping meds to him.
Now I am off to bed.

One thumbs down

Monday March 28, 2011

I went to bed at 8:15pm last night and slept through until 7am this morning. Boy, that felt good.
I was up to the hospital early so that I would see the doctor when he made his rounds. He tells me that the pneumonia is now clearing nicely. He is pleased with the difference the Percocet has made for John. He wants to continue to treat him in hospital for the next few days, but if there re no major set-backs, he will release John to come home on Thursday.
I have mixed feelings about that. It will be wonderful (and much easier on me) to have him home. Howeverr, he is still having episodes - he had one at 5pm tonight and he was not due for the Percocet for another hour but the nurse gave it to him early and then he settled down again. I am just anxious as to whether the problem is really solved or not. However, there are two more days to see how things go.
John watched TV for most of the day and was quite comfortable up until the 5pm session.
Not quite sure how to rate today

Sunday, March 27, 2011

John had a good night and seemed fine when I got to the hospital this morning. Margie picked me up at the hospital at 9:30am and I went with her to church at St Simon's in North Vancouver. This was the church that John served in as an honourary assistant for many years - but it is too far away for me to attend any more with the time restraints I have. It was wonderful to see so many old friends, and since it was their Renewal weekend, the guest speaker, The Rev David Mcfarlane gave a really great sermon.
John had a good day the rest of the day as well. He had one slight episode of sweating but other than that has been quite stable. We rented a TV for him today and he was happily watching that when I left tonight. Having the TV plus no bad episodes, meant that I came home much earlier tonight. PTL Now it's early to bed for me.

So a definite one thumbs up for today.

Saturday, March 26, 2011

Well, the sleeping meds must have worked because I did not get called back to the hospital last night.
When I got to the hospital today John was sleeping. He woke up at about 11am and said he felt pretty good. Although our doctor was supposed to be on call this weekend and said he would see us today, we never saw him so I did not get a chance to get his opinion on what happened last night.
In the afternoon Margie dropped around to the hospital and took me out for lunch at Tim Hortons. But when I got back John was beginning to show signs of rigidity. He told me that he was going home with me tonight. At first I thought he was joking because the lady in the bed across from him with dementia is always wanting to go hom - then I realized he was serious!! I had to tell him he has to stay there until they have a better handle on all of this. For the rest of the afternoon and all evening the symptoms seemed to come and go - never getting really bad but never being far away.
They switched the kind of antibiotics he is being given via intravenous - I thought that the pneumonia was doing well, but apparently the doctor was not happy with the progress so is trying a different kind. I am told he is to get it for 7 days - I don't know if that means he is definitely going to be there for the next week or not.
I ordered a TV for him today to help him fill the time (and to save my voice a little bit)
I have read one detective novel to him and we are over half way through Michael J Foxes book, Always Looking Up. My voice is getting rough!!!
The nurse gave John his sleeping meds at 9pm tonight so I could come home by 9:30pm. They are very helpful. 8:30am - 9:30 pm - feels like a long day.

One thumbs down

Friday, March 25. 2011

Yesterday the doctor put John on Percocet. This morning, because it seemed to stop the symptoms he was having, the doctor increased the dosage to 2 tablets every 5 hours and John had quite a good day. I was so relieved to think that we had found a solution. I asked the doctor why this was helping and he said it was blocking the signals to the atatomic nervous system that was triggering all these symptoms.
He seemed quite good so I took the opportunity to take the evening off and go out to dinner with our church group. We had a great steak dinner at a nearby restaurant.
I just got home and there was a message on the phone to call the hospital.
The nurse told me that John was in bad shape, that they had given him more Percocet and all his sleeping meds but so far he was quite agitated and even even aggresive when they tried to tube feed him. They have had the doctor on call in to see him but he has only ordered Ativan for him if he does not settle down.
If this continues they will call me to come back up to the hospital .tonight
Usually the bedtime meds knock him out and I hope that is what will happen tonight.
Fortunately, our doctor is on call this weekend so he will be in to see John tomorrow morning and we can see what to do next.
I am so disappointed as I thought we had found an easy solution!!

I thought I would be giving a one thumbs up but now it is a one thumbs down.

Thursday, March 24, 2011

This was the worst day yet.
I thought that John would be looked after for the morning so I took the time to get some things done around the apartment, and go to the Thursday morning coffee hour. I did not get to the hospital until noon.
Apparently John had had a difficult time in the morning trying to communicate with both the nurses and the doctor. Because they are such busy people, they do not have the time to try and listen to what he is whispering or to wait until he can get a word out. So he was frustrated. However, worse than that was the fact that he had begun another "attack" at about 11:00am and was already rigid and sweating by the time I got there. When I arrived John greeted me by saying, "take me home, I don't was to die here." I assured him he was not going to die there - although later on I began to wonder if I had spoken too soon.
The next few hours were a nightmare between the rigidity, difficulty in breathing and sweating. By 3pm the nurses called our doctor and asked for something to relieve his pain. The doctor ordered Percocet. They gave him a dose at 2;30 but it made not difference at all. They gave him another one at 3:30pm and shortly thereafter he began to feel better. We got his clothing and the bed all changed from being soaked with his sweat and he said he felt much better. That lasted for about one hour.
During that time Bishop Ron Ferris dropped in to see John and prayed with him. Gus had come earlier but John was not well enough to visit with him at all. He also could not talk to his brother Jim or his sister Ruth who both phoned today. However, I was able to talk to them and update them on John's condition.
At about 5pm John said he could feel another attack coming on. The nurse said he was only supposed to have the Percocet every 6 hours. Nevertheless, because he was getting worse again, she finally relented and gave him another dose at 6:30pm. This helped a little although he never felt good again. 
I read a good part of a mystery novel to him to keep his mind occupied. When they brought the 9:30 meds I asked them to give him his sleeping pills too and he was soon sound asleep. Then I could come home.
It has been an exhausting day.
I'm not sure what all this means. I hope to go to the hospital very early tomorrow so I will see the doctor when he makes his rounds and see what he has to say.

a FOUR thumbs down day today.

Wednesday, March 23, 2011

I took the opportunity to sleep in this morning. Then I went to the store and bought 2 dozen small cupcakes. I made a three tier cake out of them and took it to John in the hospital. When I got there I discovered he had finally been moved out of emergency and is now in room 209 South at Langley Memorial Hospital.
He had a pretty good morning and afternoon. They had failed to give him all of the protein feed they were supposed to last night but I just gave him more today to make up for it. He is even reading a book and he has not read anything for a long time.
Margie and Gilmara arrived at about 4pm with Tim Horton's coffees and a birthday card from everyone at Gateway. They had only been there a few minutes when John began to sweat. So they left shortly thereafter as they could see he was getting worse.
Now in one way, I was glad he was exhibiting these symptoms so they can be reported and hopefully dealt with. But he got so bad that I wished he had not had to go through that at all.
This time it was the rigidity that was so bad. I sat and massaged his legs, feet and toes for hours - literally - and they were like they were made of stone and the cramping was very painful. He was also experiencing nausea (something new) and a whole lot of phlegm coming up. They have him on a suction machine there as well and it is big and the container was almost full. He only soaked one hospital gown with sweat although he needed another one by the time I left.
At about 8pm his breathing suddenly became very laboured and he was really in agony. The nurses could do little to help him but I made sure they were documenting it all for the doctor. After about an hour John said he was worn out, losing strength and needed something done.
I asked the nurse to either call a doctor or give him his sleeping pills two hours early. She opted for the latter. In about 10 minutes he was sound asleep and finally peaceful.
So he certainly did not have a very good birthday although he enjoyed all the many greetings from friends via cards, e-mails and facebook. I copied them all out and took them over to him. Thanks to everyone who sent him birthday wishes and get well wishes.
We also received a lovely bouquet of flowers from my dear Aunt Dot today. They could not have come at a better time to cheer us up. They do not allow flowers in the hospital rooms any more but I will take a picture and show it to John and enjoy the flowers here at home.
The kids and grandkids, including John in China, all called on my cell phone and talked to John and wished him a happy birthday.
Anyone that wants to call him on my cell and say hi (you have to do all the talking) is welcome to do so - 604-825-4819 between the hours of 12pm and 8pm (BCtime) Those are times I know I will be there (except from Friday night - I hope to go out for dinner that night)
In the bed across from John is a lady from our condo. She also has Parkinsons. But her symptoms are very different from John. She is physically in better shape - but has some dementia - and certainly still has a strong voice!!! She was yelling and calling for her husband and wanting to go home - right now. As sick as John is, we are so thankful he is still mentally alert and "with it".
Please do pray that the doctors will have wisdom and finally find a solution for these terrible episodes.

Two (or maybe three) thumbs down for today.

Tuesday March 22, 2011

John spent the night in emergency. Our family dotor came to see him this morning and admitted him to hospital for an indefinite stay. John has pneumonia which is what was causing the fever. But the antibiotics got that under control quite quickly. However, the doctor is keeping him in to try and get the meds balanced out and working better. Hallelujah. He is going to consult the neurologist and work with him to try and get the puzzle solved.
John felt he had a bad day today. He is still in emergency as there is not bed available up on the ward. So his bed is very uncomfortable. And the nurses are very busy with each new patient who arrives and do not have time to look after the ones hanging around for a long time. I ended up doing all of John's meds and feeding because the nurses were just too busy. Hopefully he will be moved up tomorrow.
Tomorrow is John' 73rd birthday. He thinks this is an awful way to spend a birthday - he says it will be a birthday NOT to remember.
I made sure I was at the hospital by 8am in order to see that he got his first meds for the day. Good job I did because the doctor had only ordered the meds in the blister pack and not any of his Parkinson's meds that are in big bottles because he takes so much of them.
They managed to get hold of the doctor and get verbal permission to give him the sinemet and then we got all the meds sorted out once our own doctor arrived. They were quite astounded at John's regime.
However, they are able to feed him 4 of his 6 cans of protein drink during the night so I only have to feed him twice during the day. This is very good as the protein conflicts with the meds and prevents them from working well.
John did not feel very well all day, but he did not have any episodes of sweating, rigidity etc. Although I am happy about that, I can't help but wonder why???
Please pray the doctors will be able to solve the problem and get the meds working better.
I am sleeping in tomorrow morning (I hope)

One thumbs down

Monday, March 21, 2011

John is now in the hospital - well, in emergency anyway.
He had a really bad and prolonged "attack" yesterday afternoon and evening and I finally talked him into letting me call the ambulance. They were really great when they got here - 4 firemen and 2 paramedics -
they took him to the Langley emergency and he was seen by a doctor there. Of course, by the time we got that all done the 8pm meds had finally kicked in and he was looking much better. But the paramedics had made a report on his condition when they got here so they knew he had been much worse - turned out he was also running quite a high temp. That went down as he got better - could be he always has that high temp with these episodes, I have never checked him for that.
Anyway the doctor said that they would keep him in overnight and let the family doctor decide in the morning what to do with him.
John was not a happy camper. It is his birthday tomorrow and I know he does not want to be in hospital then. But I want them to sort out this issue of meds. So we will see..... more news on that to come
I came home at 10:30pm with the expectation of a long nights uninterupted sleep. At midnight the phone rang and it was the emergecy - my husband had asked them to call me to see if it was OK to have his sleeping meds now!!!! Oh well, hope they worked and he has had a good night.
In the afternoon I had attended Margie's Uncle Jack's funeral in Port Coquitlam. It was a really uplifting service - a celebration of a life well lived.
Two thmbs down for sure

Sunday, March 20, 2011

John had a good night until 5am. From then on he did not do as well. For the first time I can remember, he was needing his meds (meaning he was already having difficulty breathing, sweating etc.) at 8am He was awake and very uncomfortable by the time the worker arrived at 9am. The day did not get any better.
When I got home from Church the worker had been trying to change his t-shirt and wipe off the sweat but he was so rigid that she was having great difficulty with him. If I had not arrived back when I did, I think he could have ended up on the floor.
I have had to change his clothes three more times today and I am trying to keep the pillows, chair etc covered in towels so I can easily change them as well.
The worker tonight was so concerned that she is calling in a report to the health care nurse.
I have called Sharon, the nurse clinician, and left a message for her to call me tomorrow.
I have also left a message for the OT as she has ordered John's chair to be raised up so that the new lift we have to get will fit under it. Dave, the maintenance man from Gateway, came and made the platform yesterday. What a blessing he has been to us.

Two thumbs down today

Wednesday March 16, 2011

Another difficult day. John slept better last night but was really feeling rough this morning. For the first time, his pj's were soaked which meant he was sweating at night as well.
Got him moved to the sofa where he slept until the next worker came at 11am.
He was good enough by then to get up and get the rest of his morning prep done. By early afteroon he was bad again. I increased the meds but it did not seem to make much difference. I skipped several feedings, hoping that would help, but that did not do anything either. But now I have to stay up and give him the feedings I skipped earlier - so late bedtime for me tonight.
The OT came in today to assess John's rigidity etc. I think that we are going to have to get a different kind of lift for John - one he sits on and swings him into his chair and bed, rather than the one he is using right now where he has to stand. But in order to use the other kind I have to get a platform built for his chair.
Margie called today and Uncle Jack's funeral will be next Monday. I will try and get respite for then so that I can attend the funeral.
Please do pray for her as she tries to deal with all the many details, as well as the grief.

one thumbs down for today.

Tuesday March 15, 2011

John had a bad night last night and a bad day today. After yesterday I had hoped we were getting a handle on the meds - but apparently not.
Today was my respite day but by 12:00 when the support worker came, I had just managed to get John up and into his chair. No sooner had I left, than he began to have a really bad attack.
By the time I got back, 4 hours later, the worker was quite upset. John had been rigid and sliding out of his chair and she had tried to get his repositioned but found it too hard. She says she will not attempt that again. She had also changed his t shirt because it was so wet from the sweat. She was very concerned.  I wouldn't be surprised if we have a different worker next week.
The only positive today was that John began to feel better about 8:00pm

 One of my main tasks for today was to return a commode to the Red Cross as we could only have it on loan for 3 months which was up today. I have since bought a second hand one. The Langley Red Cross is way up at the north end of the city. It is quite a distance from where we live. I headed there first, only to discover they are only open in the morning (I did know that but had forgotten). So I will have to make another trip tomorrow to return it. Otherwise I got all my other errands done.
The company returned John's suction machine today and it seems to be working fine.
Margie came over to help me put some stuff in storage She went home about 8:30pm and was just in the door when she received a call saying that her Uncle Jack had been hit and killed by a car. He was in his late 80's - a bachelor, and she is his nearest next of kin. He often came over to be with her for any special events, and has been with us for the last two Christmas'  He lived in Port Coquitlam. We were all very fond of him. He was a wonderful Christian man and will be greatly missed by his many friends in his church and community. I am hoping I can get respite to enable me to go to the funeral once we know when it is.
Two thumbs down for today.

Monday March 14, 2011

John had a really bad night last night - he was awake a lot of the night with phlegm and hiccups. It meant that he felt really bad in the morning. He slept on the couch for the morning and then asked to be put back to bed at noon. Later in the afternoon he got up and felt much better. The rest of the day has gone quite well and he had no bad times with the meds not working.
We seem to be winning a little bit. However, because he slept so much today, even with the sleeping meds, he is telling me he is not sleepy tonight.
I talked to Sharon, the Parkinson's nurse, and our neurologist is away working at VGH for the next 3 weeks. However, she says to keep on with what we are doing and let her know how it goes. I may try feeding him some of his protein drink in the middle of the night to make less feedings when he is taking the meds and see if that helps.
Last night in the middle of the night John told me the suction machine was not working. When I checked it out this morning, sure enough, it was not sucking at all. I checked everything I could and then called the company we got it from. They came and picked it up and will return it tomorrow. However it is $30.00 for the pick up and delivery (the company is in Burnaby). They called to say they could not find anything wrong with it and are returning it to me in the morning. They will put on a new filter and wand as they should be replaced every 6 months (we have had it 3 months) and that will be another $25.00. Ouch.
There was enough improvement for  today that I will give it another one thumbs up.

Sunday March 13, 2011

John had a difficult time getting to sleep last night, but once he was asleep he slept well until morning. He was wide awake and alert by 8:30am and had two servings of ice cream before the worker arrived at 9am.
He was good throughout the morning and afternoon.
It seems as if his problems begin about 3:30 - 4:00pm every day so I decided to try and get ahead of it by giving him an extra sinemet with his 2:00pm meds. and each set of meds thereafter. Whether that was the reason, or it was just a good day, he did very well until 7:00pm. Then he began to have an attack altough it never got as severe as it has been the last few days. So that was somewhat encouraginig.
He had very little liquid in his suction machine today although his mouth was obviously bothering him as he ran the machine all afternoon and by this evening he was back to stuffing kleenex into his mouth!!
Enjoyed church today although I wish I could stay longer for the coffee hour afterwards. I managed a few minutes today and had a mouthful of coffee.

Although it was far from perfect it was an improvement today so one thumbs up

Friday, March 11, 2011

John did not  go to sleep last night until I gave him more sleeping meds at 3:30am. However he slept well after that.Neverthless he was wide awake when the worker came at 9am (he is usually still sleeping).
He had a much better day today.
I read the prescription information that London Drugs gives you with any new med. The one for the new Sinemet under side effects says, "Seek immediate medical attention if any of these rare but very serious side effects occur: fast/shallow breathing, unusual muscle stiffness, unusual sweatig" Sound familiar??? so does that mean he should take less of the med? The nurse told me to give him more. Hmmmmm
Will talk to her again on Monday.
The one time John began to feel bad today, I loaded him into the wheel chair and took him with me to take the garbage out. It seems as if he gets moving the symptoms lessen. Anyway it did seem to stop them and although he was a little rigid and had to be sat back up in his chair once, it was nothing like the last few days.
So very thankful for today
My one concern today is that the disc in my back is very tender and I have to be very careful how I move or turn or it reminds me real fast. It's very hard to do everything I need to do for John if my back is not good. Please pray that the disc swelling will go back down quickly.
Was sad to hear about the earthquake in Japan today. Checked on all our former students and staff who are living there, or have family there, and thankful to say they are all OK. One girl is without gas or electricity and transportation is down - it took her brother 7 hours to walk home from wherever he was. But they are all fine.

One thumbs up for today. Hallelujah

Thursday, March 10 2011

John slept well on his new mattress - although the last few days he has been waking up earlier than usual - but not because he was uncomfortable. Maybe he is just getting a better sleep.
I sent an e-mail to Sharon, the nurse clinician, outlining exactly what had been happening the last few days and asked her to call me, which she did.
Apparently the doctor is in Montreal at a conference so she could not talk to him. She suggested that when he gets bad to give him one more Sinemet pill. I tried it this afternoon and it did seem to help although John has had a rough day. She thought it was a good idea to stagger the feeding as I did yesterday so I will continue with that. It has it's benefits but one of the negatives is that I have to start earlier and the last one is 11:45pm so I have to stay up a little longer. However, John can just sleep through it.
The doctor gets back to the office on Monday so we have to wait until then to get his input.
My frustration level with this whole process is getting very high. It is just so hard to watch John suffer so much and feel like there is nothing I can do and we are always waiting for the doctor to be around to make some changes in a few days. But nothing ever really changes.
Tonight it was my night for respite. Margie and another friend, Pat from Bowen Island, came and picked me up and took me out for a steak dinner. We had a lovely time and deliious dinner.
John wasn't too bad while I was gone but got bad just before bedtime and asked to be put to bed early. However, he has yet to settle down ...ooops.... there goes his bell again.
One thumbs down for today (except for dinner!!!)

Wednesday, March 9, 2011

The struggle goes on.
John slept very well on his new mattress last night and said he wasn't sore this morning - until he started to move. That is a big improvement.
He seemed to be doing not as badly throughout the day as some days, especially noticable is the lack of saliva and phlegm - only a little not even covering the bottom of the suction machine cup as compared to 400 cc in the past. He still used the suction machine a lot but there was just not as much fluids.
I decided to try and give the feedings only after every other meds to see if there is a conflict there and it would show up that way. I had to start his feed earlier and end later than usual but it actually proved to be farily easy to do. I thought it might be helping until..... 6pm the "attack" began and it was a really, really bad one. From that time on, until he went to bed, he was gasping for breath, sweating profusely - like his t-shirt was wet - not damp; and his hands were shaking uncontrollably. He didn't want me to leave him because he was so afraid he would not get his breath, but it is so hard to just sit there and watch him suffer.
Once I got his sleeping meds into him, he suddenly pronounced that he was feeling better.
Now I have no idea at all what is going on or how to help it.
I will call the neurologist's office tomorrow and give them the latest data and see what they think.
The new hospital bed arrived today. Very similar to the rented one we did have, but much quieter when you put it up and down.
Two thumbs down because of this evening.

Tuesday, March 8, 2011

Well, they say a change is as good as a rest and so today was a change, rather than a rest.
John had a one o'clock appointment with the eye specialist. She particularily checks on his eye health in regards to his diabetes.
But having the appointment to keep meant that I had to cancel the worker coming for my respite so no time to get shopping and things done.
Since I could not use Handydart for transportation, and the office is only 8 blocks away from where we live, I decided to push John in his wheelchair over to the appointment. Although there was a misty rain it was a nice walk and John enjoyed seeing lots of things he never gets to see.
The appointment went well, and his eyes are fine except that the cornea is drying out because he does not blink often enough (a condition of Parkinsons) so I now have to put eye drops in his eyes 4 times a day.
When the appointment was over it was time for his meds but when I went to give them to him, I found that I had forgotten to put the syringe in the meds bag. So I had no way to get the meds into the tube!!
I decided that the only thing I could do was wheel him home as fast as possible. However, on the way home I remembered that the Fraser Home Health office was nearby and that the nurses there might have a syringe.
So we went over there, and since he is registered with the home nursing service because they come in weekly to change the dressing on his tube feeding, they were happy to give me a syringe and I got the meds into him.
With that accomplished, we went to the Langley eye care centre which is in the same mall, and got his glasses straightened and repaired. On our way home from there, we dropped in at Value Village and John happily sat and looked through the DVD's - finding several he wanted to buy.
We were out for over 3 hours and all of that time he was fine
When we got home, he did well for awile but about 6pm he started to have diffiulty and within an hour he was back to all the old symptoms again.
So - I don't know if the new meds are working better or not.
It is very confusing at the moment.
My latest theory is that maybe the protein feeding is too close to the meds - because it does conflict with them. My reasons for thinking that is that while we were out today, although I gave him meds, I skipped the feeding because it is too hard to do. The same when we went to see the neurologist and he was fine then too.
But if so, it doesn't explain why that does not happen all the time - and why only in the later part of the day. 
The other good news is that John's new mattress arrived today - finally.
So I am hoping he will have a better sleep tonight, and maybe, he will not be calling me in the night to move the cushion under his feet!!!
 I am going to give today a 2 thumbs up for the morning and afternoon - but two thumbs down for the evening.

Monday March 7, 2011

Well, today was not much better than yesterday - except the sweating etc. started much earlier.
I talked to the nurse as the neurologist had told me to do, and she said it was too soon to tell if the meds were working because the old ones have to work their way out of his system - call her back on Wed. So two more days of suffering!
I called the company we are getting the bed and mattress from but only got the salemen's answering machine. left a message but he has not called back. John now has gauze patches taped on both hip bones to try and protect them as he sleeps as they are on the verge of developing pressure sores.
Tomorrow John goes for his yearly visit to the eye specialist. I had planned on using Handydart to take him there but when I called you apparently have to download an application on the internet, take it to the doctor to get it signed, and mail it in. So I will have to use other means tomorrow. If it was like today, I could have just pushed him over in his wheel chair because it is only a few blocks away - but I hear tomorrow is going to be rainy and nasty. I understand there are taxi's that take wheelchairs so we will use one of those.
I suddenly realized today that I would have to cancel the care worker for tomorrow and then I further realized that that means I lose my respite day. However, it takes a year to get this appointment so I am definitely not going to change it!!
Two thumbs down for today.

Sunday March 6, 2011

John slept well for most of the night but woke me at 5am because his feet were sore and then went back to sleep - but I could not sleep any more so it has been a long day.
John was really good this morning and early afternoon. He was fine while I was at church and good enough that in the early afternoon I was able to slip out for a one hour meeting for a church committee I am on and he was fine.
 I was beginning to hope the new meds were going to work today. Then at 3:30 he said he felt an "attack" coming on. From then on it was downhill - especially with the difficulty getting his breath, rigidity, and sweating. I had to change his t shirt several times because it was soaking wet from the sweat. I had to use the lift to sit him back up in his chair several times. The only improvement was there was not a lot of the congestion and he only ran the suction machine once in awhile. That was good because Margie came over and we all watched Les Miserables - the 25th Anniversay performance. And the suction machine is very loud so it was not interfering with the music!!
I will call the neurologist tomorrow and see what his nurse says.
I will call and see if the bed and mattess will soon be here.
And I will call the OT and see about getting the loan of a reclining wheel chair to see if it makes a difference.
So looks like I will have a busy day!!!
I will give it a one thumbs up for the first half of the day and one thumbs down for the second half.

Saturday, March 5, 2011

John had a good night last night but a terrible day today.
I do not think the new meds are holding at all. He is so rigid that he slides out of his chair continually - and getting him back in is difficult at best. I need a block on the bottom of the foot rest so his feed cannot slide off but if we put one on then the chair would not be able to be raised for him to get out so that would not work. We may have to consider getting a reclining wheel chair for him to sit in. But first I guess we will have to deal with the meds.
I spoke to the doctor today at the conference (our neurologist was the chief speaker) and told him about yesterday and he said to watch him over the weeked and call sharon (the nurse clinitian) on Monday if he was not any better. He does not seem to really realize what John goes through each day and how hard it is for him.
I enjoyed the conference. The doctor had lots of information on new areas of research that is being done into diagonsing and watching the progress of the disease. But nothing that will be even available for 5 - 10 more years. Nothing applicable for now.
The afternoon was a physiotherapist who talked about exercise and gave all sorts of exercises that can be done sitting down. I came how with a whole list of good ones for John - but he was way too sick to even talk to him about them today.
I am beginning to get very angry at the whole medical system - surely there is some way to supervise and get meds to work without having the patient  go through all this agony!!! And surely there is some way to get a hospital bed and mattress when you need one without having to wait for weeks and weeks!!! (still no word on when they will be delivered) but he is developing a pressure sore on one hip so we need it urgently.And yes, I hve called to check on them.

TWO big thumbs down for today.

Friday, March 4, 2011

John slept most of the night last night but was awake very early this morning and could not get comfortable. I have explained to him that I can no longer move him out to the sofa by myself because it is now a two man (or lady) job. So I just kept rolling him o)ver and he toughed it out until the help arrived at 9am. (He needs the special mattress but I understand,because it is a new product,  the company had to order it so it is not here yet
I got in touch with a nurse clinician at the Parkinson's clinic and she said to go ahead with the generic form of the Sinemet that the doctor had ordered so I went up to London Drugs and got the new pills today.
It is too early to know if they are making any difference.
John had a difficult evening, especially with the rigidity. I had to put him on the lift and reposition him into a sitting position in his chair at least 6 times. Once, by the time I got all the harness etc off him and pillows around him, he had already slipped down again and we had to start over. Don't know if that is the new meds not working well or just a bad day.
The good news today was that the extended medical finally got caught up on all the claims I have made for meds etc. so I am solvent once more. And I now have a person in the office to send further claims to, and I can e-mail her when I send them in and she will let me know when they arrive and personally see they are processed. So, after all that hassle, some good has come out of it.
Questions I have been asked:
Is our extended medical covering all the expense of the bed and mattress?/  Yes - 100%
Is John in pain when he is so stiff and rigid? Not really, When the muscles cramp - yes. But otherwise only when I try to bend his leg and it won't bend etc. then it hurts and I have to work on it and exercise it until it will bend a little bit. It's called breaking the rigidity.
What difference will the new meds make? Not really sure but the thinking is this. The Sinemet that John takes is actually a compound of two things, levodopa and carbidopa. The levodopa is what replaces the dopamine that John's body does not produce and controls the Parkinsons. The carbidopa controls the nausea which the levodopa causes. He was getting the usual dosage of 100 units of  carbodopa to 25 of carbidopa. The doctor thinks that because he is on such high doses of Sinemet because he needs that much levodopa, he may be getting too much carbidopa and that is causing some of the symptoms. So he has prescribed another Sinemet which has 100 units of the levodopa to only 10 of the carbidopa.
So now we wait and see if it indeed makes any difference, 
Tomorrow I am off to a seminar on Parkinson's for most of the day and the respite worker who comes on Tuesday afternoons will come and stay with John for that time.

One thumbs down for today.

Thursday March 3

Today was the big day. We had a male worker, Fred, who came in at 9am and helped me to get John all dressed and into the car ready to go to Vancouver, He did very well and was quite comfortable all the way in, during and back again. This was wonderful - but also frustrating because the neurologist only saw him at his best, not at his worse.
Our appointment was for 12:15pm. We got in to see the doctor at 1pm and left at 2pm. He wants to change the kind of Sinemet that John is on to reduce some of the other things that are in it as well as the levedopa that he needs. However, when I called London Drugs to see if they had any they said they could not get it - only a generic brand and the neurologist had told me before to never use the generic Sinemet. I called hsi office but only got an answering machine so I just left a message. Anyway, he is speaking at a Parkinson's conference here on Saturday and I am going to that so I can talk to him then - I hope.
No word on the bed or mattress being delivered yet. I will have to check on that as well tomorrow.
We have a commode from the Red Cross but we have to return it by the 15th of the month. So yesterday I went on the computer and found a second hand one for sale here in Langley and I was able to pick it up tonight. So one more obstacle hurtled.
John had a fairly miserable evening. This was my first evening respite so I was out but the worker said he was not doing well. He was certainally in pretty bad shape at bedtime.
Margie and I went to a Bible study at the home of one of the members of my church. There were about 15 people there and it was quite enjoyable. I hope to get to know people better this way.
Met a lady tonight who used to work at Lynden Lodge - that was the name of Gateway before WEC took it over so we invited her to come and see all the changes at Gateway.

One thumbs up for the morning and trip to Vancvouver, but one thumbs down for tonight.

Wednesday, March 2, 2011

John did not sleep well again last night. He felt OK in the morning and early afternoon. Then he had a really serious "attack" as he calls it. He was so rigid he was practically lying out straight in his chair, and I had a really difficult time getting him into the lift and repositioned into a sitting position because he was so stiff.
The sweat was just rolling off of him and I had to change all his clothes and wash him off because he was so wet.
Later on he improved again and had a reasonable evening. At bedtime he was having a lot of phlegm and coughing to contend with but none of the other symptoms.
We see the neurologist at UBC in Vancouver tomorrow. Please join me in praying he will have some answers.
I have remarked before how some of the workers have been sharing their difficulties with me at times and I am finding a ministry to them, often in listening, sometimes in sharing an insight. Discussing faith is often very easy because they see John's picture in his dog collar and realize he was a minister.
Today our noon worker told us that she had a really bad headache - so when she was washing John's face, he reached up and whispered a very short prayer for God to heal her. She looked a little startled and just laughed. About 5 minutes later, she stopped what she was doing and said in a very surprised voice, "my headache is gone, I don't believe it, it really is gone." I know John felt good that God can still use him even in the situation he is in. And I know some seeds were planted today.....

But overall still have to give today a one thumbs down.

Tuesday, March 1, 2011

Wow, another month gone in 2011.
John is having difficulty sleeping many mights now. Last night he was almost asleep by the time we got him ready for bed. But an hour and a half later, he was wide awake and wanting to watch TV.
He is also complaining that the bedclothes (VERY light) are too heavy on his feet. So I left them off his feet last night, with bedsocks on, but today his feet were really cold. I need to see if I can get a "tent" to put over his feet. Today the suction machine has run all day and he is stiff as a board. So it has not been a good day for him at all.
It was my respite day so Margie and I went to Abbotsford. I had hoped to get a commode chair at the Mennonite Central Committee store - they have always had some when I was there before. Today they did not have any. We only have the one we use now on loan until the 15th of the month and then we have to get our own. I will go on to Craig's List and Kijiji and see if I can get one there. They are much more expensive than I had imagined.
The really good news is that the extended medical has Okayed the purchase of a hospital bed and special mattress for John. I am hoping we may have those for him before the ending of the week.
Also had a phone call today from son John, in China. He is thinking of starting his own Enlgish school in DongGuong. He also may be the host and head judge for a TV show for entrepreneurs - no decision yet whether it will be in English or Chinese. He says he can do either. So things seem to be going well for him.

But, as far as the day goes, health-wise, one thumbs down.