Friday, July 30, 2010

John did not have a  good day today at all. The meds were not holding well. I had to go up to London Drugs to pick up his meds for the next month - but I no sooner got there than he called to say please come home because his meds were not working. He was feeling very poorly by the time I got back to give him extra meds.
A one thumbs down day for sure.

Thursday, July 29, 2010

John slept through the whole of last night - and until noon today. He said it was the best sleep he has had in months and that he felt "almost human". However as the day progressed it was not as good, but not as bad as the last few days. He did very well with his speech practice today and he seemed able to talk a little better throughout the day.
He also ate several dishes of ice cream - something he has avoided the last few days because the sour tasting saliva made the ice cream taste terrible. So it would seem the taste is a little different today.
Please continue to pray for another good night's sleep. We do not have any speech therapy this week as our therapist has gone on vacation.
One thumbs up today.

Wednesday, July 28, 2010

John slept a total of one hour all of last night. None today. He also needed exta meds twice during the night (which he usually does not need even if he is awake.) Today was really bad. He felt lousy all day. Had to give extra meds twice. We had friends from Kelowna, Clarence and Lucille Knapp in for dinner along with their son and daughter in law ( Dave and Delight who are new staff at Gateway) - and although John managed to sit at the table with us he was unable to eat anything (not even ice cream) or take part in the conversation.
The involuntary sucking action in his mouth is getting worse and cutting off his communication even more.
Please pray the mouth will settle down and he will be able to sleep tonight.
A big two thumbs down for today.

Tuesday, July 27,2010

Not a good day today. John has not slept well for the last two nights. His mouth and the congestion caused with the thick saliva have kept him awake. He went to massage therapy today but the therapist had to treat him face up because when he lay face down the saliva just poured out of his mouth. The heat is also bothering him and although our apartment is relatively cool, the afternoon sun makes the corner he sits in quite warm and he ends up sweating a great deal. I usually have to change his undershirt once or twice in the day. There were no tender spots on his side when the therapist worked on him so that was good news.
Please pray for better sleep at night for him.
One thumbs down for today.

Sunday, July 25, 2010

The last few days have settled into a pattern where John has a rough time in the mornings and the evenings but the afternoons are not as bad. I will be phoning our local doctor tomorrow to talk about whether to change the meds again or not. We see the neurologist in Vancouver on the 12th of August. We get to see him once every 8 months. Please pray one of these doctors will be able to come up with something to help John. The need to suck with his mouth is increasing as the meds increase and when this happens he is unable to get any speech out - the last few days have been very frustrating for him as he tries to talk. Yesterday he had one thing he badly wanted to tell me and it took 20 minutes for him to finally be able to get it out. Fortunately I got it on the first try - often I have to ask him to repeat what he has said and then we start all over.
Please pray for the side-effects from the drugs to lessen and for the doctors to have wisdom in how to help John to enjoy a better quality of life
I feel like the last few days are all one thumbs down!!

Friday, July 22, 2010

The day started out and ended poorly for John, but in between there were some better times as well.
Like many mornings lately, he did not feel well at all and spent the time in bed or on the couch. However, he had to get up and dressed in order to leave for his speech therapy in the early afternoon. He rode on the walker at this end and wheelchair at the hospital but he made it to the appointment and did well there. His voice levels were the loudest he has reached yet (she has a microphone that measures the loudness and he is to aim at getting over 80 which he accomplished more often this time). He also told her his "kidneys" joke - for those of who are familiar with that one.
He felt well enough to go over to Gateway for the graduation this evening. However, the 8pm meds did not kick in and soon he was asking me to please take him home so we did not stay for all of it. Fortunately there were some strong men there to help me get him out to the car - and a couple from our condo were out walking and helped me get him into the apartment. I was very thankful as he was pretty weak.
His side did not seem to be quite as sore today so that was another gain.
Please pray for him to regain some of his strength and wisdom for the doctor to know whether to leave him at this level or increase the meds some more.
Also please pray that I will find someone to drive us into Vancouver for his appointment with the neurologist in mid August. I do not drive in Vancouver and Margie will be away on holiday at that time.
I guess I'd have to split the day again - some of it one thumbs up and some of it one thumbs down..

Wednesday, July 21, 2010

The last few days have been pretty good. John's meds seem to have been working fairly well. However, his balance is getting poorer and he is definitely getting weaker.  Tonight we went to see Madam Butterfly at the movie theatre. I was so pleased he felt well enough to go. However, I ended up having to push him on his walker because he could not walk the distance to get into the theatre, and we had a very hard time getting him to his seat, even with Margie on one arm and me on the other. On the postitive side, his voice seems to be getting stronger as he practices his vocal exercises etc.
One thumbs up!!

Monday, July 19, 2010

John had a good day today - as far as the meds working well. He still has a lot of pain from his side that he banged in the fall he had, so he is not moving much or trying to do much. His voice practice was very good today and he had the best volume we have heard so far.
Please continue to pray for healing for the pain.
A one thumbs up for today.

Sunday, July 18,2010

Last night John had a fall. Although I managed to grab him, he still hit his side quite hard on a nearby table.  This gave him a very painful night and we were up a lot of the night just trying to find a position for him that was comfortable.
It has been quite sore again today, although not as bad as in the night. Otherwise the day went faily well, although the meds were not holding again this evening so I ended up having to give him more - meaning he has only had 4 of the 6 feedings he should have had today.
Have to make last night and today two thumbs down.
Prayer requests:
- that his side will heal quickly and not be too painful
- that we will get his voice therapy practice done each day

Saturday, July 16, 2010

Another day very similar to the last two - John has had a hard time mornings and evenings but afternoons have not been too bad. I was not sure he was going to make it to speech therapy today but he decided to try and by the time we got there he was not too bad. The therapy went well today. `One of the most frustrating things is that it takes us two hours to get there and back and the therapy is for one hour. The therapy time is important but when he cannot get the words out we sit there for long periods waiting for the next word and soon we run out of time.
We are having a quiet weekend.
Another mixed day with one thumbs up and one thumbs down.

Thursday, July 15, 2010

Well, another mixed day of good and not so good. In the morning and early afternoon John did not feel well at all. He slept a lot but spent most of the rest of the time on the couch. Then he began to feel better. It looked as if he would feel OK for the BBQ. I gave him his 5pm meds but by 5:30pm when we were supposed to go downstairs, the meds had not kicked in and he was feeling pretty rocky. However, he decided to try to go anyway. Since we were still in our condo building I thought he was only a couple of minutes away from his bed if he got worse. Fortunately, he got better. We ended up sitting at a table with the couple who live directly above us - and he also has Parkinsons (although in much better shape than John) and another couple who have extensive experience and knowledge of Parkinsons because they had taken a friend for a brain implant for Parkinsons in California. John could not contribute much to the conversation but he certainly was interested in it. He nibbled at a bite of fruit and the filling of a lemon tart while we enjoyed the BBQ. Once we were finished eating I asked him if he wanted to go home and he said, "no, not yet". So we stayed for at least another half an hour, visiting with the couples at our table. He only left when they did. As Margie says, " John doesn't want to leave until the last dog has gone home."
Tomorrow we go to the speech therapist again. Please pray he will be having a good day and able to speak in his "loud" voice.
One thumbs down for the morning and one thumbs up for the evening.

Wednesday, July 14, 2010

Another fairly good day today. The evening was a little rocky. He felt well enough for me to leave him and go out for coffee with a friend, which was very pleasant. Tomorrow is the BBQ here at the condo. He has not been able to attend most events here and many residents have never even met him.
Please pray he will feel well enough to go to the BBQ and enjoy it - even if he can't eat most of the food!!
I guess this could be termed a one thumbs up day.

Tuesday, July 13,2010

John had a good day today. No crashes at all. He came out with me this afternoon while I did some shopping. He did all his voice execises and his voice was quite stromg today. He had some difficulty getting going but once he started he did very well. His new PDA came in the mail today so that made him very happy.
A two thumbs up day.
 Prayer requests - continue to pray for health and strength for both us us. Thanks so much.

Monday, July 12, 2010

John had a very tough morning and early afternoon. The meds were just not taking effect. He did not even make it to sitting up in his chair until after 3pm. However in another hour he was feeling good enough to come out onto the balcony with me and sit and enjoy the sunshine and breezes for about an hour.
The evening went fairly well, although he was very uncomfortable with his mouth. He not only has sensations of all sorts of stuff in his mouth, but now it often seems to be sore as well. But there is no infection in it. He seems to have an involuntary reflex which causes him to suck on his saliva making it impossible to open his mouth and talk. This makes it very frustrating for John and for those trying to communicate with him.
He did get his speech therapy done today and it went much better than yesterday.
I was all set to make this a two thumbs down day but now I think we will make it one up and one down!!
Prayer requests:
He is supposed to go for massage therapy tomorrow. Please pray he will feel well enough to go. He has a very sore shoulder that we would like the therapist to work on

Sunday, July 11,2010

John had a fairly comfortable day today. A few times when the meds did not quite last long enough but only for a short while. All in all it was a quiet day.  The feeding tube seems to be working fine. His mouth really bothered  him today - and during the speech practice he had a hard time getting the sounds out because of  this.
But, one thumbs up.
Prayer requests:
- that the sensations etc in his mouth would calm down
- that the meds would work each time
- that he will be faithful in doing the speech therapy and also going for exercise

Saturday, July 10, 2010

John went to the speech therapist yesterday. Did not go too well as his was not feeling very good and had very little voice to work with. However, when we got home, he felt well enough to go to a friend's birthday party and eat some cake. Happy Birthday, Jean.
Later last night was a disaster. John had asked for a sundae and I had given him a large dish of mint chocolate ice cream with raspberries on top. However, his mouth was bothering him a lot and he just sat there holding it while it melted. Eventually he spilled it - all over himself, his chair, the rug and the floor. The melted chocolate has stained his chair quite badly. Shortly after this, I went to give him his next set of meds and the tube blocked - and the meds shot out of the extra valve all over the wall and ceiling. It is orange - and staines. I tried to wash it off the ceiling but the surface on the ceiling came off too so I gave up - and we now have and ugly grey patch surrounded by orange dots! I was going to take him to emergency to get the tube unblocked but he said, wait until the morning because it was after eleven at night. During the night, the tube either blew open or came open but a bunch of the stomach contents spilled out in the bed. It made quite a mess - but unblocked the tube so that it has worked OK today. It still does not feel just right - sometimes it is hard to get the feed in. I am concerned that it may have worked it's way our of the stomach again.
Today was a much better day although Ernie and Helen, friends in the apartment building, came down to sing with John but he was having an "attack" just then and could not sing with them. He was disappointed.
He did one set of his voice exercises but could not get any volume today. Debbie came and visited and had supper with us. She brought Mr Bean's Vacation for us to watch.
Because of last night and this afternoon I am going to give it a one thumbs down. If I had written this blog last night I think I would have given it all ten finger and thumbs down!!!

Payer requests:
- for the feeding tube to work and not get blocked
- for Zeke to be able to fix our fan to use on the hot nights
- for John's new PDA to get here soon so he can keep all his appointments straight
- for grace and patience for me

Thursday, July 8, 2010

John did not have a good day yesterday. This was quite disappointing for him as it meant we could not go for the final service and farewells for the WEC Conference.
Today was much better. He was even able to join the Gateway staff for supper at a Langley restaurant. He had mushroom soup (which he only ate a little bit of) and a chocolate mousse (which totally disappeared)
It has been quite hot in BC the last few days and we do not have air conditioning in our apartment. Yesterday I wondered if the heat was bothering him, but as he was good today, I guess that is not a contributing factor.
Tomorrow we go to the speech therapist again. He has been doing his homework most days and is going to tell her his Foot Foot joke and sing Amazing Grace.
A one thumbs up kind of day.
Payer requests
- that the speech therapy will go well and that it will help his voice to get stronger
- that the meds will kick in when they are supposed to
- that the heat will not bother John too much

Thanks everyone!!

Monday, July 5, 2010

Start of a new week - three more days of WEC Conference.
Although the beginning of the day was a little shaky and John did not have the energy to get to the morning sessions, we were able to get there for the afternoon, supper, and evening sessions. And he did quite well. He even got up (and with the aid of a mike) gave his input on one of the issues under discussion.
We were very happy to see Ike and Trudy Agawin re-confirmed as Gateway Directors for the next three years.
 WEC will reach it's 100th Anniversary as a mission in 2013. In the discussion of plans for the celebration John said to me, "well, I don't think I will be here for that." I told him not to count on missing it!!! But of course, it is a reality we must live with.
Overall today deserves a one thumbs up

prayer requests
- for John to have more strength and that his balance would improve
- for the meds to be absorbed well

Sunday, July 4, 2010

Happy July 4th to all our American friends!
John did not have a good day today. He did not feel well all day and had several "crashes" - including one this evening which did not lift even after I gave him more meds. He did his voice exercises one time but was not well enough to do the second set.
I am sure that it was good for him to have a day of rest, but wish he had felt better for it.
There is one session of the conference tomorrow that I HAVE to be there for, and John wants to go too. It is on Monday afternoon. 
Please pray we will at least make that session.
I would have to give this a thumbs down for today.

Saturday, July 3, 2010

Well, another day of encouagements and discouragements. Although John had no major "Crashes" today he was not feeling all that well, so we skipped the morning sessions of the conference and the BBQ. Got there early enough to say "hi" to many friends who had come in just for this event. We were able to attend the evening session and were blessed by the worship (John got to practice his singing) and the message..
John faithfully did all his voice exercises today and shouted at me in a nice loud clear voice! I was actually surprised at how loud he could get - much better than with the therapist yesterday.
However, John's balance is getting much worse. He almost had another fall today. It took two of us to get him in and out of Gateway. I had a very difficult time getting him safely to the car at this end as well.
I think we will have to start to take the walker with us wherever we go (he has just been hanging on to me and using his cane  when we go out although he uses the walker in the apartment all the time.) I will also have to start to bring the car around to the front of the building and bring him down on the elevator rather than using the back stairs that come out right at our car in the garage.
He got his palm pilot (PDA) ordered today so that made him happier. Now he needs a new mouse for his computer, new battery for his watch and I have only 4 days left to get air care on the car and get the insurance renewed. So now you know what I will be doing in between conference sessions this coming week!!
I guess it is another one up and one down for the thumbs today.
Prayer requests:
- that John's balance will incease along with his strength
- that we will be able to get to the most important of the Conference sessions
- that John will continue to do all his voice exercises and try to use his voice more
- that I will have more patience when he tries to say something and have to wait what seems like forever, because his mouth just will not work

Friday, July 2, 2010

Last night John had a fall - landing on his hip. Thankfully he did not hurt himself. This morning, upon our arrival at Gateway, he fell down very hard on the porch, and this time he has some bruises to prove it - but no broken bones. He was quite shaken by it. Whether that contributed to the rest of the morning or not, I don't know, but he had a misterable time. The meds were not working well, and he spent most of the morning lying on a couch in the student lounge ( which is next to where the conference is being held so he could still hear most of what the speakers where saying.) But he did not want to leave and come home.
In the afternoon we went to the speech therapist at Surrey Hospital. Nahal is a delightful person and seems to enjoy John thoroughly. However, John was still not doing well, and so some of what she was asking him to do - like breathing deeply - he had great difficulty doing because of his condition. She did enjoy his two jokes.
He has a mumber of exercises to do twice each day ( like shouting ahhhh as long and hard as he can). He now has permission to shout at his wife! He also has to bring a song to sing and another joke to tell at his session next week.
By the time we got back to Gateway at 4pm, he was starting to feel better which meant that we were able to stay for supper and the evening session.
So while half the day was a real thumbs down I do have to give a thumbs up for the later part of the day!
I am still amazed at how well he has done in the last three days. I know we are being upheld in much prayer.
Tomorrow is the BBQ and public meeting so please do pray he will be well enough to attend those.

Thursday, July 1, 2010

Happy Canada Day everyone.
John woke up at 6:30 am this morning saying he needed meds (we usually start them at 8am) I gave them to him but then be began to throw up. Finally he was able to lie down and rest but said he felt awful. I told Margie and Linda that I did not think we would make it to the meetings today but because it was Gateway's time to give their report we really felt we should be there.
The ladies went to the Conference and told the prayer group that John was not feeling well - and they prayed very hard for us.
After more rest, John was able to get up, get dressed and we arrived in time for the beginning of the Gateway report at 10:30am. John felt quite good and was able to stay until the formal meetings ended in the mid afternoon.
After we got home tonight he had another small episode but it did not last long. We decided not to try and go back for the evening session - or join the group as they go to the park for the fireworks. But we hope we will be able to see them from our balcony as we ae much closer to the action than Gateway.
One thumbs down and one thumbs up today - with a big thank you for all the prayer and for God's strength for the day.
Prayer requests
1. That John will be able to continue to attend the important parts of the Conference this week and next week.
2. That speech therapy will go well tomorrow afternoon