I have found it very difficult to keep everyone updated on John's condition but we have greatly appreciated all of the love, concern and prayer we have received. So I decided to follow the example of a friend of ours, and write a blog instead. This way, I have only one entry to write, and all of you can check it whenever you want an update.
However, today, because it is the first one, I will give a history of how we have come to this point in John's disease.
Six years ago John was diagnosed with Parkinson's Disease. For the first few years it was a fairly mild form, with some shaking and tendency to "freeze" when he tried to walk. These are typical symptoms of Parkinsons and were controlled fairly well with a medication call Sinemet.
Since there is no know cause or cure for Parkinsons, and since symptoms vary greatly with people as does the rate of the progression of the disease, the prognosis is also varied. Parkinsons is not usually a fatal disease in itself - but does lead to other complications like falls or pneumonia or other life-threatening complications.
About three years ago John began to have times in the day when he could not get his breath, felt very weak etc. After examining almost every organ he owns (and finding out he was in great shape for the shape he was in) it was determined that he simply was not getting enough of his Parkinsons meds. They were increased substantially and others added to increase their effectiveness. After a lot of trial and error, we finally found a combination which kept him fairly comfortable. He took them every three hours and as long as they were not taken with a meal that had much protein in it, they worked well.
But as with many medications, these do not come without side effects.
Last summer John began to claim that he had "things" in his mouth - strings, wires, curly ribbons, sequins glued to his teeth etc. We thought he was going crazy! It turned out that all these sensations are being caused by the meds but they are very real, and very uncomfortable to him. At the same time, he also complained of the saliva in his mouth tasting horrible and thus changing the taste of food. Sometimes he would choke on his saliva as it "gushed" into his mouth.
The result of all this was that he began to eat less and less. He lost a great deal of weight and currently weighs 116 pounds. These sensations also tend to get worse in the evening which makes it very difficult for him to sleep.
The neurologist has never had another patient with these symptoms - and although we know they are caused by the meds as they disappear when he does not have them - there does not seem to be anything that can be done for it as he has to have the meds.
Parkinsons is a disease that affects the muscles which are not getting enough dopamine to do what they are supposed to do. Sinemet is a drug that supplies a synthetic form of dopamine.
The muscles in John's face and throat are now being affected, making chewing and swallowing more and more difficult. Tests showed that John no longer swallows automatically but has to consciously think about it - which causes a build up of saliva in his mouth too. He also has a delayed swallow which has meant that the epiglotis does not close quicly enough over his airway and that can mean that food or meds may go down the wrong way, causing aspiration and this has led to several bouts ( 4 in the last two months acutally) of pneumonia.
Finally there began to be times when he could not swallow his meds at all.
Therefore, the decision was made a few weeks ago to put a feeding tube into his stomach so that meds and nourishment could be given to him that way.
He gets 6 cans of a high protein supplement each day. They are easy to give to him. If he feels like eating regular food and can get it down, he can still eat as well. He likes ice cream.
But while the feeding problem is more or less solved (even though I feel like I am back to giving formula to the baby) the meds have proved to be a much bigger problem.
When he was able to take the pills orally, he was on two different forms of Sinemet - a fast acting one and a slow release one. One looked after the inital need and one took him through to the next dose. But with the tube feeding, everything needs to be in liquid form and the slow release pill gets it's properties from the covering around the pill that allows for the slow release of the med. So he cannot have that any more.
The result has been that the fast release does not last for the full 3 hours. In fact, he spends at least an hour or more out of every three hours in great discomfort - I think to say agony would not be an overstatement. He not only cannot get his breath (because the muscles are tightening around his lungs), his vision becomes blurred and one eye closes completely,the muscles in in back go into spasm, he becomes sweaty and very weak and unable to walk on his own. This means I cannot leave him alone when he is like this. In medical terminology - when the meds are working he is "on" and when they are not he is turned "off".
The neurologist has tried to add other meds to increase the effectiveness but this has not helped.
The meds cannot be given closer than every three hours because the high protein feed is given in betwen each one and there has to be an hour seperating the two or the meds just do not work at all. I was told it is like a bus - if the protein fills up all the seats then there is no room for the Sinemet to sit down.
Once again the neurologist has not had another patient like this. Leave it to John to be so special!! Today the specialist went on line and found one example of someone who had similar symptoms and it was estabished that the problem was an intestinal infection. So, tomorrow our GP will give John some antibiotics just to see if he might have the same problem. If not, then neither the specialist, the GP, or anyone else we know of, has any idea how to help John.
Please, if you are a praying person, pray that they will find a solution to enable the drugs to work properly and for John to rest comfortably in the day, sleep at night, and gain back some weight and some strength.
Many of you have asked how I am making out.
Thank you everyone for your concern for me too. Actually, I am doing quite well. Although life is now very structured with meds or feeding every hour and a half from 6am in the morning until midnight, I find that I am handling it all quite easily. No, I do not have any help coming in at this point because I really do not feel I need it. When I do need it, I will get it. I still manage to run out to the store etc. during the hour or so John feels OK. Once in awhile John feels well enough to go out with me. Those are special times. Saturday night we managed to have supper at IHOP and John even ate a bit of supper there.
My greatest difficulty is having to watch John suffer so much and being unable to do much to ease his suffering.
Sorry this has been so long. I promise the future posts will be shorter.
Blessings
Bev
