Update May 2012

This past month has been scary.  Don has been quiet, polite, subdued.  But drooling has been really bad for nearly week.  Swallowing is very difficult.  Choking not an issue because the food does not get that far.

Friday morning he had his normal oatmeal, banana, juice, eggs, and bun. He could not eat his lunch or dinner. Saturday he ate 2 small pancakes and a little juice.  He normally would eat 4 large pancakes, a banana, and juice.   Again he could not eat or drink his lunch.

After lunch that he did not eat, we went shopping to purchase more patches for the tissue box holders.  He sat quietly the whole trip.  He did not want anything to drink.  I’ve been concerned about dehydration and now I was starting to really worry.  In the past two days I don’t think he drank 8 ounces of liquid.  But he was still losing all that fluid in his drool.    I know this has been playing on my nerves and my conscience… was I the cause – neglecting or missing something?

I have been giving him additional Ropinerole or Carbidopa/Levadopa a half hour before dinner hoping it takes effect before I serve the meal and he will be able to eat.  Lately that plan has not been working. Considering his state I decided to give him a larger dose, it could not/would not do any harm.  It took 45 minutes but finally it took hold.  He wriggled and danced in his wheelchair which I know he hates, but it signals the drug is working.  I got him to eat… and boy did he eat!  4 large eggs, sausage, potatoes, 3 pieces of cake, left over pie, soda, juice.  Made up for not eating all day, and part of day before. 

I guess we are back to a larger dose again until he gets maxed out with hallucinations, irritation, demands, confusion.  Might be only a few days, maybe a week and I’ll be cutting him back again.  At least I get a momentary reprieve from worry about dehydration. 

Blog 9/30/2010

Husband had a choking incident. Scared the devil out of me. He was choking on a tuna sandwich. The CNA called the EMTs while I worked on my husband to free the item lodged in his throat. He was able to bring up the piece of bread that had been stuck, but it was the worse “close call” so far. The EMTs arrived and checked him over. Husband has now decided to pay more attention to his eating and chewing (with the couple teeth he has left), to avoid choking again.
It’s been said that Parkinson’s won’t kill you, but the conditions it causes can do you in. I think when my husband’s time comes he will choke to death. Not a pleasant thought. When his Carbidopa/ Levadopa (hereafter called “C”) wears off, his muscle control slows making it hard for him to swallow and to speak.
Sometimes he gets to fussing over taking his pills as he did in 2006 when he wound up in the hospital. I have to explain and remind him the consequences of not taking his “C” meds. He hates the pills and the dyskinesias (wiggles) it produces. I don’t like giving him this pill because I know what it does to him. But without it he can’t move.
The wiggles start 20-30 minutes after taking the pill and can last 1 to 3 hours, slowly winding down. He was prescribed to take this pill 4 times a day. If I gave him the pill that frequently he would climb the walls. That’s not even considering the other side effect of hallucinations.
The “C” is crucial for him to be able to move. Being able to move his facial muscles helps him to chew, to swallow, and to speak. A short time after the “C” has taken effect he is able to speak very well and he will talk you under the table with stories of his earlier days camping or driving truck or fishing. But when the pill wears off, within 2-3 hours, it is nearly impossible to understand him. In frustration he will throw his hands in the air and scowl. And for the rest of the day he will try in vain to communicate, only to get angry with me or his CNA claiming we need hearing aids. If I convince him to take a little extra “C” to hold him over, within 20 minutes he is usually able to speak again. He gets the wiggles again and a short time later, maybe an hour, the benefit will have worn off. Nothing is predictable with this disease.