I have not posted in awhile because things are not really changing significantly. I have found in Bernie’s case that he will go through a downward spiral for a week and plateau, the pattern has no real timetable but I would say it happens at least 5 times a year. When you live with a person who is affected by this disease I think you grow so use to it that you tend not to notice just how bad they are doing. I will say that his eyes are now significantly affected, his blink rate is very low, the Botox is not working as well as when he first received the shots. His eyes start closing earlier and earlier, he gets the shots every 4 months and they use to last about that long then it start losing the effects at 3 months, and now it’s like 2 to 2 ½ months and they start closing again. He is also losing the ability to move his eyes in the downward motion, although not completely lost there is a significant loss in that area, which is where the “palsy” comes in naming the disease. His speech is really bad, to the point that I can’t hear him! That is such a scary thought should he need me for anything. Just today I ordered him a personal voice amplifier and I am hoping it will work and that he will use it.  Part of the speech issue is the loss on muscle and nerve function in the throat (which also ties in with the swallowing issues) and part is due to the diminished lung capacity. If Bernie walks up the 5 or six stairs into the house he is out of breath, longer walks like in the grocery store also make him tired and breathless, any activity done during the day will make him very tired in the evening.

I will say that I think he is doing better than I would have expected when first hearing the news, I attribute that to the fact that he was afflicted with this at an earlier age than most and the fact that he was in great shape back then. I will post more when I feel I have things to say, I hate to just get on a ramble about the same things over and over again. But if I hear from anyone in particular I will certainly take the time to help in any way I can.

9/4/12

It’s been a long time between posts, it has been a busy and enjoyable summer we had been planning our daughter’s wedding. She was married on 8/17 and her father walked her down the aisle…he couldn’t have been more proud! We had some concerns as he had been falling a lot more of late and his legs and knees are very achy these days.

He is progressing both physically and mentally and it seem like more people are noticing. It has been a full six years close to seven and I am starting to worry more that he will have a more pronounced progression….although I do not know that this will happen I just seem to be waiting for that shoe to drop. That sounds pessimistic I’m sure and I hope it doesn’t happen but from all I have researched it seems inevitable.

Bernie just told me how much he would like to go to Gettysburg PA to see the battlefield and all the historic places in that area so I am taking him in a few weeks. I am hoping that he will be able to do all there is to do and figure I better get him there before he won’t be able to enjoy it. I have been thinking about getting a wheelchair to help him get around but he is not to keen on the idea. I do understand why he feels that way but he gets so short of breath these days and it doesn’t take much activity to make him tired. Whatever happens though I am glad to have the opportunity to take him on this trip and hope I can continue to go places with him in the future.

Progression noticed in the following areas;

Motor function – holding objects – glasses, spoons, forks etc.

Walking – freezing more

Speech – much worse – very soft voice – slurring words

Skin – seems to have some issues with sores – getting looked at next week

Sleep – seem to have insomnia….. not sure why

Be thankful for the small things in life.

5/14/12

Breathing is changing; short shallow breaths are taken now instead of the steady deep breathing. Snoring and sleep apnea still an issue when sleeping. Noticeably slower thought process and much softer voice, glazy look to his eyes almost like he is not completely there. Closing of the eyes becoming more of an issue can’t wait to get to the doctor in July for Botox injections, the insurance issue has become a problem and we still have a month and a half to get through before he is covered.

Not sure if anyone else out there had the same issue with insurance as we had but our primary insurance carrier will no longer cover Bernie because he is Medicare part B eligible! Crazy as it sounds…part of his retirement package included insurance coverage comparable to what he had at the time of his retirement to carry through the rest of his life.  And although his premiums are being paid Empire Blue states that they have the right to step back for being his primary insurance plan, so he has been uninsured for 6 months, and they never notified us of this change we just started getting bills for doctor visits and found out by calling to find out why. They state they have no obligation to notify us! Anyway that is behind us we need to focus on what’s ahead but what a joke these insurance companies are…..

This weekend we are going to an informational forum that the Parkinson’s Disease and Movement Disorders Center of Albany Medical Center is putting on, hoping that we learn something, the last one we attended was in NJ and I learned a lot of things to help Bernie cope with issues he was having.

Bladder issues

Bladder incontinence

Urinary incontinence and urgency is getting much worse. Now we need to try to find out what is causing this. Is it a deterioration of the disease and the brain not getting the signal, is it a prostate issue, or is it the bladder itself. A webinar posted on PSP.org addresses this issue, the timing was amazing. So now off to the doctors to see what is causing this, and I do realize that it can be more than one of the above. This seems to be another issue that faces us in treatment, that some of his issues can be caused by several things i.e. age, normal body deterioration or PSP (or a combination of all).  Bernie’s falls are still pretty consistent, we are just thankful that he has not broken any bones or hit his head, but his body usually has many bruises.

Progression is noticeable but not severe at this point, voice is weaker, although some days better than others. Wish I had more to write but I find that I would just be repeating things I have already said.   

2/20/12

Things are about the same, which I believe is a good thing. I am thankful for a nice mild winter, with the snow and ice at a minimum it helps to keep him safer than if we had it. Last year Bernie fell out in the snow and couldn’t get up for 20 minutes. I was at work and he felt like he could go out and clean up a little snow…boy did that backfire. He fell in a pile of snow and had nothing to grab on to help himself, by the time I got home from work he had shimmed his way to the deck stairs and was able to make it into the house, I had a pile of sopping wet clothes to clean up! We are heading out on vacation this week and I am hoping to spend some quality time with him, hoping to have him walk every day. His lung capacity is down so I am hoping the walking will help him.

short post

1/31/12

Eyes are closing again and again they are hard to open. I think it is too soon for the last set of injections to wear off, will have to check with the doctor on our March visit, maybe he will have to up the dose. He is still having issues with his breathing and he seems more lethargic. We are taking a trip to Florida at the end of February and I am curious to see how he will do traveling and also how he will do in the warmer weather. We both look forward to this trip, our winter get-a-way but especially Bernie. We started this 3 years ago to give him something to look forward to during the winter months. We won’t be able to enjoy the retirement we had hoped to so we try to do things while Bernie is still able to. I know it will get harder to do with each passing year but for as long as we can we will do it.

There is really not much new to report and I guess that is a good thing, we have a slow steady progression and no big downhill slides to note (something to be thankful for).

Things I have noticed lately

1/5/12

Happy New Year, hoping it a good one for all of us.

Things I have noticed lately;

Appetite has lessened, he does not seem to eat as much, slower at processing foods, takes twice as long to eat as in the past but still stuffs his mouth with food. The stuffing of the mouth is hard for me and I spend too much time watching and holding his hand down to prevent him from doing it. I explain about the choking process and how before you start to cough you take in a breath and if your mouth is full of ½ chewed food it can get lodged in the throat, but to no avail time after time month after month and year after years the stuffing continues, I don’t get it. I know it is a symptom and the person with PSP can’t help it but it is still hard for me to understand.

Quiet – he doesn’t often start a conversation or participate in a conversation started by others. This again is sad to see, Bernie was always a chatter box, center of attention.

Breathing difficulties while sleeping, short breaths taken, pauses in breathing patterns (sleep apnea), failure to take a breath for a period of time. This one is difficult as well because it deprives both the person with the illness and the spouse of a good night’s rest.  

He also has shortness of breath when he walks, we just found out at his last doctor’s appointment that his has diminished lung capacity, this in a man who for 30+ years ran at least 40 miles a week.

Well back to work my lunch is over, be back to post another day.