Getting started

June 1st, 2011
Bernie fell in early May broke 3 ribs, can’t believe it what a setback. I was having him walk several times a week since March and noticed a difference in his overall mood, and health. He was walking better and seemed stronger, but since falling lost all that he had gained. I am not sure what to do at this point for his stability (falls) I do not think that a walker would necessarily be better at this point unless it was a much bigger and weighted, but again once he starts to go over I don’t think that there is much that will keep him on his feet.
I don’t want to blame all of his issues on his illness as we all develop health issues as we age but the things that I have noticed(some are not actual symptoms and some are not 100% of the time)
• Shuffling gait body aches & pains, stiffness
• Loss of balance while walking
• Frequent falls – mostly backwards
• Swallowing difficulties & choking
• Fatigue, loss of strength
• Tremors at times (mostly hands)
• Forgetfulness, difficulty finding words at times
• Urinary incontinence
• Low voice volume
• Difficulty forming thoughts
• Handwriting almost non-existent
• Dry skin – arms & legs
• Red sore flakey skin on face
• Seems to easily cut skin even by scratching
• Withdrawn
• Hygiene deteriorated – doesn’t always shower needs to be reminded
• Appetite has decreased
I’m sure I am missing a few.

My thoughts to date;
When I was first told back in 2005 by Victor Bruce PA of Schenectady Neurology that he believed Bernie had PSP I was devastated, he actually told me how sorry he was to bring such bad news to me. I started researching everything I could on this condition and was heartbroken to think that my husband could have this terrible disease.
Bernie had always taken care of his health and avid runner for 30 + years completing 13 marathons and hundreds of other foot races, constantly working out and buying numerous exercised equipment/machines for home use. I remember being upset when he spent the money on all this equipment, now I am thankful. I think his overall excellent health going into this has helped him to do as well as he is doing to date (and of course his young age at onset 54).
After the initial shock of hearing this and moving on to doctors at Albany Medical Center’s Movement Disorders Clinic, Bernie set out to fight back. He continued to run until he could no longer move his feet and run safely, he then took up swimming until he could no longer do that safely do to the fact that he could not move his legs and was swallowing water. After that he worked out in our basement on the Bow-flex tread climber & bow-flex workout machine, several times a week he has recently stopped that also due to his broken ribs. He would sometimes lose his balance doing so but was determined to stay strong so pushed on. He also has been able to continue golfing these last few years, going out a couple of times a week with friends between the months of April and October weather permitting. And over the last couple of years has had to change from golf shoes to sneakers so he could move his feet, and allow his friends to pick him up when he would fall, but the importance of just being active and being out there kept him going. He has actively played sports almost his entire life. Because of his broken ribs he has not been able to get out to the golf course yet this year and I am hoping that he will heal in time to do so, but I am also worried what effect this set back will have on him.
We have made some changes to our home such as putting in railings and getting a higher toilet. We are now looking into redoing our bathroom and replacing the tub with a walk in shower, Bernie is fighting me on it worried about resale but I told him we will not be selling anytime soon. He will be 60 this September and I just turned 52, we have 2 girls still in college and one son still at home at the age of 25. We are thankful he is home with us because he really helps out with all the things Bennie would normally do, but we are not sure how long he will stay as he is looking for a new job and might have to leave home in the near future. Our older daughter has one more year of college, she is at Upstate Medical College in Syracuse NY due to graduate May 2012 and then will be married August 2012 (Bernie is concerned about walking her down the aisle but we’ll handle that when we get there). Our youngest will be attending SUNY Oneonta this fall so we are a busy family in many stages of transition.
We have tried just about every drug out there and every diet, herb, vitamin that states it can help in any way but have found nothing that has really shown to help. We treat things as they come up and take life a day at a time trying not to look ahead at what might be. Sometimes I wish that the doctors could tell me exactly what is ahead but one never really knows how anything thing will effect anybody so we just push forward.

I go to the psp.org website and read what people have to say and get information from there; it helps to know that there are people out there willing to share their experience. I am taking these notes in hopes to help me to better understand what is happening at this time, as some days and weeks blur together and also to maybe put out there for others to read. I know that I am always looking to read about someone else’s experience in hopes that it will enlighten me in some way. Bernie will be donating his brain for research in hopes to aid in a cure someday, we have children and although they say most likely not genetic I don’t think they are sure.

More thoughts to come, I find that this is a help to me.






6/28/11

I’ve been noticing lately that Bernie’s eyes look a little unusual, red, and droopy like he is falling asleep and a bit watery too. He also has been having a hard time opening them, when I apply cream to his face in the morning (he seems to have weekly red patchy scaly and peeling issues) he closes his eyes and has a hard time reopening he sometimes has to use his fingers to get them to open. I notice this from time to time when he’s doing different things i.e. watching TV, just sitting talking to me, riding in the car, there doesn’t seem to be anyone particular time it bothers him so I just think it is an eye thing at this point. I’m also not sure it the skin thing is disease related, he has never had a problem before besides dry skin but know his skin seems for fragile he can scratch himself and break open his skin.
We picked up a walker as suggested by the doctor and took it to the mall and Bernie loved it, said it really help him feel stable. He uses a cane most of the time but he walks to fast for it and with his bad balance feels insecure, the walker was definitely a good purchase. Just in having the thought that it was a good purchase makes me think back 5 years when he was first diagnosed, I was truly frightened and to be honest figured he’d be wheelchair bound by this time, thanks to his fighting spirit and younger age with onset he is doing relatively well. But to think back just 6 to 7 years ago who would have ever thought we’d be where we are now……I didn’t think our 50’s would be like this at all. We were always an active couple doing things and going places and assumed that as the kids got older we would enjoy our later years (50’s. 60’s, 70’s and on) going south and enjoying our eventual retirement, but things aren’t not always as you plan so enjoy each and every day as it is a gift.


Take life a day at a time as that is all we really get.