July 27, 2011
We will be going to the doctors on 8/3 to have Botox injections, I am hoping that this helps and will post results for anyone interested.
Kelly
Monday, July 25, 2011
Tuesday, July 19, 2011
Eye issues
July 19, 2011
Calling the doctor today…Bernie has been having an issue with keeping his eyes open, they just seem to close on their own and once closed he has a hard time opening. I notice that he uses his hands to try to pry them open, I know this is part of his condition but I am not 100% sure why, I will be investigating that later but for know I am calling the doctor to see if anything can be done. Every morning when I get up I hope it will be the day when he bounces back but I am disappointed every morning because it isn’t happening. I try not to think about what will happen next and just go with what happening now but lately I feel a little scared of what’s ahead, (I am assuming that this is normal) I can only imagine what Bernie is thinking.
Calling the doctor today…Bernie has been having an issue with keeping his eyes open, they just seem to close on their own and once closed he has a hard time opening. I notice that he uses his hands to try to pry them open, I know this is part of his condition but I am not 100% sure why, I will be investigating that later but for know I am calling the doctor to see if anything can be done. Every morning when I get up I hope it will be the day when he bounces back but I am disappointed every morning because it isn’t happening. I try not to think about what will happen next and just go with what happening now but lately I feel a little scared of what’s ahead, (I am assuming that this is normal) I can only imagine what Bernie is thinking.
Friday, July 15, 2011
Turning Point
I think we have come upon a turning point, it use to be that Bernie would have a bad week or so when a progression would take place, then he would start to get back to his old self again, well that’s not happening. Now it seems that his old self is not there. He looks different now, he actually looks like something is amiss, his eyes are glassy and droopy, I find him sitting with them closed a lot. He rarely talks anymore and when he does it is so hard to hear and understand him. I have seen the changes in him over the years but until now I would not worry so much, I knew that with every progression period that he would change a bit but I don’t think I was prepared for it (as I thought I would be). Even my daughter noticed and is having a hard time with it, it will take us awhile to adjust I’m sure. My children have been great with their father, helping him when he needs it whether that means helping him up after a fall, carrying an item for him or driving him around, they have been great. The other night my son helped Bernie shave his neck, it was bitter sweet to come across them in the bathroom. This man was such an out going fun loving person and the life of every party we attended which makes it even harder to watch this devastating deterioration of this once marathon runner.
I haven’t told him about my blogging yet, I am keeping it to myself for now, I didn’t tell the kids either just two of my sisters who don’t live near me. I’m not sure I want him to read my thoughts yet. We have all been dealing well with this illness but especially Bernie, I am amazed how he fights it each and everyday. I pray for strength for all of us daily and so far those prayers have been answered.
Recent changes;
Droopy eyes, red, watery, and closed a lot to the point of having to use his fingers to open them sometimes
Very low voice, extremely hard to hear, very quiet lately
Many falls over the last few months and states he feels very unsteady
A bit of insomnia, late nights watching TV , can’t say if he’s napping during the day because I am not here but I hope so
Taking much longer to eat a meal, and doesn’t seem to eat as much
I haven’t told him about my blogging yet, I am keeping it to myself for now, I didn’t tell the kids either just two of my sisters who don’t live near me. I’m not sure I want him to read my thoughts yet. We have all been dealing well with this illness but especially Bernie, I am amazed how he fights it each and everyday. I pray for strength for all of us daily and so far those prayers have been answered.
Recent changes;
Droopy eyes, red, watery, and closed a lot to the point of having to use his fingers to open them sometimes
Very low voice, extremely hard to hear, very quiet lately
Many falls over the last few months and states he feels very unsteady
A bit of insomnia, late nights watching TV , can’t say if he’s napping during the day because I am not here but I hope so
Taking much longer to eat a meal, and doesn’t seem to eat as much
Friday, July 8, 2011
Falls falls and more falls
Falls falls and more falls, that what these last two weeks have brought. Bernie is bruised and battered from all the falls he has taken lately the latest of which was this morning in the bathroom. Yesterday he fell out side walking into a shorter chair that he says he couldn’t see. His elbow is really sore, it seems to be the one he is consistently landing on, this hip and thigh on that side too are bruised as well. Does this mean that he needs some one with him at all times? I am thinking yes but that will be so hard to do for several reasons. First I am not home all the time because of my job, second I think he would fight me on this for a while. At all of our pivotal junctures it seem to take me months to get him to see that my ideas are what is safest for him. He fought me on the cane, he fought me on the walker, he fought me on driving, etc. It is so hard for him to live with this everyday and face the limitation this disease has put on him, I give him so much credit though because he fights it everyday.
Thursday, July 7, 2011
Body Aches & Pains
7/7/11
When Bernie was first diagnosed he complained of body aches all over. He said his whole body ached like he had played football with professionals and got beat up, this lasted for several years. He would complain now and again about the soreness/stiffness, but hasn’t for the last year or so…well its back. He says his whole body aches again and even his stomach feels like he did 400 sit-ups, it’s been going this past week! Not sure if this means there is a deterioration going on but that is my thought at this point especially since I have noticed some changes in him this last month. I don’t know if the natural progression of PSP/Parkinsonism is that it seems to intensify more as time goes on or because he has lost so much already that it just seems worse now….. He is definitely going through a progression period.
When Bernie was first diagnosed he complained of body aches all over. He said his whole body ached like he had played football with professionals and got beat up, this lasted for several years. He would complain now and again about the soreness/stiffness, but hasn’t for the last year or so…well its back. He says his whole body aches again and even his stomach feels like he did 400 sit-ups, it’s been going this past week! Not sure if this means there is a deterioration going on but that is my thought at this point especially since I have noticed some changes in him this last month. I don’t know if the natural progression of PSP/Parkinsonism is that it seems to intensify more as time goes on or because he has lost so much already that it just seems worse now….. He is definitely going through a progression period.
Monday, July 4, 2011
Happy 4th, and what a beautiful day it is. We had a great weekend, several picnics, and Bernie & I hosting one this past Saturday. I am trying to do more and take Bernie more places lately because I don’t want to look back and say I should have. As I watch him through his progression I can see that things are getting more difficult for him so while he is still able I want to keep him going. He does tire more easily so we are usually the first to leave any function we go to, but always happy that we went. Bernie seems to stay by himself more and more whereas in the past he was the life of the party and I always had to drag him home. He is having a difficult time with his voice and can barely be heard, his speaking and swallowing have been an issue from the onset , but have really progressed these last 6 months. The last few days he has complained of body soreness, says that his whole body hurts…arms, legs and even his stomach, says he feels like he did a hundred setups when in fact he has done none. Not sure what that’s about but I will keep an eye on it and see what a couple of days brings. When he was first diagnosed he had a lot of body stiffness and soreness, it either didn’t bother him too much lately or he figured it was par for the course but hadn’t complained in a while and now it’s back. I had him soak in the hot tub this morning and he seemed to think that helped.
I have noticed some real big changes in him lately and am getting worried. When reading on this Parkinsonism they say 10 years from onset to death, from walking to walker to bed ridden so as we approach the end of our sixth year of this I am frightened of what is to come. I will take it a day at a time but still the prospect of a more dramatic change in him seems daunting.
I have noticed some real big changes in him lately and am getting worried. When reading on this Parkinsonism they say 10 years from onset to death, from walking to walker to bed ridden so as we approach the end of our sixth year of this I am frightened of what is to come. I will take it a day at a time but still the prospect of a more dramatic change in him seems daunting.
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