PT

10/3/11

Bernie has started PT again; he has gone through several series of PT over the last 5 years. For the most part I don’t think either one of us felt it was doing much good. In the beginning he would drive himself back and forth but as his condition progressed and he was no longer able to drive I would take him and that is when I was able to see what was going on. The series of exercises they were having him do I felt were not beneficial to him, and although I am not an expert and have no degree I don’t think sitting on a large ball and lifting your leg and reaching for your toes is a particularly a safe position for people with balance issues. After speaking with the therapist and trying to explain what his needs were she told me she had experience with treating people with his condition (but I don’t believe her). Recently the PA at the movement disorder center recommended PT again telling us it would be helpful with the increased falling Bernie was experiencing. I told him my concerns with going again and he told me I would have to look for someone with specific knowledge on PSP or Parkinsonism. After three weeks of looking and phone calls I settled on Sunnyview Rehabilitation Center in Schenectady, and both Bernie and I are please. We met with a therapist for an evaluation and I had brought literature on PSP and what specifically was happening in people with PSP. After the evaluation we set up a series of appointments for PT, our first one being last Friday. On our first visit the first thing the therapist said to me was she read my pamphlets and what had occurred to her most was that PSP caused backwards falls…..and asked if anyone had ever tried lifts in Bernie’s shoes!! No one had, so she went and got the lifts and put them in his sneakers and Bernie said he noticed a difference as soon as he stood up…so if you have not tried them please do……He says he feels more stable now, not so wobbly like he’s constantly going to go over backwards. This is the difference between therapist who truly want to help and research conditions before starting. She then work mainly with his balance issues, footwork and walking, it was a eye opening appointment and I can’t wait to see what she has in store next.

Todays Thought

9/19/11

Still more falls, and this particular weekend was especially bad, Bernie’s balance was way off. He fell Friday night down 2 stairs and has quite the contusion on his thigh, and again hit an elbow. He did not have the pads on because it was the middle of the night and he does not sleep with them. Our bathroom (on the main floor) should be done in a week to 10 days, and then he won’t have to go down stairs to use the facilities. I will also be moving the TV from the basement upstairs also, so he will have no reason to go down to the family room in the basement, we are at that point where we have to make major changes to keep him safe. The TV in the basement has a home theater system hooked up to it so he likes to watch things downstairs but the stairs are unsafe so he will have to make some adjustments too. He is generally slowing down in all areas, there are noticeable progressions almost weekly, unless you are with him a lot you might not notice them but they are there. He will be starting another round of PT soon so I am hoping that it will strengthen his legs and arms so he can hopefully be better balanced, I just don’t know if that will help. Although we try to take it one day at a time I sometimes wonder if the progression picks up at this point. After having this condition for 4-5 years and neuron continue to die off it just seems like it will get worse at a quicker pace. I wish I knew someone to talk to who has been through this, just to see their story and timeline, it might help me to prepare for what’s ahead.

Still Eye Issues

9/12/11

The Botox injections are helping with the involuntary closing of Bernie’s eyes, however I have noticed that his blink rate is significantly less than before and much less than what is required. His eyes are now red and dry, and he has also developed an infection. The optometrists says it is because his eyes are not blinking which would lubricate the eyes normally. So is this because of the Botox injections or again a natural progression as it could be either. That’s what makes this condition so difficult, deciding what is progression and what is considered side effects. We go back to the neurologist in December so hoping he can shed so light on this.

Bernie has decided he wants to wear elbow pads to help with his falls, he seems to fall mostly on his left side and bang that elbow, and it has been bruised of months.  I am looking into a better elbow pad at this time because he bought a set at Wal-Mart for extreme sports and although they do help somewhat I would like to see if I can get something that is a better fit, these slide down on his arm. He has fallen on it so much that he has bone chips floating around it, I am surprised that he has not broken it yet. That is one of my biggest fears it that he will fall and break a bone whether is a hand, elbow, shoulder, hip, or God forbid his head, it could set him back to the point where he might not recover fully.

I am trying to find some time where I can sit and put more thought out there but for now all I have time for are these tidbit.

God Bless,

Kelly

8/24/11

Time is flying by, we just move our youngest daughter off to college this past weekend so the house will be quiet for awhile. Hard to believe that the last one is off, where does the time go? One less at home to help keep an eye on Bernie but we’ll get by, we can’t make the children responsible for his care at this point but it was nice to know she was there and helped him out whatever he needed.  It also gave me peace of mind knowing she was home with him, my son is still at home although he works and we are not sure when he’ll be leaving us but I know he is planning something (good for him). I don’t think we are at the point where we need outside help to come in but I am thinking that it is not far off.

We are having our bathroom remodeled and they are scheduled to start this coming week, I am really looking forward to that, the bathroom is a dangerous place for people with this type of disorder. I have noticed that Bernie does not shower as often as he use to and mentioned it to him, he said he doesn’t feel safe in the shower, too many falls. I am hoping the new bathroom will make him more comfortable, we are adding several hand bars and a seat.

He called me the other day at work (woke up from a nap and was disorientated) wanted to know where I was…. told me he had lost our dog. I had to talk to him a bit and settle him down but he came around. I have noticed this lately when he sleeps during the day, he wakes up and is unsure of things, this doesn’t happen after a full night’s sleep just the naps, and wonder if anyone else has experienced that? He can also be very agitated upon waking from a nap yelling at times.

Now I am babbling, trying to put a post out, I wish I had time to sit and really compose  a post but it seems like I just have little snippets of time to put my thoughts down so I apologies for these scattered thoughts, I will try harder in the future.   

Take Care and God Bless

Issues Arise

8/15/11
This past Saturday Bernie told me he was having a hard time seeing, things were blurry. He said he noticed it about a week after the injections, so is this a side effect? I did some research and it is really not a prominent side effect although there are some that state it could be, mind you most of these reviews were from people have cosmetic surgery. Blurry and double vision are considered a symptom of Progressive Supranecular Palsy so is this just a progression of his condition that coincidently came on after the injections? I’m not sure.

Progressive Supranuclear Palsy
Symptoms;
The most frequent first symptom of PSP is a loss of balance while walking. Individuals may have unexplained falls or a stiffness and awkwardness in gait. Sometimes the falls are described by the person experiencing them as attacks of dizziness.
Other common early symptoms are changes in personality such as a loss of interest in ordinary pleasurable activities or increased irritability, cantankerousness, and forgetfulness. Individuals may suddenly laugh or cry for no apparent reason, they may be apathetic, or they may have occasional angry outbursts, also for no apparent reason. It must be emphasized that the pattern of signs and symptoms can be quite different from person to person.
As the disease progresses, most people will begin to develop a blurring of vision and problems controlling eye movement. In fact, eye problems usually offer the first definitive clue that PSP is the proper diagnosis. Individuals affected by PSP have trouble voluntarily shifting their gaze downward, and also can have trouble controlling their eyelids. This can lead to involuntary closing of the eyes, prolonged or infrequent blinking, or difficulty in opening the eyes.
Another common visual problem is an inability to maintain eye contact during a conversation. This can give the mistaken impression that the person is hostile or uninterested.
Speech usually becomes slurred and swallowing solid foods or liquids can be difficult.

I will say the injections have helped with the involuntary closing of his eyes so I am pleased there but if blurry vision is a side effect Bernie will have to weigh the pros & cons and make a decision.
A new issue that has come to light is the inability to lean his head back. While taking a drink I noticed that he was having a hard time getting the 1/3 of the drink down, I said to him lean your head back a little and he said I can’t! So I tried to make him do it several times but he couldn’t. I have been putting drops in his eyes this past weekend hoping it might help with the blurriness but he can’t lean back to receive the drops, he needs to lay down to do it. I know we all get a little stiff with age but I think this is more a symptom of his condition then aging.

Well I need to sign off for now but I am hoping I will have some real time soon to report other things, I want to get all I can down in writing because when you live daily with the ins & outs you tend to not notice things or once noticed you consider them the new norm and don’t think to mention it to doctors, or family members.

I am trying to keep Bernie’s family updated on what is happening, however with everyone having their own issues to deal with I sometimes feel like I should keep Bernie’s issues to us. It is a dilemma to be sure….. I want them to know what’s going on so they can make decisions on how they want to approach spending time with him and I want them to know that even though Bernie is handling it so well that he is struggling inside with what is happening to his body. A man who always and I mean always took great pride in keeping in shape and working out and playing sports, and then to be hit with this depilating disease has taken both a physical and mental toll on him. I don’t want anyone to have regrets on should have could have but didn’t.

Botox Treatment

8/5/11

Wednesday Bernie had the botox injections, everything went well. The doctor said it would be about 4 weeks until we see the full effect if indeed it helps him. He could have one of two issues going on with his eyes the first being:
Apraxia of the eyelid - is a disorder caused by damage to specific areas of the cerebrum. Apraxia is characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning, thus difficulty in opening the eyes.

And second;
Blepharospasm - is a muscle disorder that causes involuntary spasms of the muscles around your eye. These spasms can result in uncontrolled narrowing or closing of your eyelid. This could impair your vision, and make everyday tasks such as driving or using a computer difficult.
Early symptoms
If you experience any of these symptoms, you could have blepharospasm:
Dry eyes or watering eyes
Light sensitivity
Increased blinking
Ocular pain
Soreness

We are hoping for the later because the injection don’t usually help with apraxia because that is essentially a brain issue where as the blepharospasm will be helped by the injection. It causes the spasms to halt so opening of the eyes is easier, although it only last for 3 to 4 months so the injections will have to be routine.
Bernie received a total of 10 injections one at the bottom of each eye one at the outside corners of each eye two on the top eyelid of each eye and finally two in the area between the eyes. Besides a slight discomfort at the injection site and a few droplets of blood it was relatively painless. I will say that I do notice a difference already at the area between his eyes, it is much more relaxed and no scowling. I will keep you posted as the weeks go by on whether it has helped him to keep his eyes open and open them easier once he does close them.

Living life

Not sure just who is reading this blog if anyone for that matter, but if you are reading it and it helps you to understand this condition, or if you’ve faced a similar situation and get a tip from me I am happy. I am mostly doing this because of the many people I have spoken with who just want to know what goes on with other in this situation, what might come next, how others cope.
I have mentioned previously that I think my husband has come to a point in this condition where he is not able to bounce back; the progression at this point is a slow steady downhill progression. More falls, more sleeping, more voice deterioration, more eye issues, muscle deterioration and withdrawal. I am sure I can list many more but I think the point is made. My goal now is to spend as much quality time with him and do as much as we can while he is still able. I have to sometimes force him to come with me on little errands just to get him out in the fresh air and to stimulate his senses, he really just likes to sit at home. I wish I could afford to travel with him but we do not have the funds to do so, I know he would love to go to Ireland and I keep my eyes peeled for trips advertized such thinking maybe we will be able to take advantage of it, I hope so. We still have 2 kids in college and a wedding next summer so it won’t be any time in the very near future but it’s always nice to have a day dream. We still have our Friday night date night where we go to dinner, sometimes with family and sometimes alone, but I won’t give it up. We live near Saratoga Race Track and I took him there this past weekend, just for a few races but it was nice to get out, I am planning on taking him a few more times, I think it’s important to stay as active as we can while he can. I would suggest that to anyone going through an illness with a loved one, don’t be afraid to make the effort to go out and do things and see places, even if they give you a hard time about leaving the house, you’ll only regret it later when you realize it is not possible to make those trips. They don’t have to cost anything either, a ride around the lake, a trip to a local park with a book. I feel like I am rambling and I think you get the point.
Signing off for now, don’t be afraid to post a reply, ask a question or two or even tell me if you’re going through something similar.

May God Bless you all,
Kelly