Just wanted to give you all an update on Bernie.He fell this past week (on the 25th) and hit his head and is recovering nicely. While he was at the hospital they did a CT scan and found a couple of things that they feel need to be addressed and we are now looking into. He has a couple of cyst/nodules on his thyroid and he has NPH – Normal Pressure Hydrocephalus – water accumulation in his brain. We have a few more tests to get through before we really know much more. For now we have prayed for healing and direction and will wait to see what the other test show and take whatever steps necessary from there.

Wheelchair

We heard that the wheelchair was approved by our insurance so we are expecting it by the end of the month! I am excited to think that Bernie will have the ability to go outside and enjoy the sunshine this spring and summer. He will be able to take the dog out and even walk her around the neighborhood! The next step will be PT to help him to learn how to use the chair inside the house and to get outside the house without crashing! I will need to wait for the ground to dry up a little and then install ramps, and schedule an appointment to have a hitch put on my car so I can get a wheelchair cart to tow the chair. It’s a big step for Bernie and all of us for that matter; I hope and pray that we all transition smoothly.

Glasses

Bernie had an appointment with the eye doctor, the examination showed a significant reduction in eye movement especially looking downward. He also stated that his eyes are not working in unison with each other which is a muscle issue. We ordered him glasses with prism in them hoping that this will help, I will check in later to let you know. He also mentioned that he had two patients that had had strokes and were having issues with their eyes working together; he recommended that they take vitamin B complex daily, and stated that it worked for them. He saw noted improvement in their eye movement and recommended that we try it for Bernie. So we started that yesterday and I will see what a month brings and let you know, if it works in helping him to read I think it is worth letting others know. Bernie loves to read and it is about all he can do these days so we are willing to try just about anything. We still have not heard anything back on the wheelchair, whether it is approved by our insurance or not, hoping to hear something soon. They did tell us it could take 3 to 4 months so I don’t want to push them too much at this point. That’s all for now…..

2/10/14 - checking in

This is the most frustrating illness…there are days when you are thinking the road is straight everything is manageable and then Bang another day you look at him and think wow look how bad he looks! You start to worry, tell close family he’s progressing and getting worse mention you’re concerned, he looks tired, weak, his eyes are unblinking and unable to move in any direction. They come by in a day or two for a visit and he doesn’t look so bad and his eyes don’t seem to be staring in that one direction, he can’t move them much but he looks okay and they think you’re nuts or making more out of it may be looking for attention..I don’t know but it’s hard to know what to do. The incontinence issue has me baffled, sometimes he will have accidents few nights in a row other times he wakes up at night to go and stays dry and the cycle continues like that. One would think that once you start to have inconvenience it will get worse and you would continue to have the issue. I use depends and many nights they are dry and he won’t want to wear them so I don’t insist and then the bed is wet…….. How do you know what to do? This illness affects the entire immediate family, those living with the person with PSP. Although it certainly affects the person will the illness more, and I would never suggest anything other than that it still touches all of us.

update 1/28/14

Bernie starts PT today, twice a week for 4 weeks. This will help strengthen his right quad muscle that was torn in one of his falls. He needs the therapy both for the injury and to strengthen his legs for the anticipated wheelchair. As for the wheelchair we have completed the PT evaluation portion, and next is the face to face with the neurologist, that is set for Monday the 3rd of February. Once that is complete all the paper work will be submitted to the insurance and hopefully it will be approved and in a couple of months we will have the chair. As soon as the warmer weather gets here (we live in the northeast) we can start building the ramp so Bernie will have access to the great outdoors! Progression; Bernie’s eye issues are very noticeable now as are the progression periods he has been through. The Botox injections he received every 4 months are not having the same effect they use to. The neurologist says that when they no longer help then he will have to stop giving them. He is slowing down in all areas it seems, his appetite, his socializing, his weakness in arms, legs etc. Although he is still doing pretty good in my opinion I can see where he is weakening, surprising though he can eat foods and does not require pureed food yet. I do have to cut his food into bit size portions for him and have to constantly monitor him because he over stuffs his mouth to the point where he can’t close it! This is a constant struggle and I think why some people go to pureed foods sooner and it is something I am considering to help alleviate the over stuffing. This illness takes everyday management and is why it is best to have someone with them at all times. Bernie still has some periods during the week where he is alone but not often. I am signing off for now and will update again soon.

wheelchair

After an evaluation they recommended that Bernie get a power wheelchair not a scooter. The reason for the power chair is so I can use the controls when he can’t and I won’t have to push him up ramps. I am happy with this decision and am being told that the process could take up to 3 months before we receive the chair. Bernie is not 100% happy to be getting the chair as it is another step in losing part of himself but it is for the best. It will keep him from falling so much and injuring himself. The last bad fall he tore his quad muscle. I see a big decline in his overall appearance, I was showering him last night and really looked at his legs and he is losing muscle mass. He use to have the strong legs of a runner and now they look frail bruised and weak. He is picking at his skin all the time, he says it itched, yesterday it looked like he was attacked by a cat on his chest! His doctor says that psoriasis is a condition associated with Parkinsonism. He has sores on his head and face from picking them and now it is affecting his limbs, how much more can he take to go wrong with his body….my heart aches for him.

12/12/13 Last evening Bernie had another incontinence issue, I was up changing the bed at 3:30am.Everytime he has an accident he tells me he was dreaming, I am not sure why he says that, if he feels he needs and excuse or what but I don’t think it has anything to do with dreaming. I always wonder what gets him up after though because half the time he is getting out of bed and that’s what wakes me up only to find out that he has wet the bed. When I got up for the morning at 5:30 I set the coffee maker up, took the dog out and then started my shower say about 5:45, half way through my shower I heard several bangs, I always leave the bathroom door ajar so I can hear him should he get up. What he had done was instead of coming in the bathroom like he usually does when I am in there, he attempted to go down the basement stairs to use the downstairs bathroom! He was very luck that he had ahold of the railing and stumbled a few steps at a time, although he fell and stumbled several times as he was attempting to get up. By the time I had gotten out if the shower and dried off a little he was upright and at the top of the stairs completely out of breath. He had quite a large bruise and skin burn up one side of his arm running from elbow to wrist and the other arm looked to have a smaller patch of run burn. I got him back in bed and explained again how he needs to stay on the one level of the house and never go down the stairs alone, he was lucky again not to hurt himself too badly but he is pushing the envelope and one of these times he is really going to hurt himself. The hardest thing about this condition is that the people affected don’t seem to have the presence of thought to realize they should not be doing these things like walking up or down stairs, putting pants, shoes, or shirts on while standing etc, using common sense just is no longer an option for them, they don’t seem to have that ability. The doctor has mentioned to me that it is time to think about getting a mobility scooter to get him from room to room safely but I am nervous about putting him in something that he can hurt himself in. I am doing a lot of research on the scooters and hope to make an educated decision soon. Signing off for now…