Want to know

Even though I know there are no answers I still WANT TO KNOW! I want to know what comes next...I want to know where in the progression he is at this point… Is he at the point where he will be failing faster and faster…should I not be leaving him home alone while I work…Does he need more care…..am I doing a good job taking care of him, have I asked all the right questions, have I explored all my options……can I trust his opinion….. He is failing, I have noticed a big difference over the last 6 to 9 months. He speaks very little, his eyes are almost stationary, he falls or stumbles multiple times per day, he can barely get out of a chair, he can’t roll over without assistance, he can’t keep his eyes open, he picks at his skin until it bleeds, he can’t hold a utensil correctly, he over stuffs his mouth, he is out of breath getting himself into bed… However he can walk to the bathroom even though it is difficult to get out of the chair, he can use the facility and not always fall, sometimes he makes it back safely, he can pull his shirt over his head and get dressed even though it is difficult and it might take him several tries, he does eat normal food even though it is sometimes difficult ( I have to cut it and turn the plate as he goes so he can see the food), he can walk into a restaurant using his walker but then can’t get into or out of the chair, he has navigated the stairs in the house even though he knows he is not supposed to use them, sometimes he makes it safely and others he falls and we have to rescue him….. So where is he in the progression of then horrible disease!!!

8/27/14 This is the first week Bernie has been alone on both Monday and Tuesday…I leave him breakfast every morning on the kitchen table along with the paper. On Monday I called him lunch time to remind him that I had a plate in the refrigerator for him and I was sure to say it several times and tell him to go get it now so he would remember. When I got home I checked the fridge and the plate was still there. Not that it is a big deal to miss one meal but I am hoping this is not going to be a new issue to deal with. I have calls in at 2 home health care places looking into services, I want to have information on hand should I decide to hire out. I am also thinking of asking some family members stop in and check on him, I hate to put them out but I might need the help. I called him Tuesday to remind him and he did eat it that day. His eyes are continuing to worsen he has to really work to get them to move, it’s very sad to watch. His dreams are more vivid to him and he has been acting out on them. He falls out of bed reaching to catch a baseball, he swats at the air over him trying to catch balls or swat flies, and today he got up and walked to his dresser to get a pair of socks and got back into bed holding them, when I asked why he did that he said he didn’t know, he thought maybe he was dreaming… He is full of bruises and sores, he is constantly picking or itching himself until he bleeds and it takes longer for him to heal. I am assuming that some of it is due to his skin changing and weakening. I am not sure if it is the medications, the disease or lack of activity but his skin is not what it used to be. He seem more lethargic to. It gets harder each time to write an update because it seems like the same old stuff just worsening but I want to keep a dated log in hopes it might help to shed some light on the progression of this illness in Bernie. I know I have mentioned it before but he has chosen to donate his brain to PSP for research and I am planning on sending alone these notes and some videos so it shed some light on who is was when he was alive and how PSP affected him.

update 8/4/14

Eyes are failing more and more, between them closing in their own and not being able to move them up or down there is a significant progressing. After the Botox infections his left eye starts to close again after 6 to 8 weeks, his right eye is soon to follow. Moving his feet is also becoming more and more difficult, it is not too bad around the house because he doesn’t have too far to go, however when he needs to walk outdoors or further than a dozen steps his feet start to drag and he has difficulty trying to move his legs. Mouth stuffing is still a big issue and still one of the more frustrating things to handle. No matter how many time you tell him not to do it he continues to. He needs to be reminded every time he eats and throughout the meal, the kids and I normally have to tell him a minimum of 6 times during the meal. He has also started to hold the food in his mouth, he just fills it and sits there with his cheeks puffed out until we remind him to chew. He is also doing this with drinks (coffee, water, etc.) sipping and filling his cheeks and holding it there while he watched TV. The incontinence has also progressed, to the point that sometimes he wets himself and doesn’t even realize it. He has not had an angry outburst in quite some time, he is much more apathetic and doesn’t really care much about what is going on around him. He does however remind me every morning to pick up his papers and buy his lottery tickets, this coming from the same man who can’t remember to not overstuff his mouth after being reminded 20 times a day for the last 5 years… How do they remember something’s and not others? Healing has been an issue too, if he bumps his leg it takes so long to heal them leaves a discoloration that does not go away, not sure why… Oh well just logging items so I can have my record of his illness hoping maybe someday it will help someone. He has decided to donate his brain to PSP.org and I am told they like to have a description of the progression sent with the samples because they don’t get to see what they were like. The neurologist is also taking videos to send so they can see firsthand, I might start doing it also.

update

July 7, 2014 We went to the neurologist for Bernie’s Botox treatment for his eyes, and it was also the first visit after sending the doctor Bernie’s MRI from his fall. Bernie’s GP (general practitioner) told us it showed a condition known as normal pressure hydrocephalus however the neurologist disagrees. He says that Bernie has brain atrophy that is normal and classified as normal for PSP, he states that Bernie’s brain is atrophying in all the normal places he would expect in someone with PSP… so good new sort of. He is progressing at a slow but steady pace and I am happy because I thought by now we would be in a much worse position. I hate what this disease has taken from Bernie and our family, and I feel for all the people out there dealing with this same type of issue, a sick loved one. We all have our crosses to bear and many people are much worse off so I am not complaining I’m just rambling to get my thoughts out in an effort to document Bernie’s journey. Maybe it will be of help some day.

Where are we now……… This disease is so frustrating……. So unpredictable…… I guess that sums up life in general too, you never know what tomorrow will bring so you can only live today for all that it is worth! I wish the progression of this illness was more predictable, it is difficult to make long term plans and for that matter short term plans. If I knew where Bernie would be next year at this time it might help me to make more informed decisions to our life’s plan. He is definitely have a harder time seeing and reading, a harder time walking and talking, eating is still pretty good for now except for the fact that he overstuffs his mouth ALL THE TIME!. It’s so darn frustrating. We are going on a vacation in 3 weeks with the children and I will be curious to see how he does at the beach walking in the sand. I am thinking it won’t be easy with the sand moving under his feet, he tires so easily too. Although I would like to update his progression it is so hard to do because it is the same issues only worse. I guess as long as nothing major is happening we’re doing okay.

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.