no quality of life.....?

[emazros]

you all seem so strong, my step father (peter) has had psp for 8yrs now, i find it hard to remember how he was, now he is always sat in the same chair watching tele my mum cooks for him cares for him she took him to a day centre last wk to try and give him some sort of quality of life and also a break for her, but he didnt enjoy it he was alone all day he cant speak, walk, embarrased to eat in front off people, its so sad... its like he's trapped in this body we once knew..

[jennifer-nind]

Hi

Dealing with this dreadful illness gives you an inner strength to deal with things. Yes, we all seem strong but we do have our down times in quiet moments but it is the caring for our loved one and trying to keep as normal as possible that gives some sort of courage to go on.

The PSP forum and this blog site are great to let off steam and get help and advice from others.

Keep posting .

Thinking of you and your family

Jenni

[Pinda]

We do all know exactly what you mean.....we are all in the same position,it is dreadful ,almost unbearable to watch some one you love,just disintegrate in front of you,bit by bit,over a period of years.They are indeed locked in their own bodies and minds.

Strength for the future,know you are not slone,there are a lot of us out there,doing anfd feeling the same,day in day out.

[Idris]

Such a familiar story. It's unbearable sometimes to watch someone you love becoming a prisoner in their own body. As others have said, you're not alone, hang in there.

[jimandsharynp]

My wife is early on in this terrible PSP thing. I'm dreading what lies ahead. I faced this in my first marriage of 31 years when my then wife had the brain disorder Cruetzfelt-Jacob Disease which is very similar to PSP but MUCH quicker. It is difficult to remember, as time passes, what our loved-one was like before the disease but we must try to remember as many good times and good traits of our loved-ones while seeing what the ravages of PSP are doing to them. Sometimes we just float through life not making much of a mental note of the good times so it is difficult to recall them later. My heart goes out to you and others caring for PSP family. We must stick together and help with support. I'll need that later on as PSP progresses in my dear wife. At the moment symptoms are there but not taking over.

[Kathy]

As the others have already said, we know how you feel!! Sadly, there is no easy answer - it is the nature of this awful disease

Mum enjoys looking at old photo's and will often make comments about them or the people in them ( her speech, generally, is quite poor these days). It also helps us to remember her when she was in good health. Just an idea!

Do keep blogging - there will always be somebody who is going through or has gone through the same problems you are having. Even if they can't suggest anything useful just knowing you are not alone is a great comfort!

Take care

I emailed you my contact details after your previous blog - do please feel free to use them if you want to xx

love

Kathy xx

[Jeff]

Jenni was right about the 'inner strength' we muster when needed! The time I spent looking after Jeff at home was the hardest thing I have ever done in my life! He was still able to get around a bit and could sit at a table and have a meal but was falling a lot and having 'accidents' pretty much daily. The worry, the non stop work, on top of a full time job running a company was unbelievable. But I did it and now, I'm so glad I did! I had all those moments with him that were still good and we did enjoy a few good laughs and shared some wonderful memories of times gone by. I wouldn't have given that up for everything.

Now that he is in a care home with a high level of care and is strapped to a wheelchair with a catheter bag hanging from it, I look back and think that it wasn't that bad at all. At least he was with me and we could talk and share everyday. Now he is an hour plane ride away and he can't even answer the phone. So to go from caring for him everyday to not even being able to talk to him on the phone everyday.....misery!

We are a lot stronger than we think and it takes something like this to bring it out. The support and understanding of this group is a tremendous help!

Sheri

[hazelb]

Hi...all I can do is agree with all the others. We all feel the same. My husband Frank passed away in April & I really can't remember what his voice was like before PSP took over. It's also hard to remember what he really looked like as he changed so much. I keep a photo of him ( taken on one of our many holidays pre-PSP ) on the table in the living room. Slowly but surely it's beginning to erase the picture in my mind of him in his last days. Everyone used to tell me how strong I was but they didn't see me when it all got too much & I was screaming with frustration. It gets to us all. You just find the inner strength from somewhere. Take care & try to keep smiling. Love Hazel B xx

[Mira1]

I have been reading this blog for many months now and have always been hesitant to respond, because whatever has been said, has left me with the thought --'just wait, it gets worse'. I didn't want to be the only one filled with anguish and intense sadness. However, seeing what has been posted here makes it clear that you ALL know the ravages of this disease,-- the brutal entrapment, the loss of dignity, the frustration of being unable to communicate, the loss of a lifetime of affection and companionship and the crushing burden of knowing that there is nothing you can do other than be there for this beloved person around which your whole life once found meaning. In my case, it is a husband of 56 years--a once powerful man, beloved in our community and adored his family. But it's not only the loss of ALL neuro-motor function that dismays me, but he has also been tortured by paranoia and occasional hallucinations. The only 'control' that he can still exercise over us is by refusing to take any meds that would ease the psychotic---(and the constipating effects) of PSP. None of you have dwelled on the psychotic. THAT is what leaves me wondering if I can ever be able to remember the more than 50 years of a nearly idyllic, blessed life together. Yes, somehow, we have all managed to find an inner strength that we didn't even know we were capable of. Sorry if this is a downer, but I often feel that no one knows how awful this disease really is ---and now I know I am not alone.

[dllera in reply to Mira1]

Hi Mira - I have to respond directly to you. You are not alone! My dad went through terrible paranoia and hallucinations. He thought people were trying to poison him, he thought one of our carers guitars was a machette and he thought the "Koreans" were going to get him (he had been in the military at the end of the Korean war). The only funny hallucination was when he thought he had monkeys in his room and he wanted them out because they were dirty and bugging him. This was a terrible phase but luckily it was a phase - I would have to go back and look at my charting notes because I can't remember how long we went through the phase. Eventually we got to a place where he was worried about classes (college) and that he had to get to classes etc. Those were easy -like it's the weekend - you don't have class today or it's a holiday etc. I caution the use of lorazepam because it can make people with a neurological disorder much worse -it can intensify the symptoms. As you know -these episodes are real to the person experiencing them - -here is what we did to help my father - -1- we did use medication for anxiety - at this time we were using valium to help him relax (later on was on clonazepam for muscle spasms but it also helped with anxiety) 2) we put a clock and a calendar on the wall up so he could see it. 3) since we experienced most of these episodes between sleep and awake we would give my dad a few minutes to "wake up" before approaching him and we would say our name, where he is at like "you are at home, in your living room chair and are safe" and what day and what time it was. Don't know if this will help for you but I hope it does a little.

[jimandsharynp in reply to Mira1]

I can relate to your thoughts. I'm going through this with a wife who has PSP. This after 23 years of happy married life. Unfortunately my first wife passed on after 31 years with Cruetzfelt-Jacob disease (sister disease of Mad Cow disease). It had many of the attributes of PSP but progression was months not years to the end. I know it is hard to recall the happy days as we pass through the disease but later you will heal and be able to recall some of those times. You will always remember the rough struggle and that will "shade" your memory probably as it did mine. With strength we can all survive and there will be happiness for us all after the trials. Of that I am certain having been this way before. Best wishes.....

Jim P

[FranR]

hi. as everyone said i know exactly how you feel - the picture you paint of your step dad could be my dad to a tee - except he has just been living with this for 3 years...he has deteriorated so quickly. like Peter, my dad, Alan, goes to a centre once a week but I know he is embarrassed too - he is the only one who cannot communicate in any shape or form whatsoever, and has to be fed by the staff. I feel so pathetic on his behalf, knowing what a fun-loving, whole person he used to be. What a god-awful disease. keep strong - who knows why nature throws this on the still young (60's is young nowadays isnt it!)and perfectly healthy. suppose it's a good job we don't know what nature has in store for us....best wishes to all going through this nightmare

fran x

[john_z]

Hi,emazros.I completely understand you,unfortunately.I am not feeling strong,instead i feel powerless in front of this disease,everything we do seems to be very little.But we have no other choice,we have to keep trying for the people that we love.I am trying to keep my dad "busy" most of the day,i found some exercises for parkinson's patients from internet and we have some practice everyday.Besides,last month my father started physiotherapy and it seems to get some help in his mobility.We have also bought an exercise bike and he spends much time on it.It's a recumbent one and it's very convenient for a psp patient.Lately,we have discovered a new hobby for my dad,it's the classic game "find the difference",where you try to find the differences between two ostensibly same pictures.He likes it and he is willing to deal with it.Generally,i am trying to find ways for keeping his body and his mind active.I wish you the best,John.

[emazros]

thankyou all, its so cruel this disease its so hard for us the family&friends i cant imagine how the sufferer feels.

sending all my thoughts to you all x