Have you counted your PSP BLESSINGS?

[jimandsharynp]

In a past posting I mentioned the blessings of PSP or GIFTS of PSP. I started a list of symptoms and things that my lovely wife Sharyn did NOT have to endure but which some PSP patients DO endure. I challenge you to go through this list and if you find a symptom you don't have, enjoy the gift. Sharyn didn't have.........

No excess saliva build up, No odd laughing bouts, No apathy, No really bad eye problems, just minor ones, No major swallowing issues until the last month, No bursts of anger or striking out, No dropped forward or backward head, No really bad falls with medical treatment needed, No pneumonia, No UTI bouts with required antibiotics, No diarrhea just constipation, No bed sores, No buildup of saliva so that suction was required, No demanding or acting out, No leg cramps or Restless Leg Syndrome, No tremors, No sleepless nights, No obsessive picking at or scratching parts of the body, No psychiatric disturbances, No constant or bad pain, No hospitalizations, No refusal to cooperate, No drooling, No Botox treatments needed……. Find your gifts in this list.

[cabbagecottage]

What about when you cannot find any Jim . At the moment my husband has all of them and many others . He has Parkinson's , or so they say ..

I am not a pessimist , but realalist .

I just look back at all the good years we have both had . I am sure you are doing the same Jim . It does certainly test you though doesn't it .

Great to see you are still on olved with all the others and I am sure you will be a big help to many others in the future , after all you know what it's been all about and have lots of tips .

[jimandsharynp in reply to cabbagecottage]

Cabbagecottage, Are you saying your husband has all the items on the list I posted? I find that remarkable and how difficult for you and he. You indicated he has "many others" I'm interested in what those are if you would share them with us. It's ok to be a realist and part of that is accepting the things that PSP hasn't thrown your way and at the same time acknowledging the things it has. This is a terrible disease we have been given to deal with and if we let it PSP will define us. I say don't let PSP define who you are. That applies to caregiver and patient alike. Jimbo

[cabbagecottage in reply to jimandsharynp]

Hello again Jim . maybe I exaggerated in my last response But my husband has and still having those items other than going into hospital for with infection . Although at the moment he is so bad I am concerned he might be going that way .

Since changing from The Neupro patch to Roprinirole he has worsened quite fast Thrashing jerking about in his chair and bed . I have today taped lagging around the bed bars to save him if he knocks against it which he will . His head is so jammed for the first time ever he said he has had enough . Aman who has never ever complained about him self very agitated and confuses . We that is the doctors included don't think he has dementia he is still quick witted and doesn't show any other signs . Of course it could be small strokes but it doesn't even seem to be that .

I don't want him hospital to further co.nfuse him he is so sensitive to meds and in wouldn't have the same control of them . On top of that I know he would be prone to skin in infection . I have kept ip pErfect .

Yes it is a very hard time for both of us . I want to carry on looking after , have been doing so in one way or an other for 56 years . Whether I will be able to continue remains to be seen . didn't think I would last this long LOL My theme time is " always look on the bright side of life dadadadadadadadada..

[jimandsharynp in reply to cabbagecottage]

I can sense and read that you've been through tremendous trials with PSP. Being sensitive to meds just compounds things with a dementia disease like PSP. You are right to keep him home if you can. Hospitals just don't give the same care and then he would be exposed to who-knows-what in there. I find it amazing that the part of the brain (thinking) basically stays find while the rest of the body is greatly effected. Sharyn was cognitive and understood things until the last few hours then she didn't. Stay strong for him as this terrible struggle continues. I know it's not easy and many of us on this site have or are now having similar issues. Jimbo

[cabbagecottage in reply to jimandsharynp]

He Jim I have , it's only others in the same position that can possibly comprehend . We don't go complaining or moan to others it doesn't help is one bit . Friends and family care they might say "iTS TERRIBLE FOR YOU " well it is for both of us but those sorts of comments can drag me down .

Part of the stress is pondering if you are doing the right things even though you do your best . an all the pondering doesn't make a scrap of difference . It's the difference in accepting but fighting at the same time .

[loppylugs5]

Hi Jim I watched your video and glad I too have so many photos,I count it a blessing my husband with PSP can still eat normal food and walk short distances,and at 79 we cannot complain.He has become very apathetic which makes the limitations of PSP easier to accept,he does get frustrated at times but without the apathy it would be worse,if that makes sense?I feel so sorry for the people who get this cruel disease so much younger than my husband Glad you have a family to share your memories.All the best.

[Heady in reply to loppylugs5]

Hi, know what you mean about the apathy. I always say, apathy is my enemy, but S's friend! Very hard to cope with though!

Lots of love

Heady

[jimandsharynp in reply to loppylugs5]

Loppylugs, I can relate as I turn the BIG 80 this October. lol I think keeping a list of symptoms and somehow noting which your loved one has/had is a good idea. You can share it with family and friends and if asked you are ready to answer questions. Thanks for your kind comments. I love this site and the people on it. My motive in life now is to help as many people as I can. Jimbo

[Hidden]

But Jim, we have a lot of those symptoms and more, which goes to emphaisise how awful this is. Our blessing is each other. Just been to hospice for first time yesterday.

[jimandsharynp in reply to Hidden]

Jmbb, Just start a list of symptoms that your loved one doesn't have. It's a great consolation to know PSP could be a lot worse. Sometimes your loved one may have the symptom but not to the extreme as others might. Sound optimistic? Yes, I prefer to see the glass half full rather than half empty. Hang in there as PSP is a bumpy ride and we are here for you to help fill in the pot holes and smooth out the road, and repair the flat tires when you get one. Jimbo

[wifemo]

Hi Jim -

Like Sharyn, Tony did not have quite a few of those on your list - in fact, being on this site makes me realise how lucky we were compared to some.

I think the apathy was the worst, especially as Tony had been such a creative person and must have been so frustrated at times.

Also, he felt the heat, so I'm pleased that he is no longer suffering the hot summer days and bright light.

Lovely to see Sharyn enjoying paddling in the sea. She was lucky to have you and such a handsome family!

Mo

[jimandsharynp in reply to wifemo]

Mo, I think that the attitude and personality of Sharyn and I helped a lot in dealing with PSP. Also our faith system is strong and that helped a bunch. I remember when my first wife passed and I attended a grief counseling session I asked the facilitator "How do people who don't have a faith system survive the loss?". He replied "Often they don't. They end up with a lasting anger or long lasting depression, or worse".

[zjillian]

Thank you...It really, in some strange, way helped.

Jill

[cabbagecottage]

Do you think the carers of Parkinson's sufferers brings out the best in you I daresay not for everybody but who knows what all relationships are like before that arises . Then It must be dreadful to be put in that position ,

It certainly takes some understanding and it doesn't come with a rule book or something you can practice before hand . Probably why we are all here doing our best to help others at the same time . I think I could write a book of ways and means of coping with difficulties that arise . For instance no more sore bottom or broken skin while cleansing , I now only use Kleenex tissue with Vaseline . Problem solved . I think I keep the paper mills going . When emptying into the toilet I keep a bottle fill with ,water containing washing machine liquid . no paper blocked toilet all slips away . Useful in any instance . O I also always line the pan first .

[jimandsharynp in reply to cabbagecottage]

I think a lot depends on the "tools" you have going into the PSP battle. It depends on the love you have and how intense it is. Also depends on how much of a fighter you are. Also if you have a servant heart. Add in the relationship you have with/for the other person. So probably the perfect person is one who loves a lot, is a fighter not willing to give ground to PSP, had a strong relationship going into PSP, and has an attitude "I'll not let PSP kick my a_ _ I'll show that it won't define ME".

Thanks for sharing your tips. Often it's the simplest solutions that elude us. Even beating a small challenge is a victory in our column and not in PSP's column. I found that it helped to remind myself daily that Sharyn was doing her very best living with PSP so I had to match that with my best. Jimbo

[AmandaF]

Keep posting, Jim. I don't share your faith but you have a gift of looking at things differently, We need you on this site. I hope you gain as much comfort as you give.

Lots of love, Amanda.

[jimandsharynp in reply to AmandaF]

Amanda, In scripture it says that we are all given spiritual gifts. One of those gifts is the gift of giving. I think that's my gift so I'm going to stay on this site and help as many people as I can. I'm actually on four PSP related internet sites and contributing to all. In addition I started a PSP support group here in Florida in January. Barely off the ground (four meetings) before Sharyn's death. I'll keep it going. Last meeting I had three people and if I had only one I would keep it going. I'm not giving any ground to PSP. It didn't win the struggle when Sharyn passed from the scene it just made me fight PSP harder. Jimbo

[wifemo in reply to jimandsharynp]

Well done, Jim - support groups seem to help here in the UK.

As with Amanda, I don't quite have your faith, but rather feel that all who have gone before are my guardian angels who guide me. For instance, to do or not do something which turns out to have been the best course of action. Similar but different, and with the sure knowledge that we will meet again one day.

Just been to a funeral in Essex today (Jim was best man at our wedding), got home to a tearful message that a friend's husband had died suddenly - I had been planning to meet up with them on a trip in the camper next week but something had stopped me booking the sites too early!

Mo

[jimandsharynp in reply to wifemo]

Mo, the number of friends and relatives lost at my age often amazes me. Will you still go camping? You need to go if you can. It would be wonderful for you. Jimbo sends HUGS!

[wifemo in reply to jimandsharynp]

Hugs returned, Jim.

Having the clutch worked on at the moment - will find out tomorrow whether the trip is on or off.

By the way, it's taken me 18 months to really get going again.

Mo

[MOMBCD1]

has anyone with psp not been able to talk I have psp and am not able to get enough air to push the sound out

[jimandsharynp in reply to MOMBCD1]

Yes, My wife had the same problem. The only solution is to do exercises but you have to be willing to put in the time in order for them to work. When I would ask my wife to shout the sound that came out was not what you would consider a shout. It was louder but not what a normal person would put out if asked to shout. There is a course called the Lee Silverman Voice Treatment (LSVT for short). We bought the DVD for the course but my wife gave it up after a few days and wasn't interested in doing it very day. The more you use your voice the longer it will be with you. My wife eventually got to the point she could only say one or two words at a time and that wasn't often. Since PSP affects the throat, swallowing, voice, tongue (yes tongue) which are all things used for speech it follows that speech problems would exist. If you are the type of person who can get in a routine and stick to it then the LSVT course will help you. Unfortunately most PSP patients eventually get so they can't speak if they live long enough. This is a terrible disease that takes, and takes, and takes, until it takes your life. Stay strong and enjoy all you can while you can. Jimbo