PSP Association

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First time of posting

I've read this site for a some time now and have found it very helpful knowing there are many people going through similar things to us. My husband was diagnosed with PSP in October 2010 but showed symptoms at least three years before. I've picked up many tips from you all, e.g. we converted our garage into a small bedroom with wet room to prepare for the day C could no longer get into the bath. The day came 2 weeks after the conversion was completed. Recently someone said don't presume all symptoms are PSP. C gets up many times in the night to go to the toilet, so I have to get up as well. I presumed this was another symptom of PSP but after reading this, took him to the doctors. Hospital tests showed an enlarged prostate. He has further tests but I'm so pleased I took the advice I saw here. I know we will still have disturbed nights even if this is sorted but am hoping there will be an improvement on the average of 90 minutes between "get ups".

C takes everything in his stride (or should I say shuffle) and is very positive. He still plays bridge and we try and go out every day. He falls more frequently now but amazingly hasn't caused serious damage to himself, although lots of damage to furniture. He has fallen through the greenhouse and in the pond. 3 weeks ago he dived head first down the stairs at 1 a.m. He'd managed to get out of bed himself without me waking (I had already been out 3 times) and was picking a "bit" off the carpet at the top of the stairs. I am very pleased I watch Casualty and CSI as I didn't panic when I saw him lying face down at the bottom of the stairs with blood running across the wooden floor. 11 hours in A&E and 5 stitches later we were back home. I've now rigged up an alarm system on the bedroom door...I've tied a frog to the door handle that croaks when it moves.....no, not a real one.

29 Replies

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YOU SOUND AN AMAZING HELPER AND WIFE

LOVE SHA

yes u r amazing and a great person to have on the blgo site

lol JIll

we have online parties too

do you belong to a lcoal group?

I'm not amazing at 5 a.m.

When I first joined the PSP association, I was told my nearest group was 25 miles away. I intended going to the meeting but was told it had been cancelled. The next one was cancelled as well and I haven't heard of any others. I'm in West Kent if anyone knows of a group in the area.

hi no one is amazing a5 5 am

i was having probelsm gettign to sleep and now take trazadone at night

it usually helps but not if i am stressse dor worried about htings

lol JIll

Thanks for this Jill. I've made a note of this and will speak to the GP if things don't improve once the prostate is sorted. I've read your blogs with interest as I think you were diagnosed about the same time as my husband. We were both very sorry to hear of your additional problem and hope with the further treatment, you remain clear. You are in our thoughts and prayers.

Nana B . I have been in touch with a continence nurse . My husband isn't incontminemt but the sameness yourselves you get very tired when you need to get up and down all night . She gave us some sheaths and night bags . they work a treat and has made things so much eastern for BOTH of us

pele keep telling how marvellous I am with my husband . We have been loving and caring for each other for Fifty five and I am not going to stop now he needs me the most . Although I do have my moments of course I AM HUMAN I THINK LOL NOT SO SURE THESE DAYS LOL

55 years is a long time. We've only reached 40. Someone asked me the other day if I still felt like a wife. I thought what a strange question. He may have PSP but he is still the same man. The other day he said something to me but I couldn't understand. It took ages for me to work out it was, "I love you. Thank you for everything you do for me". When I asked him if this is what he was trying to say, he put both thumbs up and did his funny little humming laugh. We vowed for better and for worse at our wedding. When we said those words we couldn't imagine what the "worse" would be but as he said when he was diagnosed, we still have time together so lets make the most of every day.

You were right to think that was a strange question. You're a shining example of not defining your husband by his disease. He's a human being who is also your husband, who happens to be ill. What a refreshing post

Thanks for this Judy. I've read all your posts with interest. You've been a carer yourself for years so hope now that you have good support to help you when you need it. My husband went to our local hospice day centre today for the first time and said he had a good time. I took the opportunity to meet up with friends but most Fridays I'll take the time to be with my 96 year old dad who still lives alone and is depressed as I can't take him out anymore......I don't think double wheelchairs exist.

Take care and keep posting.

You're one incredible, inspirational lady! And you tend to your 96 year old Father?? Even tho it's Friday's, that is still so much on your plate. Geesh!

jillannf6 is right, a sleeping tablet will help him get some sleep and allow you not to worry at night. I think it was seroquel 25mg. But you have to give the tablet just before bedtime otherwise they just fall asleep in the chair and you will never get them to bed. It also sounds like he needs assistance getting around if he is falling alot, but obviously there is a danger he could knock you down too when falling. Maybe a wheeled walker or wheel chair may help???

Nanna, There are devices that you can put under your bottom sheet or anywhere else (chair) that make an alarm sound when the person moves off that area like getting out of bed. Sometimes you may need to know BEFORE he gets to the door as he could fall getting there. Just a thought. My wife who has PSP went through a stage of having to get up every night in the middle of the night but since we started thickening her drinks (due to swallowing issues) that seems to have slacked off.

Jimbo

Hi NannaB,

I also learned a lot from this site in the the last year or so. My hubby was up several times every night to use the urinal, and I had to get him up as he couldn't go sitting down. So many great tips came in from others here and I used them all until we finally had to give in to night time disposable briefs as it was getting too dangerous to get him up. This has provided better sleep for the most part, but even with a sleeping tablet he was up last night struggling to get out of bed, not quite asleep and not really awake. I had many nights where I was like you, stopping him before he made it to stairs when he could walk better. I didn't have a frog, though! Too bad, he would have laughed about that. Good luck on finding a device that alerts you to his movement. I think I might still need to get something, other times I wonder how much longer he will be able to get up on his own at all as he is becoming quite rigid.

Hang in there, and bless you both. Sorry to hear you and your husband are going through this also.

Rosemarie

Hello Rosemarie

It is becoming more difficult for C to get out of bed as well. We've recently bought 2 single 3 ft beds and pushed them together so I don't feel every movement; that's how he got up without me knowing. I ordered blocks to make the bed higher but they didn't fit but have decided not to get any more as he will be able to get up easier with them.

Cs worse fear is becoming incontinent. He has had a couple of accidents during the day and wears a pad if we are going on a long journey but wants to get up and go at night.

You hang on in there as well and many blessings to you both.

NannaB

Hi Nanna B - My father had terrible nights just about every night for a long time. Our doctor put dad on amitriptylne and it was much help.

Thanks for all your helpful suggestions. I should have started blogging ages ago instead of just reading what you all said. I always felt as if I was eaves dropping on private conversations. Today C told me he would try the day centre at the local hospice to give me a break. We went to see the GP who is setting things in motion. I know C doesn't really want to go as he has never liked joining clubs etc but just before he was diagnosed he started to learn to play bridge. He also like cribbage so if folk are willing to play cards with him he'll be fine. He still plays bridge twice week. The doctor has also given him Temazepam as I showed him the diary I keep of nightly "get ups". I'll let you know how it goes. We had a battery fitted to his wheelchair today so no more pushing 16 stone around. Watch out pedestrians...we can get up to 4 miles an hour now.

Hi NannaB,

We have gone through the night difficulties. My husband would get up to go to the loo and even though the bathroom and the stairs are in opposite directions, he would manage to fall down the stairs. He now has temazepan at night and this has made such a difference. No more night wanderings.

This week he started going to the local day hospice for the next 12 weeks. The staff have been very good and are so positive. They have had other patients with psp and certainly understand the condition. It is such a relief not to have to explain psp to health care staff. I feel very confident leaving him there and it gives me a few hours break in the middle of the week. I hope your husband benefits from the day hospice

Best wishes and keep blogging.

Peter3.

Hello Peter 3

I'm so pleased you can get a break knowing your husband is safe. What happens after 12 weeks? Do they reassess or does the help stop?

C took the Temazipam for the first time last night and it was a success. He only woke 3 times but there was 4 hours between 2 getups. We stayed in bed until 8.30 am. Amazing!

NannaB

Hi Peter3,

Just thought I'd let you know my husband had his first session at the hospice day centre today and said he liked it and will go back next week. He also takes temazipam at night now which gives us about a 4 hour sleep before he wakes. Although we have converted our garage to a wet room and a small bedroom, we are getting a chair lift installed so I don't have to run downstairs every time he wakes. I've now renamed the new bedroom my music room where I can practice my ukulele...a Christmas present from my husband via my son.

Best wishes.

NannaB

He takes a Sinemet Cr to go to bed . Use to have a 10mg Amitriptyline but thought it was making him slower in the morning s . Might try it again . Although?gh once the coughing has eased he goes to sleep for a few hours .

Hello Cabbagecottage,

My husband was taking Sinemet Cr as well. The first time he took it, he slept through the night. The second night he was up 10 times! Then he settled to about 6 times a night. He took Temazipan for the first time last night and we managed 4 hours of sleep straight off. It's a very low dose and he is quite a heavy man so the GP said it would give him about 4 hours. He seems more awake this morning than he ususally does so the extra sleep must have done him good as well. Long may it last. I'm pleased you manage to get a few hours.

NannaB

Hi NannaB,

After the 12 weeks we can stay in touch with the hospice and as and when they will give further support either in our home or in the hospice. We can also use their 24 hour 7/7 help line.

My husband has been experiencing quite severe shoulder/arm pain, after x-rays and MRI scan nothing could be found. It's thought it is psp that is causing him the pain. The hospice changed his analgesia regime and so far so good, he at last is almost pain free.

My husband has also asked them to go through some forward planning with him regarding what he wants as his supra nuclear palsy progresses.

I hope C's sleep pattern continues to improve.

Peter3.

Hi Peter3

I hope your husband is soon totally pain free. The other symptoms are bad enough without pain as well. So far C hasn't had pain, apart from after falls.

NannaB

hi, i want to share with you what i do for my father....he wakes up a lot of times to go bathroom, and its impossible to me hear when he is moving or walking, then how yours experiences are similars like mine, let me tell you that when i found my father with his blooded face for falling in this very moment y say....STOP;: y bought a wieless door bell and i gave him remote control and i put the sound box in my room, and he when wants to wake up, first he pushs door bell control and i can hear him....try it.....its to sad see him hurts i know what you say..... i beg you be strong

Hi Marusela. We do have a remote door bell which he uses during the day if I'm not in the room and he needs me. I don't know why, but he doesn't use it at night. I suppose because I'm beside him and thought I'd wake up. It's a brilliant idea though so thank you; I'll take it to bed with us tonight. Another use for the bell....our 6 and 3 year old grandsons use it to play hide and seek. They hide the bell, then ring it and I have to find it. Then I hide it and they seek. It keeps them amused for ages.

NannaB x

Hi Marusla, I put the bell control on my husband's side of the bed last night and the sound box my side. It worked. He rang it before attempting to get out of bed. Thanks for the suggestion. I think I'll change to ring tone though; Beethoven's Fur Elise is a bit too much at 3 a.m. A short ding dong will do.

yeahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh !!!! a lot of kisses you know how make me feel its help you, ( im from spain beg you pardon for my english ) remember you are not alone...here we can share a lot of help things GOOD DAY and congratulations for try it

Your English is very good. I'm sorry to say I don't speak any Spanish.

also helps a ruber duck for all people that needs hear them

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