PSP Association
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Best Medicine

Hi, S is on respite again this week. Was booked in case the Paignton home didn't come off, but they didn't want to cancel it, as they knew I needed the extra break.

I have done a real grown up thing tonight, been to the cinema with my sister and some of her friends. The added bonus, it has got to be the funniest film I have seen in years, if ever. "Bridget Jones's Baby". I don't normally do comedy, but I haven't laughed out aloud for a very long time. I feel wonderful, years younger and totally relaxed. Not even bothered about being in the house by myself. I realise this film might not be everyone's cup of tea, but it does prove, I am still alive, I can still find things funny, laugh and enjoy myself. I thoroughly recommend it!!!

Lots of love

Heady

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Great! - Smiling.

Kevin

xx

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😊😊😊

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Heady good you went out and had some time for yourself and was able to have a good laugh, laughing makes you feel better. Being I. The house by yourself is ok, you have your dog, to keep you safe. Hope S enjoys his respite, I am sure they like to get away from him as well? Sending you a big hug Yvonne xxxxx

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Should of said I am sure they like to get ways from us as well, tired but I can't sleep to much going on in my head xxxxx

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Don't worry I understood the first time. I am in that place, where I am totally exhausted, but I can't get my brain to switch off, so no sleep. I did the time proven way last night, couple of glasses of wine and a sleeping pill! Did wake several times, wondering what was different and where was I, but always managed to go back to sleep.

Lots of love

Heady

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Hi Heady

Glad to hear you laughed and enjoyed yourself for a little while, you need a break

Lots of love

Debbie xxxx

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i agree d

lol jill

xxxxx

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Heady, So happy you are having a good evening. Wish I had someone to go with, unfortunately I don't. D is coming home Friday but since I did such a good job on my back, they are going to send him home, which makes me happy. Hopefully they send him with his clothes and a list of the meds he is on. Pretty sure I have at least 90% of them. Not being able to drive, really stinks.

Lots of love back back,

Audrey

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Hi Audrey, did you manage to get extra help sorted out for when D comes home. I do hope so. So sorry you are having such a rotten time. It's bad enough having to deal with PSP but with all the other things you are both going through it must be so hard (understatement).

Thinking and praying for you both and hopeing things get easier for you soon.

💐

X

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NannaB, trying to get extra help from the VA, they are going to let me know how much more they will give me. Hoping it is more than the 6 hours they are giving me now, Also got a call fro someone, don't remember who and she will be coming next week to see how we are and try to get us more help. I am calling whoever I can think of. Having a compression fracture in my spine really makes everything more difficult. Thank you for the prayers and hoping things get easier as well.

<3

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Take care of that back Audrey, have had back problems in the past and was totally on apricots for a couple of weeks, couldn't even help myself never mind anyone else. Hope you get that extra support asap.

Love and back massage

Kate xx

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Glad to hear your back is improving! Take care of yourself.

Lots of love

Heady

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Heady, Back not improving yet, in pain most of the day. It hurts even now. Can't sit for to long and along with the no bending, no lifting anything over 5 pounds, no twisting whatever that means, and the no driving puts the icing on the cake I could cry, he will be home Friday. He really doesn't know what I did to myself.

Lots of love back,

Audrey

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We just got a nurse come out and change B's cathater...through a home health agency...I had to find them my self but my dr. did order one which I do greatly appreciate. The nurse took one good look at Bruce and asked who our social worker was.....I said we did not have one though we had one when he was 1st daiignosed ....so she ordered one up ....I think.....So you might go through DHS and see if they can't help you...Or better yet your dr prescribe home health care....you have to have some one Audrey.....call dr. and have him prescribe home health care either for you or for D or both.....I think I'm being redundant just want to help you!

Take care

AVB

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TY abirke. He will be getting PT, OT and a nurse twice a week. The VA just upped the amount of hours they are giving me for an aide to 14 hours a week, 2 hours a day until the end of Dec. As for me I ran out of dog food and drove to the store to get a little bag of food for them until someone can lift what I am not supposed to. Now my back is hurting since I thought wearing my brace and trying to drive would not work. Needless to say it now hurts, Oh well,, they had to eat.

Audrey

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Damn...im sorry ....everyone needs something I'm sorry you had to do the dog food on your own....lesson learned.....no more driving/lifting/twisting and turning!!!!

I am glad your husband is getting a little more nursing care though 2 hours a day still leaves 22 hours of needs not met or sacrificing your health for his.....Try and get more help.....at least for 2 weeks.....I wonder if you would do well with PT?

(gentle hug) ;)

AVB

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abirke, don't think PT would work for me, have to be kept rigid with the brace, which is not the most comfortable thing in the world. I am in pain now since I forgot to take my pain pills this morning. D is home and that makes me happy but he was up a few times last night to go potty and I am a very light sleeper. Going to bed and lie down which alleviates some of the pain. Need to rest it and me. TY for the gentle hug :).

Audrey

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You would be surprised what PT's might know for your condition....It's worth a shot to ask

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True, I will ask the PT on Monday. He is coming to eval Don.

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I went by myself a couple of months ago and felt so lonely that R was not sitting with me . I left half way through. I had no idea this would affect me in such a way. It left me so depressed. It hit me how lonely I was. Never had time to think about it before.

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Noell121, you have no idea how lonely I have been with D in rehab for 4 weeks. I wake up during the night calling his name and of course he is not in his bed next to me. We have been married 57 years an this is the longest time we have not been together. He is coming home Friday, thank goodness.

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I am so glad D is coming home. D will do so much better when he is home again too. Ron was in hospital when he broke his hip and I did not feel like going home to an empty house. Like you I would wake up and he was not there. I would put the tv on for the sound so felt like someone was in the house. God bless you both and enjoy each others company. Hugs.

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Noella, you do understand TY. I changed some of the meds they had him on and a nurse came today and his BP was fine.

Hugs back

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I sit there waiting for him to need me ,,,,get miffed when he does get pissed when he falls.....and cry at the thought of losing him.....

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I think that sums up all our feelings.

Lots of love

Heady

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abirke you got it right,

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Oh how lovely for you!! Fantastic ... So glad you had a wonderful time! Laughing really does give you a boost! Xxx

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Laughing really is good medicine.

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I've always said laughter is the best medicine. I definitely want to see that film as my friend's grandson is in it. He is 6 and played Bridget's nephew, the twin. My friend was so thrilled when he presented her with a photo of him with "Uncle Colin", Colin Firth. She had told him she loves Colin Firth and could he get a picture so he told Colin that grandma loves him.

I'm so pleased you are enjoying your free time and hope you manage to do lots more fun, grownup things...or even not so grown up things. I came down the slide in the recreation ground last week and didn't have any children with me. It wasn't very elegant getting up afterwards though as it finishes at ground level so you can't fall off the end any more. Colin was with me and even managed a noise which is his way of laughing. That was my laughter fix for that day.

Have fun, relax and enjoy.

X

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i agree b#

oljill

xxxxx

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Colin is has lovely has ever in it! I wasn't aware of twins, but there was a lovely little boy in a taxi scene, which was probably him.

Love the thought of you coming down the slide. I am impressed, not sure I would fit on one now, certainly get vertigo at the top!!!

Lots of love

Heady

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Yike with my vertigo it would never work.

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Ha ha! It wasn't very high, health and safety etc.

X

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Rafferty did a lot of filming but lots of scenes are cut before they are finished. They let him keep all the different costumes he wore, all designer clothes. I think I'll have to wait until it comes out on DVD but they get them out so quickly now so shouldn't have to wait too long. One day in the school holidays my friend asked him if he wanted to spend a day with her and he replied, "Sorry, I can't that day, I'm working". Not bad for a 6 year old.

The slide wasn't very high.

X

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wow! very cool 6-year-old indeed!

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NannaB, Did ya'll just go to the playground or were you at another event.... I took B to a skate park to watch the boys on their skateboards and bikes doing tricks....It was nice .....was hoping B would pop a wheelie in his new chair.....oh welll~

AVB

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No, not a special event. The park is only a 3 minute walk away, so I take him quite a lot just to get out.

The skate park sounds good. Wheelchair wheelies sounds fun.

X

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Yah my son showed dad "how to pop a wheelie on your new ride!" so far, trying to stay in a straight and upright position is a good goal too hahahaha...

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😆X

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Wonderful. I want to see that film for a laugh !

I envy you, having been up all night with Chris having diarrhea. Oh to not be "on alert " all the time.

Enjoy.

love, Jean x

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Oh Jean, how awful. Only just read your post. I hope Chris is OK now and you didn't get it as well.

X

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i agree

#lol jill

xxxx

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Bless you heady!! Wonderful to hear! Laughter is the best medicine!! Enjoy every moment of your respite you deserve it!! I'll await the film on DVDs x

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I can't wait for the DVD to come out, need to see it again, to hear the bits the laughter of the audience drowned out!

Lots of love

Heady

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Great Heady ! I am so glad you managed to relax, get away from it all for a while and .... laugh.

Do you remember the old Charlie Chaplin song, `Smile` ? Well I try to do that every day, that song is my inspiration (listen to the words). If I can make P smile - or even laugh - then I feel I`ve had a good day. It works.

xx

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Good for you! (:

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Ooooh ,lucky girl ! :-)

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I missed this post Heady, I am glad you had a comedic respite.....Nothing like a good laugh to release all sorts of stuff, good and bad from your body....

AVB

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