PSP Association
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New here. Husband diagnosed first with PD now PSP

Hi, this is my third attempt to post. Just lost my (LONG) intro for the second time . Don't know what I am doing wrong. So this time I am keeping it short. Husband, now 77 diagnosed with PD in 2015 then changed to PSP end of 2017. However think he had it as early as 2014, when he started with a cough, got diagnosed with slight copd and sleep apnea. then tremors in hand started and he started shuffling when walking stooped over. all signs pointed to PD but Dr changed it to PSP after battery of tests done for his dizziness. Neurologist saw the Hummingbird shape in the MRI Also PD meds din't help. He can take care of his needs (carefully). Still drives short distances, does not exercise except for 20 mins on reclining bike. went to PT and walked and did great there but got home and went back to shuffling and taking 15 steps to sit down. I have stopped nagging because he ignores me. Sleeps or sits in recliner with eyes closed most of the day. Eats candy all day , coughs and chokes , but doesn't cough at all at night or when he goes out. Lots of phlegm and saliva, sometimes drools. Has vacant stare. Very slow movements eg reaching for something. Bad balance but has only had 3 falls and do not think related to psp, more like low blood sugar signs/symptoms . Doesn't want to talk. sometimes takes a while to reply, if he even replies. If I am happening to be looking at him he will do the thumbs up/down. Has trouble expressing himself sometimes. Neuro says he has a slight delay in vertical gaze. Well I am going to stop here before I write more and lose it. Very grateful to this group. Have been lurking and reading for a while.

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Daffodil it must be catching!! I just got booted off the site. Welcome to the site nobody wants to join. There are a lot of very good and kind people on here however. I don't know how I would have survived without them. My husband died just over a year ago. I know what you are going through as do so many others. It is so hard to see your loved one die before you and not be able to do anything, apart from try to keep them comfortable.

Feel free to ask questions when you want. Hopefully someone will answer!! Hinting there! 😁.

Take care of yourself.

Marie x

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thanks Marie. I have been reading posts for quite a while now. I get a real guilt trip when I read what many are going through and we aren't there yet but sometimes I get so depressed. If I am like this now, how am I going to cope? . I think it s because he doesn't want to help himself with exercise etc. He sometimes acts like he is proud to have this. Sometimes when he coughs a little he will make some good exaggerated sound effects. If I make suggestions to help him with coughing, sitting down and standing up, walking etc. he ignores me most of the time and he has got nasty a couple of times. I am so grateful to find you guys

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Well apathy is part of PSP. So that may explain his lack of interest in doing things? He may also be feeling really tired, another symptom. As for acting proud to have it...well I don't think that's how he really feels. However, it may be his way of coping? Have you got help? You certainly need it and best to organise now for the future. All the equipment I am talking about now. Have you got an OT? If not you need one to advise you what you will need.

Daffodil (love the name) you have to remind yourself that he is not trying to annoy or upset you. It is all part of this horrible disease. Including sometimes being nasty. Thankfully my husband didn't go like that but so many have had that problem. Just remind yourself of the man you fell in love with. He is still inside that body. He knows the words he wants to say but when he tries he can't say those words. I can't imagine anything worse to be honest.

Take care of yourself and we are here for you.

Marie x

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Yes deep down I know that. No I haven't looked into help yet as he is still able to take care of himself. was thinking of getting hold of the hospice people and see if they want to put him/us on their list yet so we are in the system beforehand. I have just finished converting a bedroom into a large bathroom with walk in shower which will be wheelchair accessible and putting up grab bars. Has a walker he got after triple by pass but will probably get the U walker. I do want to find something to help me get him up off the floor. the few times he has fallen, it's hard to gt him up. he is like a beached whale, can't move or do anything to help get up thanks xxxx

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We are registered with Homeline in Swindon .When Valerie falls we call them first - pendant round the neck or machine by the phone. They normally arrive within 10-30 mins and assess her for damage before either lifting her or calling a paramedic.

I think this service is available in other parts of the country.

When Valerie was more mobile the OT got us an inflatable cushion/seat which I could inflate under her. I think it was called a Camel !!

Talk to your OT

Bryan

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We had a camel. It helped until he was no longer able to transfer into bed.

x

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Daffodil you are not the only one who would like something to help lift a lived one. Apart from a hoist I can't think of anything. That's not much use when he falls however. My husband fell so many times. He was linked to an alarm system so if he fell it went off. I just told them what had happened and they sent an Ambulance. After checking for broken bones he was then lifted into his recliner. He never could understand why I couldn't lift him off the floor. I had to explain each time.

Take care, and glad you have started to get things sorted.

Marie x

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Hi Daffodil, I lost my husband to CBD over 18 months ago. Your portrayal of your husband mimics so much of mine! Like yours, he seemed insular and said little, did not exercise unless pushed and ate sneeky lollies I found hidden with his socks!

He also had diabetes several years before any other symptoms, as well as shortness of breath, asthma, high blood pressure and high cholesterol and very low heart rate.

This was treated by a pacemaker after he collapsed while we were out. I did not call an ambulance or take him to a surgery at the time as we were remote from a main town. I think now that I nearly lost him then! Further along when the heart trouble and breathing were more troublesome he was sent to another heart specialist - who suggested the problem was Parkinson's!! not quite his field of expertise, but GP had missed the signs!

He always had a great deal to say before the disease, but latterly spoke little as a general rule but would be voluble if I had a visitor or if he got angry; he rarely spoke about his feelings.

This was him for so many years that it is difficult to pick just when CBD began to take over.

My suggestion to you if you can is to persuade him to talk about how he is feeling, tell you how it affects him mentally as well as physically.

I was only able to talk to him in the last few months and it was interesting. I began to understand why he did things the way he was doing, and to appreciate the turmoil inside his brain.

He could not keep track of a task. He could not multitask. He lost his anger mid sentence one day and was not cross again!

He explained why he stopped walking partway along the hall - he had to put his actions into small bites, as he could not remember a long string.

He had bad back spasms while we were traveling and only 1 Physio was able to ease them. She was treating it as nerve pain, not muscle pain which may mean a more intense treatment.

So yes, I see a number of similarities in our 2 men! If I can help you with your journey let me know!

Hugs

Jen xxx

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thanks Jen xx

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Hi Daffodil,

The emotional impact of all that sounds so hard on you! I don't have anything helpful to offer other than, I hope you get good input from those who've already dealt with this!

Lost

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Welcome Daffodil

Enjoyed your intro,Your story unfortunately is seems to a common one but with a few different twist,it wouldn't be PSP if it were predictable.We are in the same boat even if we are not all in at the same time.

Please do think about his still driving,my husband could not understand when the doctor had his license removed,I on the other hand was very relived.

Dee in BC

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Welcome, Daffodil.

You seem to be managing well in the circumstances.

Its a scary disease. My husband died in October. I think what I found most hard was the personality changes. My husband was never aggressive but he lost his energy and enthusiasm which felt weird.

I would echo Dee about driving - its hard but reactions are not predictable.

love from Jean x

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Hi daffodil48

Welcome to the site.

You sound really on the ball! Bravo to you.

Tip: This forum tech is a little clunky. There is a key combination which wipes the post. I've not been able to catch what my fingers have done when I do that yet.

So, if your doing a long post its safer to type in a Word application.

The following is for Microsoft - Apple will have a similar scheme. (Google keyboard shortcuts)

When you have finished writing the post in a Word application:

CTRL + A Highlights the whole page

CTRL + C Copies the text into the computers memory

Then click to put the cursor where you want the text to go.

Now

CTRL + V will paste all of that text into the place where the cursor is.

Welcome :)

Kevin

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Unfortunately your husband's symptoms sound very familiar. Do you have any support?

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