Hi I'm new to this site. : My husband Chip... - PSP Association

PSP Association

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Hi I'm new to this site.

Jafarrar
Jafarrar

My husband Chip, was diagnosed with cbd three yrs ago. I was looking for information when I found this page. I've all ready gotten information from reading what others wrote. Thank You All for sharing. Chip has not walked in two years. I wanted to see what to expect coming our way.

Jenny

31 Replies
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Hi Jenny and Chip, You look very young to be inflicted with this beast. Welcome! You have probably found my posts. They seem to show a different pace to what you are experiencing. My John was unable to walk only in the last 3 months when he lost control of back muscles, I think.

Keep fighting while you can and try and keep ahead of the progression! Get help and respite and try to keep talking to each other! John retreated into himself and it was difficult for me to understand how he felt, except through visual interpretation. I was not very sympathetic at times until I understood what was happening thru this site!

Hugs

Jen xxx

Hidden
Hidden

Jenny

What a great picture! Take lots while you can for more reasons than you can expect right now. Then get ready and fasten your seat belt as it's going to be a bumpy ride.

My mom was diagnosed with Ataxia,, then Parkinsonism, then MSA and finally CBD. She went from walking to now bed bound in just 6 years.

I have learned most about his horrid disease from online reasources but this site has been the best. I have found a wired sort of comfort in reading the posts and learning what others are going through. I don't feel so alone and it helps to hear what others think, feel and experience.

Best words of advice, get your affairs in order NOW while you can still discuss things together. Talk about the hard decisions you will eventually be faced with and find out what his wishes are. Start early and practice a simple 2-4 gesture way to communicate because there will come a time you may wish you could read his mind.

Lastly, this will be a difficult journey. You will not be able to do this on your own so start building a support team, not just for him but for you too.

I don't mean to sound harsh but I'm a planner and I wished we could have done some things earlier with my mom. My advice comes with empathy for you and your family. God bless you and grant you strength, courage and wisdom for what will come.

Bargiepat
Bargiepat in reply to Hidden

Hi Jenny,

This comment by Ysanty is certainly good advice .........

'Best words of advice, get your affairs in order NOW while you can still discuss things together. Talk about the hard decisions you will eventually be faced with and find out what his wishes are. Start early and practice a simple 2-4 gesture way to communicate because there will come a time you may wish you could read his mind.'

Best wishes,

Patrick.

What do u mean 2-4 gesture

Hidden
Hidden in reply to cabbagecottage

Thumbs up meant yes, ok, good. Thumbs down was no, don't want, not good. Blink the eyes means yes, closing the eyes and leaving them shut means no. Anything that can help you to understand what they are trying to say. Practice it early so they get used to using it and it becomes second nature. Then when they can no longer communicate by language, they can use these hand or eye signals. Create more if you need to suit your situation.

cabbagecottage
cabbagecottage in reply to Hidden

Yes we do that

Jafarrar
Jafarrar in reply to Hidden

Thank you for the advice it is scary but I do want to be prepared and ready as possible..its like watching someone dyeing a little every day. Jenny

Ettavb
Ettavb in reply to Hidden

I'm also a planner, and yet -- in trying to follow Mom's wishes (CBD) - she repeatedly tells me she doesn't want to think about the future, the "what if's". She cuts me off every time I try to have future discussions. I believe that it is because of the disease impacting planning - that this has become a particularly difficult aspect for me. When I do plan ahead (got her a lift chair before she needed one -- but had been looking for one second hand for awhile because I knew she would eventually benefit from one). she demonizes me to such a point I feel terrible for trying to help - even though I have that logical conversation in my head that this is just the impact of the disease. (She eventually came to love the lift chair and we had to move it the same night she transferred to an assisted living facility - as she didn't want to go without it).

Jafarrar
Jafarrar in reply to Ettavb

My husband still thinks he will walk again. He doesn't think he will die with this illness. I have tried to talk to him about it but he says it doesn't want to talk about it. Jenny

Ettavb
Ettavb in reply to Jafarrar

Same with Mom.

aliciamq
aliciamq in reply to Jafarrar

My husband thinks he can still drive😱

aliciamq
aliciamq in reply to Jafarrar

Isn't that interesting ??? i see I already commented about the driving ~ i think the fact that psp folks aren't "sick" allows some room for hope and a natural inclination for Denial ~

We had a terrible experience getting my husband to the toilet at intermission at one of the kids plays - no wheelchair in the house😬 Well, My son bought his dad a wheelchair and had it delivered to the house😲. I hid it in the garage knowing he wasn't ready for it. I wasn't ready either!!!!!! Tuff stuff.

honjen43
honjen43 in reply to Ettavb

You are probably right Ettavb in thinking so! I was never sure of how my husband felt or thought as he was never one to communicate or discuss matters, unless it was a holiday or doing something with the house.

I also think there was an 'ostrich' attitude too - bury your head and it will go away; don't think about it and it will get better!

I also think there was a great deal of hurt pride! He concealed what was going on from me, refusing to acknowledge that a wheelchair would make things easier and keep him in contact with other walking company.

I think even dying took him by surprise - though he seemed to be often hallucinating in this period in hospital. And I still am not sure he was aware until the week before.

I do know and fully understand what a drain on mental energy it is for the carer to keep on top of the disease and make the best s/he can of the fast changing situation.

Take care all you lovely carers! Hugs to those being lovingly cared for!

Hugs

Jen xxx

Thank you sounds like good advice. It is hard to watch a strong man deteriorating before your eyes. We have been married 52 years.

doglington
doglington in reply to Jafarrar

Yes. It is heartbreaking. We have also been married 55 years and sometimes I feel I have lost him altogether. Then he revives and I can see he is still there but trapped.

love, Jean x

Flemingc
Flemingc in reply to Jafarrar

So much good advice. My husband was diagnosed with PSP a year ago, just 3 months after we got married. We started dating 5 years ago at the young ages of 62 and 61! We knew "something" was wrong for several years, but always believed it was something that could be managed. Sitting across from the dr - the 7th neurologist we had seen in search of an answer - and finally getting the horrible news was a shock everyone here has experienced. We try to make the best of each day. Some days we fail miserably! But we keep trying.

Hugs,

Chris

aliciamq
aliciamq in reply to Jafarrar

We just celebrated our 50th🙂

Welcome to the site and am sure you will get great support and information here. It sounds as if the disease has progressed quite quickly and I again would advise you to try to be one step ahead of the game, get your house in order and be sure of his wishes. I send you both every good wish and am sorry you are having to tread this arduous road with us.

Love Kate xxx

What 2-4

i don't know what u mean, cc

ll. jill

xxxxxx

07

Sorry Jill it was a reply to a replybabive .. 2-4 gesture

honjen43
honjen43 in reply to jillannf6

Hi Jill. I don't quite understand the 2-4 either. But understand it means the signals you CAN do to answer yes or no. Such as thumbs up or down; and blinking short blink for yes and long shut for no. Can imagine that could be difficult for some to manage with eye problems.

How are you getting on? Have you time for a quick raising of a glass of wine? We have absolutely horrid wet weather at the mo - so I need some spirits raised!!!

Love and hugs

Jen xxx

Welcome to this site.There is much information to be had here and emotional support and encouragement as well! My husband was diagnosed with Parkinsons 8 yrs ago and with PSP 1 yr ago,He can walk but must walk with him to prevent falls.Up until 2 months ago he walked in the house without help but the falls became so frequent that I don't let him any longer.

We use a wheelchair sometimes away from home but his incontinence keeps us mostly at home.

Best wishes to you and your dear husband!

Chip is incontinent also we use pull ups and it does keep us at home. Thanks for your support. Love Jenny

aliciamq
aliciamq in reply to Jafarrar

That incontinence(double) seems to rev up when we go somewhere, so we stay close to home - this is the first year we haven't taken a trip north to our son's cottage😐 After a bazillion years of constipation ~ now this!!!!!😱 We do well the more we stick to a routine it seems🙂 "I" do well the more we stick to a routine- LOL!!!

We have the same problem. If he does feel he has to go, it is so difficult to get him to the bathroom, that we likely will not make it. The added problem is that now it is so hard to clean him up. He is a proud man. I sympathize with him and feel so bad. There is a day or two each week I feel confident he’s OK to go out. We must leave again for Mayo in a Couple days and he has not had a movement is several days. This makes me nervous.

This is not one of the things I thought I’d be worrying about, but is certainly is an issue. Thanks for your reply. It’s nice to know someone else is going through the same thing. This is one thing I do not discuss with family and friends. Do you have any tips? .

Karyn

What a lovely photo!

Welcome to the site.

It is a place that no one wants to be but everyone here is so helpful. Sometimes it is the only thing that keeps you going. My husband has CBD and was walking until 3 months ago. Now he is almost completely unable to move at all and is bedridden. I think everyone is different.

My advice is to do everything you can while you can and make sure you look after yourself. This is an exhausting disease for a carer. I wish I had taken my own advice!

I'm thankful to have someone to communicate with about CBS. My husband was diagnosed 3 or ago and not walked for two years. His left arm does not work either. His speech is starting to get bad and has trouble finding words. It is very hard to watch him get so bad. Thanks Jenny

I read this in a reply you made to JantheNana.........

"Chip won't look at me or anyone he just looks down his head slumped over. It breaks my heart."

I can understand how this must be so hard for you to cope with on top of all the other things you are having to deal with.

Just wanted to say that.

All love to you and Chip.

Patrick.

Jafarrar
Jafarrar in reply to Bargiepat

Thank you Patrick God Bless you all for sharing things I don't say to any one cause they don't know what it is like really. Love you all.

my hubby is 57 and im 46 dealing with CBD thankyou everyone,everytime i come on the sight i learn something i know will help us and i dont feel so alone.

it so sad to watch this disease its cruel

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