I’m new to the site. My husband has CBD - PSP Association

PSP Association
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I’m new to the site. My husband has CBD

Strawhalos
Strawhalos

I guess I’m just looking for support through this process from people that understand it better than I do. My husband was diagnosed a year and a half ago. He has horrible apraxia and needs help with nearly everything.... dressing, showering, shaving, etc. I feel blessed that I have the time and freedom to devote to him but it’s a lot. He just had surgery to relieve the pressure on his brain from a pretty horrific fall. It seems like every day there’s something new we discover that he can’t do. His speech is affected in that he has a harder time finding his words but can still carry on a very intelligent conversation. I’m just trying to stay in the moment and be grateful for the blessings we have and not what has changed. Thanks for letting me vent and I appreciate any comments or feedback. ❤️

28 Replies
oldestnewest

Hello Strawhalos, and welcome.

Don't apologize for the rant! That is what we are here for. We understand the strain and the anxiety and have had a rant or two ourselves along the way.

Sorry to hear your husband's diagnosis. Whether CBD, or any of the neuro degenerative diseases recognized here, it really makes little difference in what to expect. Even those with undisputed diagnoses vary in the pathway they take, and the time they take over the illness. Past posts here may help you. The number of posts on CBD has grown in the last few years.

It helps if you let us know what country you are in. Then those in that country may be able to help in regard to health services as every country seems different in what it offers, and how to go about getting help.

General advice when you find you or your partner are faced with such diagnosis is to put your affairs in order; make a will, get Powers of Attorney, living will, DNR, talk about brain donation, etc, while communication skills exist. Sometimes there is a real reluctance to discuss, or you want to postpone thinking about it, but it is well worth it, and you can have thoughts and anticipate decisions. Then write a bucket list of things you want to do and go tick them off, as best you can. Stay positive, and think of ways around the "can't ".

I live in New Zealand and my husband died of suggested CBD 3 years ago. He did not donate his brain for autopsy and research so there was no confirmed diagnosis. Our story can be found by touching my name or emoji. It was brief and frantic and horrid - when I look back, I realise it had been going on for a lot longer, but this was just the end stage. He probably began showing symptoms 4-5 years earlier.

Don't despair as you are now not alone and have a supportive family who know very well what you have to deal with, the frustrations and the loneliness.

We can help, so just sing out!!

Hugs

Jen xxx

Strawhalos
Strawhalos
in reply to honjen43

Jen, you have just touched my heart. What wonderful advice and I do appreciate your words of understanding. We live in the US, Las Vegas to be exact. I think a bucket list sounds like a great idea! We have always done a lot of traveling around the world and even though he has limitations we are finding ways to manage. I think planning a trip would be fun and uplifting for him. Thank you for taking the time to respond. It means so much to me.

Tonda

honjen43
honjen43
in reply to Strawhalos

I remember the Las Vegas experience well!

My hubby and I were there in 2011 and stayed at the Circus Circus. Was first time I remember him finding it difficult to navigate. He was usually so adept at getting from place to place following a map. We got lost in the hotel and he insisted we should not have to go through the gaming lounge to get the lift to our floor.

We did - and on the way he put down our bag of Duty Free liquor - and left it somewhere on the way!! He insisted he had got it to our room.

Had not thought much about it at the time, but more recently I wonder when his CBD started, and think that may have been the first defining moment.

I took him on the helter skelter and he wasn't happy on that!! Then several trips in and around Grand Canyon where he did not handle things well, and a long bus ride to Paige where we got a Smooth Water rafting trip. Great fun as far as I was concerned!

Then to cap it all - the plane back to LA forgot to pick us up, and we were put on another which gave a flyover of Canyon.

So quite an experience! Bet it has changed since then!

Hugs

Jen xxx

Strawhalos
Strawhalos
in reply to honjen43

It certainly has changed! This town is ever evolving! You mentioned “back to LA” we have a second home there too. It’s my husband’s happy place, by the ocean. Sounds like quite a memorable trip to Vegas for you! As I’m starting to understand this condition somewhat, I’m better able to look back and see what was probably early symptoms of his condition.... I used to think he just tuned me out and I’d become frustrated that he wasn’t paying attention to me. I see now that he was having trouble shifting gears if he was in the middle of something and I spoke to him. The “multitasking” for him is no longer an option.

Thank you for sharing❤️

Tonda

honjen43
honjen43
in reply to Strawhalos

My hubby often tuned me out! It was something he learned to do as a 5-year old when life was unbelievably crap and he didn't know what else to do. All on his own!

But yes, it was more obvious latterly, and he became quiet during conversation- whereas before he dominated it!!

Hugs

Jen xxx

I agree with all Jen has posted. If you are in the U.K. You will be able to get help with care. My wife had CBD and we got full NHS CHC funding and also caring help from our local hospice. We also received a lot of help from our local PSPA group. Your so called rant was very mild compared with many of the rants and cries for help we read on this site. As you read through the posts you will find out how helpful this site can be. Ken.

Welcome to the site. Venting your frustrations is a normal thing, we have all done it.

I agree with the others that getting outside help will improve things, even if only for a few hours couple times a week. Since you husband is communicating reasonable well I'd ask him about his his wishes in regards to future medical treatments and life saving options. If possible get it all legally done so there is no question about what he wants.

Ron

Thank you, Ron. I agree. It’s a hard conversation to have but an important one. Then again nothing about this journey is easy❤️

Tonda

Strawhalos,

My husband also has CBD, and this site will be more help to you than any doctors (not that we don't need them, too). Hugs.

Lost

Just the few responses to my first foray seeking support has helped me so much today. Thank you for your comment, I already feel less alone.

Blessings

Tonda

Hidden
Hidden

Welcome to the site, the lovely people here helped me more times than I can tell you.

If you are unsure of anything, just ask a question, someone will have an answer as we've all been there.

I agree with Dadshelper, get all the legal bits done (Power of Attorney -Health and Finance) as soon as you can. It helped me enormously when my brother lost his power of speech and people on the phone would say "can I just speak to him to give his consent".

I wish you well on your journey, we are all here for you.

Big hugs

Sue x

Hi -- Welcome to the site! My mom has CBD. She's in a more advanced stage, but the symptoms you described are nearly exactly what we experienced with her about 3-5 years ago. Please reach out if there's any way we can be helpful. It's a very tough road, and part of it is more manageable knowing that you are absolutely not alone.

We are in Illinois. Though I just returned from a week in Las Vegas. I go every year for the National Finals Rodeo.

Strawhalos
Strawhalos
in reply to zls23

Thanks for reaching out! It does help knowing that there are people that understand the fear, uncertainty and anxiety that accompanies this journey. I hope you had a great time at NFR! I’m a Kansas girl so the rodeo takes me back to my roots!

zls23
zls23
in reply to Strawhalos

I love it! I've been going since 2011 or so.

Welcome Tonda 😊

My husband had CBD before he died 18 months ago. This community helped me keep my sanity when the world was shrinking and I felt helpless!

Loss of Communication was the hardest thing for him. I never would have guessed that one of the most important things I could do was help him communicate. (That's a whole huge subject!)

And be aware of "plateaus" and "step-downs" or "stage-downs".... This disease often isn't an even smooth curve downward. We adjust to each new normal - and another step-down comes.

There is also a treasure trove of advice in the historic posts: use the search window up top or better, type the query and include Health Unlocked in the wording.

All the best in the fight!

Anne G.

Thank you Anne❤️. I’m learning about how every day is it’s own challenge. Some days are really good and some days are really difficult. My husband is still communicating well but I can already see how painful the loss of that will be. We are already trying to find creative ways around all the challenges he’s facing. So grateful to have found this site. Thank you again for sharing!

Tonda

One of MY necessary adjustments was to stop my "complexifying": e.g. "Honey, do you think this..or that...or maybe..." 3 things to process and respond to! Eventually we had to move to picture boards and "yes/no" cards etc.

But I do know my strength and calm (as much as I cd manage) and love and maintaining as much quiet routine for him as possible was the best thing I could do for him.

❤️. Anne G.

I’m learning about simplifying as well. He gets confused sometimes and I don’t want to contribute to his discomfort. 💕

Welcome Tonda (Strawhalos). I have PSP but am also being evaluated to see if I have concurrent MSA. I live near Orlando Florida but have been to Las Vegas to many times to count.

As these disorders (PSP, CBD, MSA, FTD) are clinical diagnoses and have similar, overlapping signs, autopsy of the brain will be the only way to confirm any of these.

I have seen the responses the others have already offered and can only offer one more piece of advice at this time. When searching the site for CBD related information, be mindful of what you are looking for. Besides Corticobasal Degeneration (CBD), there is PSP-CBS (Corticobasal Syndrome; sometimes just lumped in with CBD in the conversations) which has many of the symptoms of CBD, and there is also Cannabidiol oil which is also abbreviated as CBD. It can be confusing at times when you search for something like CBD symptoms and get symptoms believed to be relieved by the oil instead of the new symptoms you are looking for.

Tony

Hi Tony! Hoping your visits here were for pleasure and you didn’t leave us too much of your money! Thank you for the advice. It can be confusing to be sure. I’m still trying to understand the difference between CBD and CBS. I’m not certain what MSA is either. Google has become my best friend. I’m sorry for the journey you’ve been on and the trek ahead. Prayers and blessings of peace and comfort with you on this path. I’m taking a great deal of comfort in having found this site. The lack of understanding of these neurodegenerative conditions makes me feel pretty alone.

Tonda💜

Tonda, the CurePSP.org website, based in the U.S. contains a lot of good information, including support groups around the nation. Here is what I found in a quick search for Las Vegas.

Support Group for anyone affected by PSP/CBD/MSA

888 West Bonneville Avenue, Las Vegas, NV, USA

Las Vegas, Nevada 89106

Facilitator(s): Ruth Almen 702-483-6054 ALMENR2@ccf.org

A brief explanation for other paths you may encounter on this site:

MSA is Multiple System Atrophy. Another life limiting neurodegenerative disorder. It is mostly impacting the cerebellum. It is characterized as an alpha-synuclein protein problem vs. the Tau protein problem found in PSP and CBD.

FTD is Frontotemporal Disorder or Dementia. It is an umbrella term, along with Cerebellar Ataxia, that encompass disorders with similar presentation. This abbreviation can also be used for Lewy Body Dementia (see below).

FTLD is Frontotemporal Lewy Body Dementia and sometimes called Frontotemporal Dementia with Lewy Bodies or just Lewy Body Dementia.

Dementia is an overall term for diseases and conditions characterized by a decline in memory, language, problem-solving or thinking skills that affect a person's ability to perform everyday activities. Contrary to popular belief, dementia does not mean Alzheimer's, but Alzheimer's is the largest and most well known dementia. Dementia also does not automatically mean memory loss. I and many sufferers have Executive Function Dementia. This means that my short term and long term memory is intact but my working memory is disrupted. I have impulsivity because I don't immediately recall that I'm not supposed to do something in my working memory but if you ask me I KNOW I'm not because I can recall that from short term memory. It also means that I have difficulty with planning, organizing, apathy, self control and thinking.

By the way, my visits were for pleasure and I never spent more than I had budgeted. I spend it all at Walt Disney World now! LOL

Tony

doglington
doglington
in reply to Railfan

That's such a useful description of the loss of brain function I observed in my husband. Spot on !!

love, Jean xx

Tony, wow! You are awesome! What a resource and wealth of information you are and I’m so appreciative! I’ll reach out to the local support group today!

The explanation of dementia is particularly helpful. It puts into simple terms what my husband is dealing with. We’ve both balked at the dementia diagnosis but the impact on his executive function capacity fits right into the definition. I’d say Rons apraxia is the greatest challenge we’re dealing with at this stage but his planning, multitasking and speech are also very much affected already.

Disney sounds like a more satisfying place to spend money if you ask me!!!!🤣

Thank you again for everything, Tony, and give Mickey a hug for me!

Tonda

Railfan
Railfan
in reply to Strawhalos

Thank you for your kind words. I will give Mickey the hug. I mean, he was my boss until I had to retire due to this. I should be fine with giving my ex-boss a hug. After all, I have given Goofy a hug.

Strawhalos
Strawhalos
in reply to Railfan

How awesome to work for Disney! That’s a dream come true for so many! How long have you been retired? My husband just sold his business this year knowing that he wasn’t as sharp in business matters as he’s always been. It’s been an adjustment for sure but I’m choosing to see it as an opportunity to spend more quality time together!

Kinda jealous about the Goofy hug!

I medically, early retired last year due to PSP symptoms. My wife retired this year to be my full time caregiver. I found myself not being able to keep up mentally at first, followed by falls backward beginning in early 2016. It has progressed from there. I had multiple skill sets that I can no longer perform. I was a Statistician, Computer Programmer, Database Developer and Project Manager. I had to go on Social Security Disability as I'm only 61 now.

Tony

Strawhalos
Strawhalos
in reply to Railfan

My husband retired fairly recent as well. He was becoming somewhat overwhelmed with the wealth of multitasking involved in owning a business, knowing that he wasn’t as sharp as he’s always been. Even with “half a brain” as he likes to joke around about he can still run circles around me! We find a lot of humor, albeit dark, in much of what is occurring. You’ve got to find laughter and joy where you can!

Hello, I think we’re neighbors! I sent you a private message. Since you’re new to the site I’m not sure if you’re familiar with this feature. Click on messages at the bottom of the home screen in order to access it.

Cheers!

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