My husband was just diagnosed with PSP three weeks ago. He didn’t catch the name of the disease and doesn’t want to know anything about it. All he knows is that he is an incurable neurological degenerative disease and is relieved that it is “not Parkinson’s”. In other words, he doesn’t know that PSP is as bad as and maybe worse than Parkinson’s. He already has a constant cough, chokes a lot, doesn’t feel well most of the time, is unsteady at times on his feet, ans has double vision.
I know he’s not ready to face the news so I’m not filling him in on what the future looks like. From what I’ve read, I’m terrified but I guess you just take it one day at a time. I’m grateful to have found a forum of people who are in the same boat and that I can learn from, gain support, and give support on this grim journey. My heart breaks when I look at my husband and I so want him to be happy for as long as possible and have a decent quality of life. Thanks for letting me share.
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Cottingham
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Welcome Cottingham! My husband expressed similar sentiments when diagnosed by neurologists as possible Corticobasal syndrome.
It overtook him faster than his brain was able to fathom, so maybe that was a blessing.
I could not get other doctors or geriatricians to consider a diagnosis other than Parkinson's (which I had suspected for a couple of years). I think it was just too hard for them to fill in the forms! We could not get to a proper neurologist until my love's back muscles gave out. Several months before, I had been researching for an illness that better mirrored what was happening. I had picked MSA (multiple system atrophy) with out any medical knowledge. Closer than Parkinson's, I think!
You will find great support here whatever happens. Plan to do what you can do together now and make memories for the more difficult times! You may still find that something else could shorten his life - as we all may face!
It is certainly a reality check! Take care and keep in touch with us all!
Thank you so much for replying - I'm already feeling like I've find a haven on this site.
Hello my husband is 55. We were told on 30.04.18 he has CBS. Like your husband he does not know the prognosis. It is so difficult and heart breaking. This forum is a go to place. People are so helpful and supportive xxx
Yes, it's quite a shock at first and quite frightening. I think most of us go through that phase.
The next stage I went through was reading here and thinking. I could never manage all of that. Well, little by little we come up to speed. It's a bit like starting an apprenticeship (when we were young) it's all terribly overwhelming at first.
Your husband will ask when he is ready.
The naughty part of me would suggest that over the next couple of days, you might print out one of the briefer PSP Assoc. information sheets and then leave it somewhere in sight, but not in his direct space. He can look at it if he chooses, or not.
The PSP Assoc. used to do a nice starter pack of information. If you telephone the help line they might be able to send you one. We used to carry their small PSP cards which had their contact info. and website address on it. We would hand them to people involved in my wife's care and stress that this was not Alzheimer's and ask them to check the information sheets for their profession. People are more aware of the illness these days though, but do ask your GP particularly to do this if they have not come accross this before.
It's scary at first, but very doable, little by little, one step at a time.
That sounds just like our story 4 years ago. It is a drip drip situation, I had to gently coax my husband into accepting his condition, he would only take so much on board but it's important to keep the channels open, discuss his wishes and get Power of Attourney for finance and health, this makes things so much easier to deal with. I'm sorry you find yourself here but it's the best place for advice and support.
It's good to know others have spouses who aren't ready to know. I'm trying (successfully so far) to not be distressed in front of him, although since the news is new, I'm very weepy. I'm grateful to know there are others out there going through the same thing and who I can learn from. Thanks so much.
I was very weepy when Ben was first diagnosed and I began to read up on the disease. Every time I looked at him my eyes would well up and I had to try to hide the tears as he was in denial. As Kevin says you just somehow grow into the caring role, get everything in place and always be ahead of the game, it's not an easy journey but somehow strangely rewarding, making sure that they get all the love and support that they deserve. You find an inner strength you have no idea you have.
Sending love and support
Kate xxx
Welcome to the site.
Scary yes. Take time to adjust to your new life. This is a slow moving disease. What will be required of you will grow slowly.
No two people experience this disease the same way. Everyone’s progression is different.
A year after Larry was told what he had he looked at me one morning and said “l’m not going to get better am I.“ Your husband will deal with it when he does. It’s a shock for him to hear what he heard.
The only real treatment is exercise. Some drugs may be of benefit but not a cure.
Ask any question about anything. Someone on here will relate and answer.
Don’t know what country you are in. What public help is available will vary on that.
Thanks so much. I'm in the U.S. Good to know that exercise does help - thankfully my husband is still exercising. I'm grateful for this forum already -
I remember that feeling of being so scared and overwhelmed and isolated.
My husband was diagnosed Sept. 2013 and died October 2017
All the above advice is good.
I left the PSP book out for anyone to read up about it. Some do and others don't. My husband didn't. He was happy for me to have the knowledge and he gradually took it on board. He needed to feel he could beat it. He trusted me to do the best for him !
I would stress that you do any thing you hope to do NOW. It will not get easier. Record his voice, video him NOW
Keep a sense of humour.
You will manage because you have to. We all surprise ourself.
Thanks for the kind words. Reading that other people are getting through it is so helpful. And I guess on the flip side, I'm already discovering that the love I have for my husband seems to be multiplying, which I'm sure will be a big help as we go down this path.
I always knew my Chris was very stoical but his resilience and humour as he deteriorated was amazing. Its so important to tell him you love him because it must be so hard to continue feeling loveable when you are so ill.
Sorry you had to find the site but it's a wealth of collective information. Since he doesn't want to know much about what he has I'd just wait till a symptom arises then just explain it's part of the disease the doctor said you have. At some point he'll probably want to know more and then you should sit down to discuss his medical options, legal options (Power of Attorney etc), and possible end of life options.
Thanks for the advice. I'll take it! I've told him a couple of times when he mentions his swallowing/choking/coughing problem that it is part of the disease his neurologist told us he has. He ignores that and next week is seeing an ENT doctor for the swallowing issue. It's good to know others have had the same experience.
I am so sorry you have to be here but in the circumstances the best place to be. I am still scared of what is to come with my husband wondering how I am going to be able to handle things, take care of him, how to afford paying for carers etc. We are in the USA . He is still walking although slowly and carefully and taking care of his own daily needs but I don't know how much longer this will last until "the next shoe drops" as I say. He was first diagnosed with Parkinsons then PSP He knows he has PSP and that it is the bad cousin of Parkinsons but I don't know if he has researched it or not. He still forwards me things on Parkinsons!!!!!!!!! At least being on this forum is preparing me on what might come and being prepared. I have already converted a bedroom to a bathroom with a separate shower and have put safety bars up. Read old posts and you will gain so much knowledge. BUT don't think your husband is going to have all these symptoms . Everyone is different, might get some of the symptoms, might not, might progress slower or faster. Any questions just ask. People on this forum will here to answer. we are one big family. We share the pain, the loss, the ups and downs and even have a giggle now and then. xxxx
Thanks so much. We're in the USA as well. Thankfully we already had our house up for sale for other reasons - it's definitely not set up for this disease, so when we buy our next house I'm going to ensure that everything we need will be on one floor and that the doorways/bathrooms, etc. are wide enough for walkers and wheelchairs. Thank you for taking the time to share your experiences. I'm so grateful to have found this forum. I've already learned a lot.
I understand your fear and I’m sorry you are both having to face this.
My 58 year old mum was diagnosed early this year after her symptoms being ignored by the GP for over a year and then she was told she has Parkinson’s. After the medication not working it was later diagnosed as PSP.
We were also clueless to what PSP was and it’s taken me over 6 months to get more of an understanding of this dreadful disease.
This site is so very supportive and I have found lots of information out from using it and from other people sharing there experiences.
I hope that your husband will come to terms with what PSP is and you get to enjoy as many happy times together as you can.
We are making lots of memories with mum now and enjoying all the good times that we have left.
You will receive lots of support from the lovely people on this site and I wish you and your husband all the best ❤️
Thanks so much for sharing. I hope to ultimately be able to give as much support as I am receiving. It helps to know others are out there making it through.
I'm a newbie, too. Ian was diagnosed with PSP Parkinsons a couple of months ago. We are British expats, living in Spain for the past 13 years.
I can recommend wholeheartedly the dear people on this site. I have found compassion, support, information, honesty and humour here. You will, too.
Ian hasn't developed the coughing symptom yet, but his mobility is very poor now, and although he manages slowly with a walker, I can see he isn't too far from using a wheelchair more regularly. He was diagnosed with Parkinson's just over 4 years ago, so he has had time to adjust to a challenging future.
We still believe in miracles and have very happily taken on board the "one day at a time" approach. It works for us! Every day is precious and we appreciate and love each other the more because of it.
I wonder if you have family and friends around you. Our daughter and family are in the UK, which is a little difficult for us, though FaceTime is great!
Friends here are very kind, but acquaintances can be rather patronising which tends to irritate Ian a little....not that they would notice! His voice is weaker now and he has some problems wordfinding, though he is still pretty sharp in his head! The frustrations are beginning, but he is so good natured that it rarely bothers him.
Many on this site have been on this road for a number of years. You couldn't have found a more supportive, wise and honourable group of people.
I am new to this too. My mum was diagnosed with PSP probably around the same time as your husband. She is 83 and otherwise in good health. She sees her ‘brain problem’ as a nuisance and is disappointed the Drs can’t operate! My mums solution to all things medical is surgery!
We haven’t gone into much detail of future progression with her as I figured it will scare her and it’s going to happen anyway. I am really struggling emotionally, putting on a real brave face whilst actually my heart is breaking for her and the road ahead.
Sending you love and hugs, I really understand how you are feeling just now.
I've been taking care of my husband who has PSP for about 4 years now--by myself until about a year ago and now along with the caregivers in the care home where he resides. We are also in the US. Like everyone else, we don't really know what will happen next until it happens since no two people seem to follow the exact same path. My husband, like yours, never wanted to know anything about PSP. He just blamed everything on getting older.
I see you've gotten a lot of encouragement already from the folks on this wonderful site. One big thing I see missing is any advice about self care. As your husband's illness progresses, you need to be aware of and diligent about taking care of yourself. This disease not only consumes the patient, but also the caregiver. Right now, it sounds like you are able to be out of the house, but eventually that won't be possible without help. It is so important to have some ME time so you don't lose yourSELF. Try not to let your husband's illness become your whole world. Find what works for you and make the time for it. You'll be a better caregiver if you take care of yourself too!
Best wishes to you and your husband on this unplanned journey..
I have a feeling that you know your husband better than anyone else so follow your gut instinct. Maybe his not knowing for now is the best thing for him.
This site is a good place for you right now . . . everyone knows so much about helping loved ones.
We're in a similar stage with my husband tentatively diagnosed CBD this spring. It was incredibly helpful for me to hear from others that there were several husbands who didn't know want to know the details. We did take care of the financial and legal paperwork--it's very important in the US to get a POLST (sp?) form signed, which gives you authority to make medical decisions (it doesn't even require a lawyer, and photocopies are legal--you can download it online.)
But overall, I want all the info I can get, and my husband doesn't--right there with you!
Thanks for sharing. It's such a relief to hear that others are in the same place, especially with a spouse who doesn't want to know or acknowledge the illness. Thanks for mentioning the paperwork - I need to get on that.
About the paperwork--we saw a lawyer, and in a one-hour session, we had the crucial stuff in place. (We have young kids, so we already had a will, guardianship and a living trust set up.) The POLST you can fill out at home, and it gives you the legal right to discuss all medical things. Laws have changed and even spouses aren't technically authorized to discuss medical procedures (though of course it's still done all the time--but just to be safe.) . The Advanced Directive is about what treatments are wanted or not, so it overlaps, but you need both.
Hello Cottingham. Although all of us wish we didn't need to be here, this place is a Godsend. My husband was diagnosed almost 3 years ago, and we reacted the same way as you and your husband...I cried and read, he seemed to attribute it to after effects of an earlier minor stroke even after he was diagnosed. For a long time I thought he was in denial. I see now that he knows what is happening, but chooses to look only at the day at hand. I try to do the same. All we have is now, so we might as well enjoy it.
My husband's decline was slow at first, more dramatic and rapid now. He is still able to care for himself, but his movement is very unsteady and falls more frequent. His voice is failing and he sleeps much more. I try to nap when he does, so I can be up when he needs me. You will adapt....both of you will.
Thanks for the encouragement. My husband is also attributing things to a couple of mini strokes that he had. I don't know where we exactly are in the process of the disease because he's had little things wrong with him for the past 1 1/2 and back problems which have had some impact on nerves for the last 10 years, so I don't know if we're in the late beginning or middle. He sleeps a lot, his voice is monotone-ish and a little hard to understand, and he coughs constantly.
Hi Cottingham welcome to the site, everyone here is great and so knowledgeable. I am more a reader than a poster, not as good as opening up like everyone else. My husband has PSP diagnosed 2014, he has NEVER accepted that he has PSP. Tells everyone he thinks he might have had 'a little stroke' but is on the mend....... He cannot even bring himself to say the words. He is such a lovely man, never complains, just gets on with everything he is asked to do to the best he can. It breaks my heart to see him deteriorate at the speed he is going. This disease is not only taking my husband but has turned my family against me because they feel I am not doing enough. Believe me I am, but I will not take his dignity away from him not for anyone. If there are things he still want to do I will let and encourage him and not wrap him up in cotton wool like they want me to. It is so very hard to cope on your own. Apologies I am ranting on, didn't mean to. Now you can understand why I read and not post. I wish you and your husband the courage and strength to battle with this terrible illness. Thinking of you both xx
I'm sorry to hear your family are not supportive. I decided it was more important for Chris to feel as independent as possible, even if it increased the risk.
I also got cross reminding him of how to do things. We both believed its the quality of life that matters. PSP really tests you !!!
Thanks for sharing. I can't imagine facing this AND dealing with an unsupportive family. I already know what you mean about letting him do things - I'm already making those decisions and am opting toward letting him do what he would like to do, even with the risk. He was such an independent, strong person and I don't want to rob him of everything. I'm sorry for what you and your husband are going through and I'll be thinking of you.
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