My wife first showed signs of something being wrong on Christmas Day 2019, when we noticed she could not use a peeler to peel the vegetables for our Christmas dinner.
From then till now the journey has been a roller coaster of emotions and life changing events.
We became keen walkers after Helen was diagnosed having just read the Salt Path (we were walking the SWCP when the book came out) and we had no idea what CBD was then and how devastating it can be. Those 630 miles and then the 1,000km of the French Camino two years ago have done nothing to stop its progress. I’m From being very fit and very active five years ago she has been reduced to shadow of her former self.
Over the first three years she lost the ability to drive, read and write, spell, do maths, recall her PIN numbers, put her cards in the machine, shake hands and her right arm and leg became stiffer and stiffer, with involuntary jerking that eventually led to knocking cups over and needing help drinking or feeding herself. Then came stumbles and falls and her balance started to fail resulting in her being pulled over by our dog as she tried to cross the road. Falls downstairs followed and next she lost the skill to do up buttons and dress herself, her eyesight though not great before started to become more akin to viewing the world through a kaleidoscope. We moved to our new home which we had specially built with no steps and wide enough doors throughout for wheelchairs. We also had a lift installed thinking this maybe required one day in the future. The long term future. This condition taught us a lesson on our smugness and accelerated again with her losing her ability to to walk more than a few steps, incapable of going to the toilet by herself and needing a wheelchair to go out and about in, a recliner seat to sit in each day to do the only thing she enjoys now, listening to Audio Books for four or five hours a day. We now have a hospital bed, she requires a bed wash every day, it takes a slow 3 hours to get the day going with myself and two daughters being full time carers for her. Her sleep is fitful with regular sleepless nights and her crying whilst muttering‘I wish I was dead’ or ‘I hate my life’ for two hours between 2am and 4am before getting an exhausted extra hour before asking to get up. Now we are getting up to date and this year (2025) we have hit the next stage and the condition has accelerated again. So she has to travel to the toilet in her wheel chair ( a commodore is coming), we have a WAV to take us out but that has only done 200 miles and 3 months,. She asks 10 times per hour what time is it, what’s for dinner, is our son at work, and forgets the answer as soon as it is given. She is now forgetting the names of her children and her closest friends.
She isn’t incontinent but the day gets closer, she still eats well and has gained weight over the last 18months and grown four dress sizes in that time. But now her voice is faltering, she sleeps or dozes for 8hours a day and can’t join in conversations with anyone. Her limbs are stiff and hands screwed up in a ball, she complains of pains in her feet and asks for foot massages in the middle of the night and sometimes twice a night, is always cold even though the house is heated to 24 degrees. The only question we have is: What’s next ? This condition is just shit but I wanted to share my last five years in a succinct manner so anyone reading this can know that the journey takes over and you need to get ahead of it because it changes over night and what was you normal yesterday will change again and again and become deeper and darker than before.
So if this resonates with anyone I’d be grateful to receive your comments on what’s next so I can at least prepare myself and our four wonders children for the next stage of our journey.
Hilda is just 65 and our travel dreams of walking the coastline of Britain in our retirement went out the window in February 2021 when we got the first diagnosis of it being Parkinsonsonian.
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HildaandHank
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I am so so sorry - PSP is a terrible journey. My Mum in Australia has it too. She I think is maybe a beat or two ahead of Hilda... she can still feed herself (just) with one hand grasping a spoon but her swallowing is becoming a problem. She has to have mushed-up food and even then chokes and coughs every few mouthfuls. Mum's speech has also gone, aside from saying 'yes' 'yes' (even when she means no) and shrieking. This reversal (getting yes and no muddled up) is apparently really common with PSP - at least so the neurologist told us - so if you haven't experienced that yet it might be one to look out for. It happened for Mum even when she could still speak - we would have to double-check what she really meant by asking in different ways and watching her body language etc.
Mum's sleeping patterns are also screwed up, and it has reached the point that Dad (who is on his own looking after her and also unwell) can no longer cope with so little sleep, so we are in the process of moving Mum into permanent care when her current emergency respite stay ends. We are trying to find somewhere that Dad can visit her and still care for her during the day (which is what he is insisting on) but where she can stay overnight so Dad has a chance to rest himself. In hindsight, I wish I'd been more organized in getting Mum onto waiting lists for nursing homes sooner - but because Dad insisted this would never happen, I let it slide, and now we are struggling to find somewhere suitable. So even if right now you are sure you'll never resort to it, my advice would be to quietly prep for a plan B, so you at least know the good homes in your area and are 'in the system' to be eligible for a place in them if the worst happens. Even if you swear you'll never pull that trigger - this disease can leave you with little choice if illness in carers strike
Again I am so very sorry for what you're going through. It sounds like you're doing an amazing job in caring for her.
So sorry for you that in 2025 you have to reach out to a forum like this to vent your feelings . It is a shocking indictment of our health system that there is very little support for this most horrendous condition. It will take a celebrity or a member of the Royal family to suffer from this before awareness is raised.
My family of 4 adults has cared for a relative with PSP for the last four years and have had very little support until the last two months when the falls became so frequent. Part of the condition is impulsivity and the was trying to get up by himself and would then fall. It became a situation of 24 hour watch which was impossible for us to manage. We have now got him into a most wonderful nursing home and when he tries to get out of bed unaided and stand ,an alarm goes off and help is on hand.We wanted to care for him at home but this became untenable and we now know that he is being cared for.
The PSPA has been a gem in the support and advice they have given. It is a lonely journey and a difficult one but try to get as much help as possible.
I am so sorry that you, your wife and your children are going through this. My husband isn’t as far along the CBD journey as your wife but I could have written what you have about our journey so far. My husband will be 60 in April and we’re in the process of moving house to one that is more suitable/adaptable and our son has given up work and moved back home to help care for him.
I wish you all the best and hope you can get some answers from others.
hello. I have never replied to anyone before but your story of your wife is exactly the same as what my mum went through. I felt I had to share with you our journey so far
My mum has cbd and was diagnosed 2020 Dad struggled to care for mum at home. And dealt with everything you’re going through. He kept going because it’s what you do. He was up in the night transferring mum to the commode maybe 4-6 times a night. Later down the line Mum did have carers 4 times a day which was a godsend
Then one day dad had a mini stroke and had to go to hospital. (He is now fine) mum went into temporary rest bite. We then found out she couldn’t return home because the care team and deleted her care package!!
Four weeks later we moved mum to a much nicer nursing care home. It became apparent mums needs were too much for dad. She could still just about walk with a frame go to the toilet with assistance. Her speech was still fairly good as time went on mum declined as predicted with cbd
Two years down the line mum is now under nursing care in the nursing home. It’s the best move we made. She has been well looked after for the last two years.
Her decline has now made her none verbal although sometime will answer with ‘yes’ with a very quiet voice. She used to cry out a lot with this awful howling noise which is quite upsetting. this has not happened for a while. She is on some sedation which helps. She doesn’t generally acknowledge us when we are there now. She totally understands everything you say to her. She’s double incontinent has to be moved with a hoist. both arms are twisted. Her whole body is quite stiff although her legs still have some movement. She is in a what we call a special chair because she can’t support her head. The careers feed her puréed food and is given thickener in her drinks. She often chokes while been given drink and food. But can still tolerate it. She has suffered with a few chest infections recently.
She is still dressed every day and joins other residents in the lounge area. Most importantly she is safe and well cared for
We don’t know how much longer mum will suffer with this awful disease.
Im hoping my story may help you. Not everyone with this condition is the same. My advice is record your mums voice while she can still talk because once it’s gone you miss it like hell!! I would so much love to hear it again. definitely look at the nursing homes in your area. although you may never need them. But we had to act quickly when it came to it.
Just a very quick reply in empathy with losing out on retirement plans. My partner was diagnosed with PSP (not CBD) three years ago at age 56. I am still working and active while he sits in his recliner chair all day listening to audiobooks. We also were planning to walk long distance paths in retirement and probably relocate to the Isle of Skye. All a long lost dream now. He is not as far along as your wife, but it’s only a matter of time. These conditions are unbelievably cruel.
My wife has had CBD since diagnosis in Jan 2016 at that time the only problem was with her ability to write things down.
After a visit to her GP they thought it might be a tumour and she would need an MRI scan which would take about 9 months to achieve so we paid for it and that is where our journey began.
At this point in time she is no longer able to walk or talk and there is no way to communicate at all so I never really know what she is thinking. We think she understands as she will smile in all the right places. Fortunately she sleeps quite well at night and more in the day now. The CBD affects her right hand side mainly although she sometimes now will get tremours in her left arm.
We managed to get CHC funding which was a godsend as she now has double up carers 4 times a day plus an hour in the evening to help feed her as it takes about an hour with minced food and level 2 drinks. I also have 8 hrs respite a week to allow me to play golf which is my passion and I want to carry on as long as possible as I am 80 now.
After travelling a lot we are now reduced to just taking my wife to the local Hospice day centre for a few hours which I think is good for her and again for me.
I have had conversations with the doctor at the Hospice with regard to peg feeding as my wife always said she did not want to be fed by a tube. That will be the next hurdle to get over as I have said that she is not to go into Hospital as in my opinion that would not be in her best interests. She either stays at home or into the wards at the local hospice.
Hope this helps and it allows me in a small way to maybe help someone else navigating this horrendous disease.
Hi Hank,Your story resonates with ours indeed. Looks like your wife's journey started around the same time as my husband's. Unfortunately He couldn't walk very far unlike your wife. That apart the rest mirror's our path with all its emotional turmoil, fears and worries. He is a shadow of his former self. Sometimes when he chokes very badly or he is drowsy I think it is the beginning of the end (and I wish it was for his sake because it is such a struggle for him).
On the practical side I wonder if you have enlisted the help of your local hospice. Ours has been a tremendous help and support. They can certainly direct you for the next part of the journey.
One more thing I have to say is to look after yourself. Be kind to yourself and also get some rest and respite. I play golf and that has been been my escape all this time.
Nothing can be said about the problems to come. But, please be very very very watchful for coughing while eating or drinking (swallowing problem) as that is life- threatening. Please also, don't let her fall while transferring from bed to wheelchair etc. etc. Further, continue caregiving as far as possible at home. Don't worry much about what is to come while destressing yourselves. I salute you and your two daughters for the precious caregiving work you are all doing. What medicines is your wife taking? Best wishes to yourself, your daughters and your wife.
Dad has late stage CBD, it’s been a dreadful journey, he has suffered too long. A guy who was very active, played good twice a week to someone I don’t recognise.
This forum has been a lifeline to other people who can empathise and understand.
I am so very sorry for anyone who has to deal with this insidious disease. My husband has CBD. He was diagnosed in 2019. At that time, he was able to walk and drive and so anything most anyone could do. Like you, I worked out with him a your local YMCA. He went to PT. He had speech therapy. Nothing slowed or helped his disease. By 2021 he could barely walk with a walker. By 2022, he could barely feed himself. By 2023, he was wheelchair bound and by 2024, he was totally incontinent and bed bound. His speech worsened with each passing month and now is just a series of grunts. His vision is almost gone. He has to bed fed and his liquids are thickened. It is not far into the future where he will be on a liquid diet as his chewing,swallowing and even opening his mouth are becoming more and more difficult. He sleeps about 18 hours a day. We are blessed that he has no pain and occasionally we can get him to smile or even laugh. God has been good to us through this difficult journey, always putting people in our path to encourage and lift us. He never said we would not have difficulty only that we would not bear the difficulty alone. Our prayer now is that the angels would come and take him to his forever home where someday I will rejoin him and rejoice that we are together again. It has taken me a long time to reach that stage in this journey but it is tearing me apart to watch this decline and awful life he has. I am determined that his last breath will be here at home with me. I do pray, though, that the Lord would take him soon. I wish you well in your journey
Hi, my mum is 71 and was diagnosed with CBD when she was 66. I can relate to your post in a big way, much of what you have described mum/we have experienced. Please feel free to read my biography which provides a timeline of my mum’s experience with CBD. My parents moved over 200 miles to be closer to family/friends after diagnosis and moved into a bungalow. If I can be of any support of information please do not hesitate to make contact.
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Swallowing Progression
