Dads finally at rest after 8 and half year... - PSP Association

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Dads finally at rest after 8 and half years suffering from CBD.

Rologirl79 profile image

Hi everyone not been on for the last 10 months as its been an awful rollercoaster watching my dad deteriorate. He passed away on Thursday morning at 7.00am and I'm truly devastated but also glad he's at piece.

Looking at photos from 8 years ago to now it does tell the story.

Past 10 months he really did suffer and will tell his story if anyone needs to know anything at all about CBD.

I know he's sleeping now with God and he's in a better safe place out of misery and pain.

Amanda xxxx

23 Replies

My sincerest condolences

Agree that your dad is now at peace!

Yes please share, if you don't mind, it will help us all

Please do keep in touch x

So sorry to hear of your loss, Rologirl79 . It has been a long road for you both. You will see I have been there too.

I found the first 3 months most difficult to handle. So keep in touch.

Make time to grieve, to remember, and then gradually get your life back up and running again.

Someone said to me recently, never refuse an offer of lunch or other activity, even if you are not quite ready! You can stay a short time if it doesn't feel right.

Expect to be tearful! Don't be afraid of the emotion! I found it helps!

You have lots of time on your hands now. Use it to relax. This can be hard at first but there is no hurry. Think about the good days with him and the bond you had together. When you are ready, make plans for what you might do in the future. Read a book - that took me 3 months to do and relax at the same time.

So, it's time to wind down, take stock and catch up with the old 'normal'.

Keep in touch!

Hugs, Jen xxx

abirke profile image
abirke in reply to honjen43

Well said, honjen43

So sorry for your loss but at least your dad is at peace take care xx

I am so sorry to hear your news Amanda. Your Dad is free from it now and is most definitely at peace . Take care of yourself ... catch your breath and relax in the knowledge you helped and loved your Dad as best you could . Thinking of you . Xxxx

Sorry to hear your sad news x

So sad to hear about your dad. Dads and daughters have such a special bond. It's time to take care of you now. Look after yourself

Dear Amanda, so sorry for your loss. May you Dad rest in peace, finally free from this evil disease. There is only one way grieve and that's your way, don't let other tell you different.

Lots of love


I'm new to the site during your last 10 months with your Dad.

I'm sending you and your family much love at this traumatic time of his passing. May he now be forever free. Take comfort he is free and time for yourself to come to terms with everything that has happened during his illness.

My Mum has CBD and seeing the photo of your Dad I can see the same look on the face. When you feel ready and if you still want to tell your story I would be very grateful.

Much love x

God bless you and your father. X

I'm so sorry for your loss. You are right though he is at peace in a much better place. These horrible illnesses are not a good way for anyone to live. Take time for yourself to grieve. Love and prayers to you and your family.

So very sorry for loss. xx

So sorry to hear your news. I'm sure he is at peace now. You can now remember all the memories from the past and all the good times you shared before CBD

love from Jean xx

Sincere condolences on your very sad loss cbd took my husband nearly 4 ago he was only 63 had it for 8 years would not wish him back for a minute to suffer that horrible illness just remember your Dad as he was before CBD got a hold of him take care to all out there still facing it every day stay strong

Dear Amanda so sorry to hear about your dad. He is at rest now and no longer in pain. My husband has CBD for 11 years all of a sudden he is going down fast all he wants to do lie down unable to walk, his speech is getting bad. So my preys to you and your family god bless and know you are not alone.


Hi everyone thank you so much for all your kind words and inbox messages means so much.

It does not feel real at the moment been the most emotional rollercoaster I have ever been on. Not just for me but my 4 sisters and 2 brothers and of course my mum who has been married to my dad for 53 years.

The past 8 years has been hard.

My Dad started with a pain in his left arm which eventually doctors was not sure what was causing it. Around 2 years after the pain in the arm started he started losing feeling in his left leg which doctors finally diagnosed CBD. Obviously it was so rare that we was unsure what it was and if there was a treatment for it.

Once diagnosed he was sent for Botox injections in his arm to help with the pain and we got on with life and helped him as much as we could. Doctors told me and my sister that life expectancy was around 8 years so we was very upset and shocked to hear this but thought we will be there for him no matter what and my dad as always been life and soul and one very strong man.

For around 6 years dad started falling a lot and also his speech had become affected to the point we had to ask him about 3 times what he said. He became very frustrated and depressed at times as the man who was once very independent became more reliant on help which he tried to decline.

Fast forward to the last 2 years things got a whole lot worse for me and my family we had to get care in to help which was my younger sister and her fiancé to help him clean, wash get shopping, appointments etc

He was also in and out of hospital as on many occasion we would go to see him and find him on the floor covered in blood where he fell and hit his face, broke his nose, fingers :( god you make it was the most awful thing to witness.

Eventually mum could not cope and we thought it was best he went into 24 hour private care that was 12 weeks ago.

At this point he could not talk, walk, or even let us know if he needed toilet or if he was hungry. The only way he could tell us is by squeezing our hand or his eyes use to open wide.

Once in 24 hour care things did not improve he dropped to 6 stone and looked very frail made me cry every time I seen him. myself took him out every Tuesday or Thursday on my days off and took him shopping and to thorntons for hot chocolate but he was just sleeping most of the time.

Last week I took him out and I noticed he was not even able to sneeze my hand when asking him a question it was like he was no longer there he could not even look at me :(

All my brothers and sisters said the same thing.

One thing I did notice is that his ankles were swollen one bigger than the other and he felt cold and his toes were blue at the end. I called the doctor as I was very worried and on Wed (next day after my call) he told me that it looked like a sprain or maybe fracture.

He said that dad needed rest and also maybe the feeding tube due to the amount of weight he had lost.

I said I would speak with family and get a meeting together for the following Tuesday.

It was too late on Thursday 17th Nov I took the call at 7.22am to say dad passed away peacefully in his sleep around 7am.

I'm am totally gutted but like some said greatful to God he's not suffering anymore.

On the other hand I have been wondering if the swelling in the foot may have been (DVT or Blood Clot) has the symptoms are very much the same and maybe this has something to do with his death and also why it was me who noticed the swelling and not the nurses at the nursing home :(

Even so CBD took my dads independence away the past 8 years and i am glad he's no longer suffering from this awful disease I would never wish this on anyone and I am here if anyone needs to chat or ask any questions.

Sorry if my spelling or grammar is not perfect been hard writing this and my concentration is not at its best.


Amanda xxxxx

Heady profile image
Heady in reply to Rologirl79

Hi,Amanda, please don't get hooked up on the whys and if's with your Dads ankle.

My Dad died some years ago, he had secondary Liver Cancer, but what finally caused his death was a blood clot on the lungs. Nothing was done about this, no anti clotting agent, ITU, anything. Not our choice. At the time, I remember my sister and I hoping that something quick would take Dad from us, to prevent the suffering we knew was about to seriously take over his body. Thankfully, he was spared the final months of cancer. I am not a religious person, nor was Dad, but I still give thanks, to who ever was looking out for him that day.

Thank you for taking the time and enormous effort, it must have taken to write your post. All of us are frightened about what the end may look like. To hear your Dads story, does give us some comfort, knowing that he didn't suffer.

Sending big hug and much love

Lots of love


Thank you for taking the time to share your experiences. All of us will identify with most of your description. My husband [ PSP] is finding it increasingly difficult to be understood. Like your dad he was such a lively , exuberant man it must be so hard to be trapped inside.

I hope you are all able to support each other through these difficult days.

All my love, Jean x

Sending you my condolences, your Dad is now free from the horrible suffering and you will eventually remember the good times.

Much love

Kate xxx

I am so very sorry to hear of your dads passing. sending you love and hugs xxxxx

Just an update: the doctor has confirmed cause of death was was due to the CBD and that also found was onset of PSP. They said he would not have felt anything at all as he was in a very deep sleep when he passed Thursday morning.

I am thankful to God he took him at the right time. I really did not want him to go onto the feeding tube. At least he was able to manage puréed foods and drinks right till the end xxxx

So sorry for your loss it’s an awful disease mum has taken a massive down turn and it’s so upsetting to watch I feel your pain x x

Amanda, receive my love. Patty 🌹

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