I'm really struggling : we found out my... - PSP Association

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I'm really struggling

8 Replies

we found out my husband has CBD in April and has probably not been well around 4 years.

He has recently had to finish work as he couldnt carry on any longer. we hv a board to keep him busy imn the day wholsy im at work.

He has always liked a larger nothing more than that but gets tipsy really quickly. He had a bit of a meltdown today about how he feels so poorly but hving a drink makes it all normal. i just dont know what to say to him to help him.

we just seem to be left to it since we had a diagnosis. he has lost all his spark and is really anxious about everything.

What can i do to help to i need to gev the GP to see him again.

8 Replies

Hi Kaka

Welcome to a supportive group - this forum.

I'm sorry you have to be here and sorry - it can be a struggle, but with the right support it is do-able.

What country are you in?

Do you have a Neurologist involved?

It makes a lot of difference to resources and guidance on accessing them.



in reply to Kevin_1

im in leicester in the uk

we hv a neurologist but not due to see him until april.

my hubby cant see any wrong in hving a beer but i kno it dosnt help even if it is a normal feeling. im just lost atm

in reply to Kaka1234

Hi Kaka1234

Gosh you sound like you are a little abandoned at sea.

Please get active. Caring is lonely and it can be physically and emotionally exhausting. With forward planning and practical support it is do-able.

First off - do you have family support. Even if it is just emotional or a little sitting so you can get a break?

I don't know what stage your husband is at. Can he walk and use the toilet?

Are there risks of falling? Does he need you do do a lot for him. Seeing the G.P is a good idea, but you need to go with a plan. There are many here who will suggest things, but they, like me, will need a bit of an idea about his level of need and what risks need managing. A risk might be something like he tries to do things on his own and falls, or puts himself in danger with impulsive actions, like driving, or trying to get up and down stairs when he can't.

Sorry abut all of the questions, but answers come from questions.

The beer thing. I would worry if he needs help toileting, or help getting up to bed, if he get's unsteady after a few beers. The added unsteadiness would put you at risk of hurting yourself, perhaps. If there are problems stemming from extra demands being made on you, or him putting himself at extra risk from falling for example, then perhaps you need to talk it through with him now. Agree safe limits etc.

Its easy for me to say all of this from some miles away, but I know how tough all this can be.

He needs to know that if it is not do-able for you then the whole carer thing will crumble. We can only be effective carers if we look after ourselves first.

There are many good people here with much experience. We all had to learn and I for one am only coping now because of the support and advice I received from this site.

So do come back and let us all help.




Hi Kaka 1234

I havent been on this site for quite some time, my mother in law had CBD and passed suddenly this past Febuary.

We too had a rough time finding a diagnosis, she was weak, always felt like she had something in her throat making talking a challenge, she would loose her balance and fall flat on her back and had to get stitches a few times. She would shuffle when she walked and FINALLY after 3 years of specialists my doctor suggested she go to a movement specialist. That is where we received the diagnosis.

I am the type of person that needs to have answers, when we would ask how fast CBD moves we were always told that every person is different.

After breaking her ankle in a fall off her med (another side effect of CBD lashing out in your sleep) she was referred to a rehad facility, it was a day after being released that we had to face the reality that she could no longer live alone, this was before the diagnosis becuase you see, it took 6 months to get into see the specialist.

From that day we had to hire 24 hour care for her and ultimately put her in a home. Her mobility was non existant, she could not eat on her own very well and speach was more like charades.

I am giving you this information because like you, we were left with a diagnosis and nothing else. That is when I found this group, and everyone here got me through many dark days.

I would suggest to tackle this head on, get all the help you can that way you can spend quality time with your husband.

Peace and Hugs to you



Hi P

Waiving and sending hugs from us both here.

You are far from forgotten.


Kevin and Liz


Hi Kaka

My husband also had CBD. He must have had it at least 4-5 years before he was diagnosed with Parkinson's. He lost ground quickly in the last 6 months - so fast that I could see the decline (but Dr did not pick up). During that time he had great difficulty walking, toileting, keeping a normal BP, and supporting his upper body. Changes happened quickly and unexpectedly and seemed to coincide with a 'spaced out' and sleepy phase.

Inability to sit without support, is. completely floppy, as in back muscles not working, meant I did not have facilities to cope at home and he was admitted to hospital.

Within the first fortnight he was unable to toilet himself and went into diapers. Still don't know whether he was incontinent at that stage. Then he lost ability to hold knife and fork, to read (his fave pastime).

After that he got pneumonia and went down fast.

As others have said, the rate of progress in each person is different. Our ride was quick!

Diagnosis was only in the last 3 months and still the Ward Dr remained adamant it was Parkinson's and that he thought he had another 12 months to live. At that point I disagreed with him and fought for what I felt my love needed to be comfortable.

You will find that you probably know better than Dr with this disease! So fight for your love to get his comfort needs, and use this site to get more knowledge of what you may have to face. The number of people here with CBD has grown quite a bit since I joined so there is info here!


Jen xxx

1 like

Hi my mum was diagnosed with CBD lady year.

Unfortunately it seems to be common that people are just left in limbo and support not offered. Our starting point was to contact the PSPA helpline. They sent out lots of information and put me in touch with the area advisor. Who gave me a call to discuss the situation and advised me who to get in contact with to get ball rolling on getting help in place. This will be social worker if care needed, OT for equipment to help in the home. The GP can assist with referrals also to more specialist nurses if needed such as incontinence or speech and language therapy, district nurses. .

The neuro team should have a point of contact for you also, normally parkinsons nurses before you see the neurologist again. If you have the neurologist consultants details get in touch with their secretary asking about it.

My advice is make contact with as many people as you can early on after diagnosis so you have them there when needed.



Welcome to this site. My husband has PSP and I remember how isolated we felt. It is good to hear how others cope, round the world, share your despair and get tips on dealing with unexpected issues. Have a laugh too.

I do empathise with your husband. I now have a glass of wine or a G/T every night. It would be too easy to drink too much and needs to be addressed.

Chris used to go a couple of days to the day group at the Hospice. I would suggest you find out what is available. Your GP should also help with this.

love Jean x


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