Mum has been diagnosed with CBD.

[17052011]

After 3 year of tests, hospital appts, etc has now been diagnosed with cbd. She currently lives on her own and is falling quite often. Im afraid of what the future holds. Im sure im not the only one in this position. Just wondering what to expect the next few years, any advice?

[NannaB]

I'm sorry your mum has been given this devastating news. Welcome to the community. So much will happen in the next few years, too much to put here. I suggest you contact the PSP association as they can send you information although you will get a lot from others on this site. The main advice I would give to someone newly diagnosed is do everything you have wanted to do now, don't wait. If you can afford it, take mum away on a really good holiday. We did our one and only cruise and it has given me so many happy memories. We couldn't have gone a year after diagnosis. We also did a balloon ride.

Make as many happy memories as you can.

Best wishes,

Nanna B

[jillannf6 in reply to NannaB]

I agree with nanna b above

try and do what you can NOW rather than wait as the Psp/ or CBD WILL ONLY GET WORSE!

SORRY TO B BRINGING GLOOM ADN DOOM TO YR DOORSTEP - IA HVE PSP and i know !

lol Jill

[DenB]

Hi,

Sorry to hear of your mum's diagnosis.I know how scary it is when first diagnosed. You don't know what to expect, you read everything you can on the internet and still can't imagine any of it happening but it does.

My husband was diagnosed with CBD in 2013 after 2 - 3 years of tests, hospital appointments etc. He is only 59 this year and our lives have changed immeasurably since being diagnosed, which is probably true for everyone who is on this site.

The last year has seen the most changes in my husband.

Your mum will need lots of support but as others have said, try to do everything that your mum can do now.

My husband's Neuropsyciatrist told us just that,in the beginning ,and we didn't realised that he meant like, NOW when he said it!!

Time passes too quickly for CBD/PSP sufferers and their carers and we need to make the most of the times when things aren't quite so bad!

If you need to, or want to ask me anything at all regarding my husband's journey with CBD that might help you to be a bit more prepared for what's to come, please don't hesitate.

Love to you both

Den B

[Rologirl79 in reply to DenB]

Hi Den

My father has CBD and I am trying to find out where my dad is upto with this dreaded illness.

He's had it around 8 years I know he's in the advance stages but his mind is all there and I just don't know what to expect next.

He can't walk and is in the process of an electric wheelchair, his speech has gone more or less, he can walk with out falling. He has a care package but not 24hours.

I'm need to know what's going to happen next or is this as worse as it gets.

Mandy x

[DenB]

Hi Mandy,

So sorry to hear about your dad.my husband has probably had CBD for about 5 years, from the onset but only diagnosed in 2013. This last year he has deteriorated quite badly.he has lost the ability to walk or do anything at all for himself. I have to do everything for him now where as this time last year he was still walking a little and much more in dependant. His speech is quite difficult at times , he can't take instruction....he would never have been able to use an electric wheelchair. His mind is not good, he doesn't understand things at times and can get very difficult. I am not sure if he has onset dementia but it does seem like it at times by his behaviour. I do all the caring for my husband but I have been told that I should start to sort out a care package for him.we are in the process of sorting out a tracking hoist for transfers and he has had a lot if falls in the past 6 months or so.

Some days are better than others.

He goes to a Hospice for rest bite care, one day a week, which I am grateful for, it does give me a break.

They do say that not everyone suffers exactly the same with the symptoms For CBD or PSP. You say that your dad's mind is all there but I wouldn't be able to say that about my husband.

Have you read anything about CBD? One of the things which we have to be aware of is that they eventually have trouble swallowing and will have bouts of pneumonia.

By the way my husband is 59 this year, how old is your dad?

I try not to think too much about this time next year and try to make each day a good day, if I can , which is all we can do really.

Make sure that you and your dad have some good days together .

Have you thought of joining the PSPA. They can be very supportive and answer any questions and give lots more information about this awful disease.

Keep in touch

All my good wishes

Denise x

[Rologirl79 in reply to DenB]

Hi Denise

Thanks for your reply.

59 is so young. My dad is 71 he was diagnosed I think about 65.

He was totally mobile up until last year he started having falls here and there nothing serious but the last 3 months has been bad.

Last week being the most serious where his leg give way and he fell against a sharp wooded unit braking his nose and all above his eye. My dad mobility is deteirating fast but he's adamant he can still walk (which he can't) he his now in the process of moving into a sheltered accommodation with his care package but there is no care at night but he's adamant he can live alone.

At the moment me and family are having him stay with us as he's been a lot weaker since coming out of hospital last week.

My dad has Botox injections in his arm and I think this has made his balance a lot worse.

The really upsetting thing for me is that he is all there and he knows what's happening to him but he thinks he can fight it.

I'm really scared of him being on his own as the next fall may be fatal but he won't listen and says once he gets his electric wheelchair next week he will be fine at night.

This is why I'm trying to find out what's next.

So at the moment he can hardly walk, arm and leg both affected.

Speech is Badly affected.

Noticed he can't drink his drinks as fast and has a dry cough.

It's really getting me down I just wish I could do more.

I'm gonna defiantly call the helpline and get some advice. Glad I have found this site.

Regards

Mandy

[17052011 in reply to Rologirl79]

Hi mandy you sound like your going through the same thing as me, except my mum is livibg on her own at the moment. I live in a very small house and its not practical to have her live with us as bathroom is upstairs and she cant do steps. I think she needs more care, we are just waiting for the occupational therapists to come out. Maybe they will give a referral for more daytime care once they see how she has deteriorated sibce they came out last.

[Rologirl79 in reply to 17052011]

It's really hard. How old is your mum. I found it quite hard too as I have 2 boys age 3 and 9 and dad staying with me until he moves to his new sheltered accomodation.

Trying to do school runs, care for my dad and work from home is hard as I run a kids entertainment company so I been feeling quite stressed. He's actually been a lot better today. Been helping him walk and just trying to keep him positive.

I'm finding having a conversation with him the hardest as I cant understand him :/

Where abouts do you live? Are you in the UK?

[17052011 in reply to Rologirl79]

Hi, I live in Liverpool. I have 4year old twins and work full time, so I understand what you mean about trying to do everything! it can be very stressful. my mum lives in sheltered housing and we have adjusted the flat to try and assist her best we can, but she still has many falls. Don't know how much longer she can stay there for. Will your dad have carers?

[Rologirl79 in reply to 17052011]

Your not far then I'm in Warrington

Dad currently has a private carer who is with him 6 hours a day and me and my family take in turns helping when there is no care.

He has just been referred to have an electric wheelchair made so this will be made to suit his new apartment.

Dad been falling lots past few months last week being the worse totally smashed his face.

We're looking at night care now too as like you I don't know how much longer he can live on his own.

My dad is fully there is his body that's braking down and I see it's making him depressed as he use to me so active.

I have contacts for social services etc they been amazing and they sorted everything for my dad inc his care package which he will take with him to his new flat.

also the disability partnership who help with payments and also equipment etc.

Feel free to message me anytime

[17052011]

Hi thanks everyone for the sharing your stories with me, and support. Mum has had anothef fall, I dont know how many times this can happen before she neds to go into full time care. I know if I suggest it, she will say not yet. But im worried shes going to hurt herself really badly.