My husband was diagnosed with CBD a month ago. I am reading that the life expectancy is 6-8 years. Anyone out there have better news?

[cbsmom1]

[dorothy-thompson]

Hi Cbsmom1

I am sorry to hear that your husband has CBD, my husband was finally diagnosed with PSP in 2010 but like many others on this site, it goes back much further.

From much of the clinical data I have read, PSP has a life expectancy of 8- 10 years, so he is in his 8th year now. As you watch the deterioration of this disease, believe me, you will not want it endure.

Kind regards

Dorothy t

[millicenthatton]

I agree with dorothy-thompson, my father was diagnosed with PSP 14 years ago, and is now nearly 89, after being given a prognosis of 5 to 7 years. I just wish his suffering would end not go on.

[jillannf6 in reply to millicenthatton]

hi all

i ha ve PSP and was dxd in dec 2010 so am suppose dot hav e another couple of years - but i have the slow sort i am pretty sure so since symptoms started i may have another few years yet '' and shall try and get something out of every day while ti can

i am hook don some games at the moment i.e. solitaire (traditional and spider) candy crush pet reduce farm heroes etc all of which i intend to do as long as i can silt see1

lol Jill

[LynnO]

cbsmon1,

Sorry to hear about your husband. My husband possibly has PSP. He's probably in his 5th year. So far holding his own, though the disease is progressing. Each person is so different in the symptoms and progression of this disease, I believe the time frame that is given is at best a guide line. From what I've read, you can live a lot longer, though as other's have stated depending on the quality if life, that can either be a good thing or not. I'm also thinking that the age of onset and health (other than the PSP/CBD part) have something to do with it too. I would read up as much as you can about CBD to be prepared, but not to dwell too much if possible. It's not going to change anything. Just enjoy everyday you can.

One day at a time!

Lynn

[jillannf6 in reply to LynnO]

HI LYNNO

Is your husband ok with getting around on his own/

i have PSP too and cannot go out on m y own any more ask tend 2 fall over a lot

(And am using a wheelchair 4 outside now as well)\

but since my dxd 3 and half yrs ago am doing pretty well and did not think originally i would ge tot my 70 birthday but now i think i will ( in 18 months time)

so there is no pattern to this illness other than we are a lll unique with it and my speech has gone a lot worse but my swallowing not

i cannot do up buttons and zips and cannot sign mhy own name neve mind write anything legibly and my typing has gone v dyslexic

but i AM GOOD!

LOL JILL

[Hidden]

My dad has CBD and from the little I have found to read, I would say that 5-10 years seems common but like everything, it varies and it's sometimes hard to know when the symptoms started. I think my dad (almost 85) has probably had it for 6 or 7 years. Early on, he found getting from a to b very difficult and now that the Parkinson's element is much more pronounced, with a weakness in one side, his spatial awareness is also very poor. However, there are a lot of ups and downs and the ups are good to see. I hope you are finding out about what help is available as you need to look after yourself too. I got so worried about my mum doing everything. Dementia plus all of the physical effects (dad can't walk any more) are so hard to manage. I read that often it's a secondary infection, particularly pneumonia or related to swallowing difficulties that can be the problem in the end. But hang in there. Plum x

[jimandsharynp]

cbsmon1, There isn't much better/good news with these diseases. They just take and take and take from the patient. Of course a firm diagnosis of these diseases can't be made until autopsy at death. I'm reminded of Jannet Edmundson who wrote the book "Finding Meaning With Charles". He struggled for years having been diagnosed with CBD but autopsy at death indicated it was actually PSP. These diseases are so similar and caregivers and patients go through much of the same symptoms. I've read, and I do a lot of research, that length of life can be as much as 12 years or as little as 1 after diagnosis. Why? Because that patient can die from a bad fall or aspiration pneumonia or many other symptoms in any stage. My thoughts are to not waste your time on trying to determine length of life. You'll probably be wrong anyway. Same with "stages". Stages don't matter because, like most life, you aren't in control. That is one of the sad things about these diseases. You struggle along not knowing what's coming next or how long the loved on has to live. So, I say concentrate on only today not looking forward or backward. Just live in the moment and you'll be much better off. Again, you aren't in control, CBD, PSP, or MSA are in control along with a higher power than us. Now is the time for you and your husband to go and do whatever you've always wanted to do. Believe me, a time will come sooner than you think when you won't be able to go and do as you like. The years roll by quickly. I'm sorry you and your husband have to suffer through this terrible disease and wish you the best. As I mentioned I have done a lot of computer research and can help if you need it. We, on this site, are here for you so ask. Jimbo

[jimandsharynp]

I forgot to mention my famous phrase (famous by me) "PSP, CBD, and MSA are not a one-size-fits-all diseases. Each patient is different in some way. So you can't hang your hat on what another patient has experienced or what may have worked for them. You can learn from their experiences but just remember your patient and you are unique". Jimbo

[carolinesimmons]

I expect my husband had had the disease for years before he was diagnosed. He was able to explain away any symptoms. He died 2 yrs. after diagnosis. Is this good news or bad for you?

Caroline

[Heady]

Hi cbsmom1, I agree with all the other replies. The only certainty in life, is we will all die. That was determined the day we were born, the only uncertainty is, we don't know the date! I'm afraid that is the case with PSP/CBD or any other disease or cause of death. Just because your husband has CBD, isn't doesn't mean he will die of it. None of us ever know when that bus is going to come roaring around the corner.

We all understand your frustration, everyone on this site has days when this really matters, especially at the beginning! You WILL find that these days, start to get fewer as time goes by.

The only thing you can do, is live each day as it comes and deal with all the little challenges that get thrown your way! Unfortunately, as those challenges grow, you will stop worrying about time scale. I am afraid your lesson for today is to learn our mantra " One Day At A Time!!!" Try to organise your day, plan things that you must do, exercise for your husband, doing something nice, go out for lunch, or when you go to the supermarket, make time to go for coffee. Night out in your favourite restaurant if you can still do that. Find places that are easy for your husband. Garden centres are great, interesting things to look at, toilet very close and they all have cafés! Sorry if that sounds depressing, the most exciting thing to look forward to is a trip to the garden centre, try the local Mall, nice and flat, warm and dry and you can leave him somewhere comfortable and go shopping!!! ( you might get 5 minutes!!!) Life has changed for you, but it changed ages ago, you just didn't realise.

You do get use to it, I promise, life will settle down into some sort of routine, it just will be different.

Please stay on this site, we will help you through the tough times, share any good one you tell us about, most of all, you will realise that you are not alone, you do have a huge shoulder to lean on, ours!!!

Lots of love

Heady

[SharonAB]

Dear CBS,

Yes, there is better news out there and there is is worse, however it is all very subjective. For it gets down to date of diagnosis and how long your husband has already had the disease (which is not possible to predict) and if the diagnosis is right (which is clinical and not possible to be 100% right..). So even if your neurologist is the most skilled there is - there is an element of doubt and it could be lesser of evils and your husband could still be bouncing along in twenty years time (yes - rare) or he could take a downward slide of no return next year (possibly unlikely)....

So my suggestion to you is take a few pages out of your expandable diary and leap forward a bit and think of what you and your husband want and can do and enjoy. Rather than putting it in 'when we retire list', place it in the 'when can or when will we do it list'.

Regards,

Alana - Western Australia

[Hidden]

My mum has CBD ad her neurologist recently told us the average life expectancy with CBD, from diagnosis, is 5 years. In other places I have read 5-10 years and also 6-8 years. I guess it's variable. My mum was diagnosed with Parkinsons 5 years ago although she started seeing doctors for a 'frozen shoulder' 6 years ago. It took the doctors about 3 years to be convinced that it was CBD even though her symptoms seem to me to have been classic CBD from the start. She has gone downhill very rapidly in the last 6 months and especially in the last 6 weeks, when she was hospitalised following a fall. Her speech is now very hard to understand, she sleeps probably 20 hours a day and is pretty unresponsive for a fair amount of the time she is 'awake'. She now has dementia and struggles to chew, swallow or suck through a straw when she is not fully alert. She has lost most of her mobility although is just about using a standing aid hoist to transfer to the commode. Still continent during the day but not at night. The doctors told her they would be surprised if she is still around in a year's time but obviously can't be precise on the speed of the decline. My mum is 84 so the doctors are quite clear that it would be cruel to give her a feeding tube when she can't swallow any longer and have encouraged a DNR. A really horrid disease and I'm so sorry that there is nothing very optimistic to tell you. Good luck and I hope you have some good support.

[cbsmom1]

Thank you everyone for your replies and well wishes. I hate that he has this for him and for my kids who are only 19 and 16. My biggest fear is that they won't remember him before the dimentia. We are trying to make every day precious. Traveling is just not an option for him right now because it is so confusing for him to be away from his surroundings. We do short overnight trips but that dream trip to Ireland I don't think is going to happen. My heart goes out to all of you dealing with this - patients and caregivers alike.