Would a GP have accurate information about life expectancy of someone with CBD?

[Jan6]

Hi everyone,

I'm wondering if anyone has any knowledge that could help me. My mum has been suffering from Corticobasal Degeneration for a few years now. She was diagnosed 2 years ago. She had a brain scan about 2 months ago and we were told that the results were "as expected".

However over the past month she has unfortunately deteriorated so rapidly. A few weeks ago she could walk into her local village, albeit very slowly, however now she can hardly even stand up. Her falls have landed her in hospital numerous times over the past couple of weeks. A month ago I could hold a proper conversation with her, but fast forward 4 weeks and she is talking nonsense about 80% of the time now. She is having violent hallucinations, is convinced she is not in her own home and frequently doesn't know who she is or where she is. Plus over the past 2 weeks she's started having convulsions, with her eyes rolled to the back of her head. So all in all, the past month has been pretty horrific and incredibly stressful.

The reason I'm writing all of this is that my mum's GP has said that mum has less than a year to live.

My question is whether this announcement of mum's life expectancy could be based in any way on fact (i.e. the results of the recent brain scan) or would this be pure speculation on the part of the GP, based maybe on mum's rapid decline over the past few weeks?

If anyone has any information I'd really appreciate it.

My dad was so shocked when the GP said this "she's got a year" statement and I wanted to say to Dad that there is no way of knowing and that he doesn't have to start thinking that this will be Mum's last Christmas etc as there is no way of anyone knowing, but then again I didn't want to tell him anything without having some facts. So as I say, if anyone has any idea at all as to whether the GPs statement could be fact based or is pure speculation I would really appreciate it.

Thanks in advance, Jan x

[hmfsli]

I'm not sure anyone can say with accuracy when someone is going to die. They can only go on probabilities. In 2009 the neurologist told us Mum had a life expectancy of 3 years and she is still with us. Your GP probably based his prognosis on your Mum's recent rapid decline but the only thing we can say with certainty about PSP and CBD is that they are not predictable. It may be worth giving the GP a call and ask him for his reasoning though.

[Hidden]

Hi Jan

So sorry to hear of your mum's condition, it must be very stressful for you and family. A quick answer to your query would be that not even a neurologist can predict with any certainty that your mum only has a year to live. With conditions like CBD, there can be long periods of a slow downward progression followed by a rapid decline (sometimes called end stage). Others will have a "serious event" (like a fall and be in hospital), then decline, but then have a plateau until the next event. So, it's difficult to predict with any certainty. Many carers on this forum will tell you that their doctors gave a time of survival that was often completely wrong.

If the diagnosis of CBD is correct, the brain scan (MRI usually or PET scan) can only show regions of atrophy or "underfunction" (FDG-PET scan). They cannot predict survival from these scans. The usual CBD sign on earlier scans is the cortex showing more problems on one side than the other (asymmetric), plus possible focal defects. A PET scan will show "poor signs" in the cortex plus basal ganglia area (connected with dopamine neurons) - hence the name Cortico - Basal - Degeneration. (If she has severe visual hallucinations, a PET scan is often abnormal in the back of the brain - the occipital lobe - where vision is controlled).

Just a couple of thoughts. Hallucinations can occur with CBD, but are rare. Seizures/convulsions are also rare.

There can be overlap or a misdiagnosis with some conditions. It's possible that the original diagnosis may be suspect, or there may be "elements" of other similar diseases that have developed alongside- like Lewy body dementia or FrontoTemporal Dementia (that has a type connected with behaviour - Pick's disease).

Hallucinations and other symptoms can result from certain medications.

It is still possible that your mum's rapid decline may mean she is reaching end stage (but even this has been known to be from months to a couple of years). As we often say on this forum, we take it a day at a time, despite the difficulties. It's hard - very hard - both on the sufferer and family. I can only wish you the best, and know you will try and comfort your mum (and your dad!) as much as possible.

Take care

[jimandsharynp in reply to Hidden]

Strelley, Thanks for your reply. I think many times medications can be the cause of hallucinations as you mentioned. I'd check that first.

Jimbo

[Frosty]

UTI's can cause hallucination .

[Jan6]

Thanks for all your replies.

I've done so much research into CBD over the past couple of years and to be honest think I probably know more about it than my mum's doctor. This is why I was confused about her giving out a life expectancy as I was fairly sure that this could not be determined at all. So thank you for confirming my suspicions. I can now happily tell my dad that this is NOT set in stone and that no-one can tell us how long mum has left, so we can carry on just living life to the full everyday, making sure mum feels as loved and secure as possible.

I will also ask the doctor about doing a UTI test in case that is causing the hallucinations and also see if we can see the Neurologist again asap with regard to the convulsions etc.

Thanks again. It's so comforting to know that dad and I are not completely isolated and that there are other people in the world that understand.

Jan x

[jimandsharynp in reply to Jan6]

My advice is to check the medications she is taking and the mix of medications. These might be the cause of the hallucinations.

Jimbo

[jimandsharynp]

Hi, CBD and PSP are similar. There is no way to tell when a person will die. Let's face it, they could get aspiration pnumonia tomorrow and die or in a week or month. To make that diagnosis at any point is invalid and, to me, irresponsible. Beware of anything with CBD or PSP that is based on a MRI or brain scan. If they cannot diagnose these diseases by MRI or brain scan how on earth could they predict length of life? As mentioned the only way to tell which disease is by biopsy of the brain after death. I'm reminded of the women who thought her husband had CBD but at death she found out it was actually PSP She wrote the book "Finding Meaning With Charles" (I believe that is the title). Why worry about how long the person has to live? Why worry about the "stage" they are in? Death is unpredictable. Just ask the many cancer patients who have outlived the prediction of how long they will live. Live one day at a time is our motto.

Jimbo

[Jan6 in reply to jimandsharynp]

Thanks Jimbo. To be honest I'm not worrying about how long mum has let. There are way too many other things to worry about! Mum's GP just blurted this 'information' out to my dad unexpectedly. Dad had not asked about life expectancy at all. In fact this was the first time that dad had been confronted with the fact that mum is dying. Obviously he realised this a long time ago, but this was the first time someone had said it out loud (and rather bluntly) to him. So this is why I was so shocked and surprised. And yes, I agree that it was very irresponsible of the GP to have just blurted this 'fact' out to dad. We are definitely living each day as it comes. I am just so grateful to everyone that has answered my question. At least I can go back to my dad now and tell him that the GP is as clueless as the rest of us and that he should not take to heart everything she says. Thanks again. Jan x

[berry44]

Hi Jan, my husband has recently been diagnosed with CBD, we had never heard about it, I am in the process of trying to get information but don't really know where to start. I was interested to read your post and replies. Thanks

[Jan6 in reply to berry44]

Hi there, am so very sorry to hear about your husband. I know I was knocked for six when mum was first diagnosed.

I guess finding out about the disease is a personal choice. I ploughed ahead and got every single piece of information I could (Google is a helpful and frightening tool!) My dad however, chose to know nothing and just to 'muddle through' each day. This has worked for him. So I guess it is up to the individual person as to how much they want to know.

I found the PSP Association incredibly helpful and sent off for their information pack (pspassociation.org.uk/getti.... This is packed with helpful info. They will also send a special Medical version to any GPs or other specialists that you ask them to. My mum's GP and the local mental Health nurses said they found it really helpful as they had also never heard of the disease at all. There are also loads of Carer Group meetings held around the country. I went to one but found it too upsetting at the time, but again, each to their own, obviously loads of people do find them really helpful.

I would say to make sure that you have a good support network. I would probably have cracked up without the help of my friends over the past couple of years. Just make sure you can get stuff off your chest and don't let things get bottled up. I find it so cathartic to just do the whole 'it's not fair' rant every now and then. You really have to look after yourself as well as looking after your husband. The nurses that go to see my parents frequently say to my dad "The carer also needs a carer"! So make sure this situation doesn't completely overwhelm you and your time.

As you've probably read, my mum is in a pretty bad way now, but up until a few weeks ago she was doing ok. We could still go out for walks in the country, go round the shops for an hour etc. And you just have to remember that every single person is different. One person with CBD will have different symptoms to another, and the extent of those symptoms will differ.

After the initial shock of mum's diagnosis, I admit I was very depressed for a while. but then I realised that she IS still alive and that I need to make the best of every single moment I have with her. We have probably enjoyed each others company more over this past couple of years than we ever have. We laugh more and don't let the little things bother us anymore. As hideous as this disease is, it's been lovely having this time with her, knowing she won't be around forever. We have had the time and inclination to say all important things to each other.

I wish I had a magic wand and could make this disease vanish. Again, I am so sorry that your husband has been diagnosed with it. I am here if you need to rant. Sometimes it's easier to rant at a stranger You'll have good and bad days in the future and unfortunately is IS a very hard situation to have to deal with everyday, but this forum (and others like it) have been really helpful for me. It's good to know that you are not the only person going through this and that there are (sadly) a lot of people out there that can relate to you and will understand all the crazy emotions you're going through.

I hope i've been a tiny bit of help to you. Feel free to message me if I can be of any help.

Take care, Jan x

[berry44]

Thanks Jan for your help and support, so sorry about your mum it must be so hard for you all to deal with, we found it hard. At least now we have a diagnosis so know what we have to deal with. At first we were going for tests? A stroke, which it proved not to be, it was upsetting and frustrating not knowing what the cause was. We have a good neuro hospital here in Liverpool and our consultant seems to be very good. X

[Hoagy]

I am currently 56 I have cbgd and I an sure I have had it for about 1 1/2 years. I just started going to a naturalpath doctor to see if he can help me. I may be wasting my money but I been told the medical association can't not help me. I know I have nothing to loose except money.

[Hoagy]

My understanding that the life expectancy is about 8 years from the onset. Might be less may be more. I hope when my quality of life gets very poor I will pass. I feel so guilty for letting my wife and family down by getting this decease.