Father with CBD - anyone out there?

Dear all,

Thanks for taking the time to read this. My father, 69, was diagnosed with CBD about a year ago. For some years before that he had various problems which the doctors put down to a stroke or series of mini-strokes. They now seem sure it's CBD.

It's advancing extremely rapidly. 18 months ago he could have a conversation normally and get around, although he had difficulty moving his left arm. It's now at the stage he can't speak except for whispering one word at a time, and even standing up takes him a couple of minutes. He seems to retain his ability to think, but can't communicate or really move his head, eyes, or facial features.

It's so hard getting information because the condition is so rare. Also, since I live far away I only see him a few times a year, and getting information from my mum is a nightmare (I think she tries not to worry anyone, but it has the reverse effect). What I really want is just to see if there is anyone else out there going through this and what the future holds. Thanks.

9 Replies

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  • Sorry to say there are lots of us going through this, either as carers or sufferers. The future isn't bright but who knows what anyone's future is. Since my husband's diagnosis we have lost several friends suddenly through strokes or heart attacks. The PSP association site has information and the internet will tell you all you want to know. When you speak to your mum, I expect like me with my sons, she wants to hear what you have been doing to take her mind off the thing that is with her 24 hours a day. When folk ring me, the last thing I want to do is talk about PSP, I have enough of that with doctors, speech therapist, occupational therapists, district nurses etc etc. If you can't visit regularly you will probably notice a huge difference each time you do manage to see your parents but do keep in touch as much as possible. Ask your mum how they both are but she knows that you can't do much to help if you are not there so going into a lot of detail is pretty pointless.

    I know it's difficult for you not being near them and I'm sorry your dad has CBD. My husband is 67 so like your mum and dad, the retirement we dreamed about is not happening. All we can do is make every day count, do as much as health will allow however difficult it is and make as many happy memories as we can.

    If your mum can use a computer , direct her to this site. If she has the confidence to post here, you will find out how she and your dad are as long as you tell her you would read what she says.

    Best wishes

    Nanna B

  • Hello .. My wife is 67 and has some of the symptoms you describe although the progression has taken a completely path. 'Presumed CBD ' was the diagnosis about a year ago .. By that time Sandra could only get around by wheelchair Previously she had experienced numerous falls and could not use her right hand ( and right side generally was affected). Sandra is now ((since April) confined to a hospital bed at home .. She can speak normally .. has trouble with words and short term memory) In the last few days she has virtually lost the use of her other hand and can no longer feed herself She suffers from Crohn's which is an added complication. We have four care visits daily (two carers at each)

  • Hi I notice you are having carers in four times a day ,

    where are you living , and are you getting rehuoqr carers and do they arrive at regular times . .

    so far during eighteen months we have so far had 103 different carers

  • I am in Hampshire UK We have finally had a decision that Sandra is eligible for CHC (Continuing Health Care) so all the care visits are funded by the NHS .. plus respite breaks totalling 6 hours weekly for myself. The care is excellent .. I receive a weekly rota by e-mail stating the arrival times .. slight weekly variations ..but broadly 7am 12 noon 5pm and 8.30pm.. the visits are reasonably punctual, bearing in mind that we live 2 miles from the nearest village... Hoping we don't get snowed in over the next few weeks.. fairly unlikely in this part of Southern England Hope this helps. Graham

  • As I'm not an expert it's hard to give a diagnosis.

    I lost my mum 4 months ago and the coroners office still haven't given a diagnosis. Her illness spread rapidly, with her losing speech, being bound to a wheelchair.

    Based on what you're saying, I would let your Dad have all of his hospital appointments in the hope they can treat it or at least make his quality of life better but the best thing you can do is put a smile on his face by making those long journeys to visit him (I'm sure you do this anyway!)

    I done this for the past 2 years of my mums life-I live in Germany and she was in the UK but i saw her every month and enjoyed a great holiday just before she died.

    Should your Dad end up in serious bad health, it will make the grieving process so much easier, knowing you did everything to see him. Also don't get upset when you see him-smile, crack jokes, take him out for walks. When people suffer such horrible illnesses, it is family and kind hearted moments that make their life enjoyable!

    Al the best!

  • Hi boutrosboutros

    I'm so sorry to hear about your dad, I'm in pretty much the same situation, my dad is 68 and was diagnosed 18 months ago it's a horrible situation to be in.

    In my dads case, his left hand started twitching about 4 years ago, he's always done DIY around the house and had been sanding beams so we thought it was linked to the vibrations got that. It is now fairly useless and he can no longer use a keyboard, mobile phone, camera, knife and fork (I bought him a knork from Amazon) or wallet (he's tried lots of designs but can't slide cards out).

    His thought processes have also changed. He was an accountant and now can't do basic sums, he lead walks and now can't read a map and he stopped driving three years ago because his spatial awareness was failing. He is super forgetful but only specific things like place names or food stuffs.He can still talk but a bit more slowly and he mumbles a bit.

    He goes to Physio which he likes and which seems to help with some movements. He exercises his hand and does small jigsaws to try to keep his brain working.

    I live in London and my parents are just outside Manchester so like you I don't see him all the time but like yipyapstam I am now visiting much more, he is much better in his own house, he kept getting lost when they visited my flat! We've started putting together old photos for and in the new year I am going to record my parents telling some of the stories behind the photos.

    My mum and dad have a brillaint attitude and laugh a lot. My parents have a great circle of friends and my mums sister lives nearby so my mum has support there. She knows to ask if she ever needs anything but like NannaB when we talk (which is often) she wants to be distracted from the disease so we talk about what I've been doing or I ask her about her hobbies, any decorating projects etc.

    I don't think there's anything else you can do really. I read this chat room everyday storing away information for when he needs it.

    Its a horrid situation to be in but like everyone on here says, you have to take it one day at a time and if you're not sure look on here, there is so much information and advice here.

    Good luck

  • My husband was diagnosed with CBD in March of 2012. At that time he was having difficulty with neck and left shoulder pain and stiffness. He was also having pain and rigidity with his left hand and wrist, and at that time was pretty much unable to use it. Depth perception was also difficult..ie-going up and down the stairs.

    Fast forward to today-his speech has become slurred at times and is difficult to understand. Also, his voice has quieted considerably. He no longer uses his left hand which has become stiff and frozen in a sort of clenched position, the same has happened with his arm. His left leg also has diminished in strength and at times I believe that is what has caused most of his falls. His right hand has also become mostly useless but not to the severity of the left. He no longer can shower, brush his teeth or hair. He also cannot feed himself or is able to drink from a cup, he uses a straw. His has some short term memory loss but all in all he is the smartest person I know and others say the same as well. Walking is somewhat unsteady but he is still able to do so after being helped to his feet. I do find that he has the most difficulty with everything when he is tired. When something 'new' comes on with this disease I find that he leans toward the left, sometimes to the point that I have to prop him up with pillows and such to keep him from falling over. When this happens he seems to tire easier, is weaker, and sleeps more.

    He takes the normal meds prescribed for this disease...Baclofen, Clonopan, and something also for the tremors that occur when he is staining the muscles in his arms and hands, but it doesn't help anymore so we are going to stop taking it. He also takes a list of supplements; Magnesium, DHA, Cell Energy (holistic), ginkgo blioba, phosphatidylserine, and acety l carnitine which all help with brain/memory cells and function. Don't know if the supplements help, but that can't hurt. Our lives are much different that what was planned but we are still together, we love and support each other, pray and hope.

    Praying for a cure,

    Valerie

  • My husband was diagnosed with CBD in March of 2012. At that time he was having difficulty with neck and left shoulder pain and stiffness. He was also having pain and rigidity with his left hand and wrist, and at that time was pretty much unable to use it. Depth perception was also difficult..ie-going up and down the stairs.

    Fast forward to today-his speech has become slurred at times and is difficult to understand. Also, his voice has quieted considerably. He no longer uses his left hand which has become stiff and frozen in a sort of clenched position, the same has happened with his arm. His left leg also has diminished in strength and at times I believe that is what has caused most of his falls. His right hand has also become mostly useless but not to the severity of the left. He no longer can shower, brush his teeth or hair. He also cannot feed himself or is able to drink from a cup, he uses a straw. His has some short term memory loss but all in all he is the smartest person I know and others say the same as well. Walking is somewhat unsteady but he is still able to do so after being helped to his feet. I do find that he has the most difficulty with everything when he is tired. When something 'new' comes on with this disease I find that he leans toward the left, sometimes to the point that I have to prop him up with pillows and such to keep him from falling over. When this happens he seems to tire easier, is weaker, and sleeps more.

    He takes the normal meds prescribed for this disease...Baclofen, Clonopan, and something also for the tremors that occur when he is staining the muscles in his arms and hands, but it doesn't help anymore so we are going to stop taking it. He also takes a list of supplements; Magnesium, DHA, Cell Energy (holistic), ginkgo blioba, phosphatidylserine, and acety l carnitine which all help with brain/memory cells and function. Don't know if the supplements help, but that can't hurt. Our lives are much different that what was planned but we are still together, we love and support each other, pray and hope.

    Praying for a cure,

    Valerie

  • Hi. Sorry you are going through what we are here in NYC. My husband was told in the summer of 14 that he has CBD.

    I have seen many changes in the last 6 months and none of them positive.

    He has had many falls and needs help getting out of the chair.

    He is completely incontinent and needs help to sit on the commode as he just throws himself down.

    For the past two months he has started to hallucinate and does not recognize me as his wife.

    He has a lot of pain in his right hand and cannot hold on to anything correctly.

    He has been telling me lately that he feels as if he has something in this throat and seems to have a bit of trouble swallowing.

    He has been on Effexor for over a year. Tried the Exelon patch but stopped it as we did not see any change.

    He is now on Seroquel to help him sleep and it seems to help.

    He is in a memory program at a big hospital in the city. He goes every 3 months for consultation but they seem to be using him for their information about this illness.

    I don't know where we are with this and I am sad and frightened. We do not have any help yet and I am trying to do it all myself. Our sons are a big help.

    God Bless

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