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PSP Association
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CBD

Is there anyone caring for someone with CBD that would be willing to chat to me about it? The consultant thinks that my husband has it but has not said more than that. I think it explains most of Bill's symptoms.

Thanks

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Hi kath psp and cbd seems to be so simular that when they talk about one it does aply to both deseases. Even the imformation from the pspa states it crosses over from one desease to the other. Hope this helps Janexx

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I have known people with Psp through the Parkinsons Society and it just seemed to progress so fast. Is it the same for CBD?

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I think you will find that it does. Brian was diognosed with psp August 2014 after several years of them saying it was parkinsons. but they now want to do some other tests because as much as he has got the lack of eye movement of psp he has got severe stiffness on his right side wich is more a cbd symptom and as they say the crossover of symptoms makes it very hard to distinguish one from the other.

The 1st consultant said all the blank spots on Brians brain were due to smoking.

Are you in england if so try cbd website or nhs website to find out more imformation. Janexx

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Hello Kathie. My wife has (presumed) CBD .. I read on this forum a great deal from those caring for partners and parents with PSP. Whilst there are many similarities between PSP and CBD, my wife's progression has been considerably different, nearly three years after diagnosis. Sandra has been at home in a hospital bed since March 2014. She is never hoisted out of the bed and has no motor functions apart from slight ability to lift an e-cigarette to her mouth. She does not hold the e-cig .. I have to wedge it between thumb and forefinger. Her mental deterioration has been mixed .. She can remember names and people but can longer have any meaningful conversation. She sleeps through the night with the aid of various mess. Initially she had falls, loss of balance etc. but we never progressed through a 'wheelchair' stage.. although this may have been because we live in a rural setting and there are no pavements within two miles of home. Please feel free to ask me anything you need to, although I am not sure if Sandra is typical of CBD sufferers .. She gradually lost the use of her right (writing) hand ..but carried on driving her car when she probably should have stopped driving some time earlier. Graham Breed (re Sandra Eleanor Breed)

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Bill's "progress" has been different but similar. I cannot work out what came first- cognitive impairment? Handwriting getting worse? Loss of balance?.......... Does your wife have alien hand? Bill's appeared very suddenly without warning.... Conversations are a thing of the past. He cannot read or write . Is your wife rigid down one side? Bill has his legs crossed over each other which makes changing pads difficult. He is in hospital at present and, although I love him to bits, I dread him coming home. I feel like a rat in a trap!

Sorry I should not complain.

But thanks for taking time

Kathie

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Sandra lost the ability to use her right hand initially but she disguised it for a long time .. She was still driving at that stage bug could not do things like PIN numbers r anything requiring precision .. She was still walking the dogs but started having falls .. CBD was not recognised at that stage and she had a brain scan ..then a lumbar puncture .. Her right side was mainly affected.. No cognitive impairment at that stage..she saw a neurologist specialising in strikes ..and he thought she may have had some mini strikes thought the probable cause was CBD .. Sandra's right hand is now clawed but her legs are straight .. She no longer has the ability to use her left hand and it is starting to claw but only gradually .. Her short term memory is badly affected although she can recited the names of all our grandchildren but keeps asking the same questions over and over as to which carer is coming next( we have 4 care visits daily..two carers on each call.. We had a six week period of live in care in June/July as I was recovering from knee surgery .. I get three four hour respite breaks every week as Sabdra became paranoid if left alone .. Even if I go to the garden .. J cannot leave her for more than a few minutes. She now has virtually total dementia .. It would appear that because the brain cells die differently and at a different rate there is no clear pattern of progress of the illness and do many variations in how the patient is affected. Hence the difficulty in diagnosis. Since being bedridden Sandra cannot be hoisted into a chair or commode.. She had OCD for quite a while and could not have anything in the bedside table and the metal cot sides had to have the padded cover pulled over them .. She panicked if she could see the metal.. Of the wooden bed end which had to be covered by a duvet cover .. The carers still do these things out of habit but the OCD has 'merged' into her state of gradual dementia where she is less aware of these specific things .. If it were not got the fact that Sandra sleeps throughout the night I doubt if I could cope with the grim daily routine which starts at 6.30 every day .. Medication before carers arrive at 7am by which time I have switched on TV given her her e-cigarette all umpteen things she is demanding at the same time .. I am 76 and Sandra is 68 hope this gives you s I tire of what to expect although it may be considerably different in your husband's case because of variations in the progress of the symptoms

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Thank you for your long description of your plight. Yes the symptoms have arrived in a different order but we seem to have ended up at the same place! Sadly Bill is just 62 and I am 5 years older?

Best regards Kathie

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Are you in the UK? If so, contact the PSPA, they cover both PSP and CBD. The support they can offer is very good, booklets to take to professionals, a specialist support person, group meetings, if there is one in your area. Give them a ring.

Lots of love

Heady

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You may want to join the cbgd_support group in Yahoo. I find it extremely helpful. Once you join, go to files. You will find even more helpful information there.

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Hi Kathie48

My dad has been diagnosed with PSP - but he has similar symptoms to your husband - right side is more stiff and he crosses his legs as well - he is on a PEG tube now (I don't think it was a good decision to put it in, though) - please let me know if you need any help or guidance

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Hi Kathy, I am a CBD sufferer and was final diagnosed in June this year. The diagnoses whilst being a shock was a relief because at last I knew what was going on with me. My symptoms began roughly 4 years ago and have recent,y began to gallop. The usual right hand (alien hand ) syndrome, falling, walking into things etc. It is now affecting my sleeping and eating due to severe coughing and at this time occasionally chocking on food and tablets. A tough road lies ahead how ever I am still using my left hand although this is beginning to give me trouble now along with my right leg so falling is becoming a regular occurrence so trips out are more of a problem now. I have a wonderful medical team, a loving caring husband and son who help and care for me and this great group who, although I don't write often are a wonderful caring help to me daily as each post helps me cope. I have no idea where CBD is going to attack next it certainly has an agenda of its own as I am finding out. A road we tread together. Love to you all, Lyn.

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Thank you so much for that Lynne. I am even more convinced that Bill has CBD and I am puzzled that they have not tried to confirm Bill's diagnosis. Physically he sounds like you but the dementia started first for him and he is not able to speak, read, write etc. but he is still in there and I get flashes of him from time to time. He is a lovely man and my soul mate as well as my husband.

Thanks for your support

Love Kathie

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Hi Kathie,

MY husband was diagnosed with CBD in 2013, although he had symptoms from 2010. He is 59 now.The disease has gradually progressed and now he can't do anything for himself anymore.He is in a wheelchair,hasn't been able to read or write for a long while now.

From what I have heard or read of other CBD sufferers, it would seem that everyone experiences the progression differently.

I think that I have learnt most àbout CBD from talking to others who care for those with the disease or from this site, or from experience, now.

We were also left in limbo when told from the Neurologist in 2013 of my husband's diagnosis. I read a lot of different things in the beginning but never told my husband, what was to come.

Of course I worry about the choking, swallowing thing which will happen but we will cross that bridge when we come to it!

If there is anything that you would like to ask me , please do.

Take care

D x

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Dear D,

It sounds as we are in a very Similar place. I understand what you are saying about learning from sufferers or carers this has been my experience with Parkinson's diseas. The health professionals, however well meaning, are not living the disease as we are.

Keep in touch

Love Kathie

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I meant to say Kathy that my husband crosses his legs too, especially at night and also I often have to prise his hands off of anything that he grabs hold of, even when he holds his hands together it us a struggle to prise them apart!

The stiffness sometimes seems to take over!

X

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Hi Kathie

My husband has CBD it has affected his right side he can no longer use his right hand.his body is stiff .he has'nt been able to walk for two years. if he is strong enough he can stand just to transfer but most of the time he is hoisted. he always leans to the right so i have to prop him up.he was diagnosed in may this year but his symptoms started about 5 years ago. i will try and answer any questions that you have

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hello Kathie

my wife has cbd.A short resume of her history. now aged 76 she first had problems holding a pen in 2009 and it was suggested that she may have carpal tunnel. had op but no improvement. october 2010 met with a new neurologist who sent her for mri scans and then to the royal free hospital for a dat scan in march 2011 when cbd was first mentioned but not finally confirmed until late 2011/12. Since that time she has slowly lost various movements. At present she has no use in her left hand and very little in her right - unable to walk without maximum support from myself or family members.her speech is virtually gone - understands but cannot offer a reply except for yes to most things. She has been in a hospital bed since february this year and we now have carers in a couple of times a week to shower which take some pressure off my daughter and myself. As an earlier comment made she does still manage to sleep well usually from 9pm to around 6.30 am. we are very lucky in our area - hertfordshire-and we have excellent visits from our T/O and the matron who helps to get the right medication in respect of any bed sores or bruisings following falls.Hope this gives some insight to cbd - remember this help out there please use it.

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Thanks for your insight and your time. We live in Wokingham, Berkshire. Which is one of the most tight fisted authorities in England so it is like trying to get blood out of a stone! But I will keep fighting on.

Love Kathie

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Hi Kathie,

My dad was diagnosed with CBD and I struggled to find information specifically about this and not PSP which does have some differences but this is a very helpful forum here. Many medical staff are not familiar with it. And do not worry if you need to rant and moan sometimes - you have to look after yourself and it is normal to want to let off steam! We all need to. My mum almost broke trying to look after him with me doing what I could to help and feeling guilty all the time. Do explore all the options for help that you can. My dad is now in a nursing home (he is 86) and has maybe had CBD symptoms for about 7 years although it's hard to know. He did develop a weakness down the left side (now very pronounced) and is now not able to walk and the dementia and speech has got bad. Similar things to what many have said but I think it's hard to see some good days and some bad as there are a lot of ups and downs.

Take care and hang in there,

Plum.

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They tell me at UCSF that my aunt bev also has CBD I was told not much different than PSP we see a new nuroligst at the end of the month hopefuly she can give me more than that sorry hugs

kryste

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Hi Kathie, I have just read in one of your posts that you live in Wokingham. I'm so sorry to hear about your husband having CBD and the lack of further information from the consultant. I live in Reading and my father was diagnosed with PSP in Autumn 2013. My parents live in Essex and I struggle to manage helping them from afar. I have attended a couple of PSP meetings near Andover which have proved hugely helpful but it's proving difficult with work to go regularly. As we are so close I would be very happy to meet at some point if you fancied it? I fully understand if that's something you'd prefer not to do, but if so please let me know. Thinking of you and your husband on this long fraught journey, love Nicky x x

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Hi Katie,

I was diagnosed with CBD after an MRI in June this year. It has been a huge relief for me to finally understand what had been happening to me. Don't get me wrong it was a shock but knowing all the horrid things happening to my right arm and leg were not a figment of my imagination was a time for me to finally understand and accept. Since my diagnosis the coughing and chocking have become increasingly worse and my voice has also become very gruff. I am now eating sloppy food, mostly Nutrit bulleted because it's far easier for me to do. So far I have coped but fear a Carer will be needed soon.........a very big fear of mine as I will slowly lose my independence........a tough one for me. My husbands job takes him to a country far away and I see him once every three weeks for two weeks then he is off again. As my condition worsens I am so hoping that he will be home more often. Just for today I care for me and it's tough. I will be willing to chat any time.........

Lyn.

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Hi,

My husband has recently been diagnosed with CBD. He is 58 and we saw things that weren't quite right about 2 and a half years ago. At the beginning things were v slight but we knew something was not right. Through sheer persistence we finally got a second opinion from a neurologist who diagnosed Pete. Same as others, horror struck but relieved as people think you are imagining unless you're with someone 24/7 in the early days. Symptoms more pronounced now and he gave up work in January. The right arm/hand etc rigid, doesn't work, can't write but has a strong grasp! Right leg now a bit iffy as is swallowing but at the mo, only slight. His speech is poor but we still converse with a great deal of patience. At the moment from what I read we are still enjoying a good quality of life but for how long. Only God knows...so we trust Him. We do everything we can for as long as we can but the future seems daunting. Just started the ESA application road??anyone have any advice??and any advice about anything??particularly with regard to cbd??He's just had a lumbar puncture to confirm the pathology?or so I've been told...We live in West Sussex and at present I still work, but again..Other symptoms are cognitive more, def one thing at a time!!can't deal with money or anything like that at all but still understands everything. Don't know if any of this rings bells??Make the most of every day and one day at a time but that is so easy to say but not to do. Hang on in there!!

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