CBD! : Hi everyone looking to support a... - PSP Association

PSP Association

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CBD!

support_sister
support_sister

Hi everyone looking to support a family member with any info you have on CBD. Whilst he hasn't been diagnosed with it yet, it heavily resembles his symptoms and situation! they have implied it but want to be sure before diagnosing him.

He's had so many tests and scans etc yet they still can't diagnose what is making him so weak and his muscles to gradually deteriorate like they have. He's finally succumbed to the the fact he is facing further deterioration and now he has dysphasia too which has come on in the last few weeks.

Maybe you can help with some answers how to deal with this?

7 Replies
oldestnewest

There aren’t any clear cut tests to really get an accurate diagnosis it’s more the combination of symptoms. Larry went through a year and half of tests before I took all the information to another neurologist who was a movement disorder specialist to begin to get an answer. First she said Parkinsonism then on the next visit PSP.

Its so tough for them. I think thats half the issue..they just cant get a diagnoses!

I think they have been trying now for over 3 years for a conclusion to all these tests etc but just cant find anything...they've seen the best doctors all over the UK even someone flew from the USA to give his opinion...still nothing!

SOOOOO Frustrating!

I'd start by starting to setup in home care, either family or paid carer. Look at what resources you have available in terms of help, I am not familiar with the UK health system but many on the site are. Get legal things taken care of soon as possible. Find out the wishes of the patient for things like life support, DNR, etc. Use the search feature to look for info or just plain old ask, someone will answer rather quickly normally.

Ron

I was lucky and the neurologist I saw spotted my CBD symptoms straight away and his diagnosis was later confirmed by a movement specialist.

I have learnt so much from the people here with the best thing that seems to help, is to get an exercise regime in place.

The only positive thing is that if your family member does have PSP or CBD there is currently no drugs to stop it's progression so they will not be missing out on any drugs.

Best wishes,

Patrick.

Hello Support Sister and Welcome to the site!

IMHO your best sources of information about the disease (in overview form) are the PSP Assoc of the UK, and individual historic post strings on this site (type a subject into the search window in upper right of the screen) There are 7 years of posts here. You can also Google a question but put Health Unlocked in to the query.

Has your brother been seen by a movement disorder specialist? Or a tertiary level neurologist? I've heard others mention specialists in London, Cambridge, Oxford and..? ( sorry I'm not in the UK..)

As others said, there's no easy test for dx. It's more ruling other things out. My hubby (dec. July 2018) had CBD but although suspected for 2 or so years by neurologists, they wouldn't even rule out Alzheimers for a long time - even though he had no memory problems!

As Bargie said, DO encourage physical activity for as long as possible. Also prepare for possible speech/language loss. Record his voice now so you have it. (I only wish I had:-(

Check out what supports ate available for daily tasks (bathing, tolerating, cooking eyc) and very very importantly, check out what respite support is available for the main caregiver. This usually becomes a huge and all-consuming job for someone in his life - so that someone needs to plan ahead for breaks for their health and sanity.

Ask away - we'll be here.

Wishing your family the best possible. XX

Anne G.

Sister,

As we always say to new people to the site, welcome, but we are sorry you are here. You will find a weath of practical information and emotion support here. You can find a lot of very good medical information at other sites on this cruel disease, but here you can find other caregivers who truly understand and can offer advice and encouragement.

As others said, seek addition medical advice. I was able to get my wife into a neurologist who primarily did research on neurological diseases. He was able to perform relatively new/experimental PET to better understand areas and levels of amyloid and tau proteins, as well as inflammation. They are also aware of experimental trials.

Wishing you and your family wisdom, strength, and comfort as you struggle with this disease.

Bobby

Hello. I am in the US so our experience may diverge from yours because of the health care systems. My husband had troublesome cognitive (memory, slow speech, obsessive-compulsive symptoms) and motor (tremor, increasing muscle spasms, balance issues) symptoms from 2006-2012; local physicians thought it was normal aging, but I used the internet to find a university teaching hospital with an accessible neurology clinic and that is where we got the initial but tentative CBD diagnosis. Researching further, I learned that the prominent researchers in the US in this field were at the Mayo Clinic in Minnesota and that is where we went to have the diagnosis confirmed . As others have said, it is hard to definitively diagnose and even then, it is truly confirmable only at autopsy, which many people choose not to do. I mean no disrespect, but many neurologists just "make it up as they go along," trying a little of this and a little of that, etc. because they just don't see many cases in their practice - and truth is, there are no cures. But because it can last a long time, (husband is now 12 years into it), my counsel would be to find the most informed and caring medical people you can find, as palliative care is hugely important in CBD, and to conserve finances, as this can be draining on personal resources.

PS I haven't seen much on this website describing the cognitive problems my husband has, but I have only been on the site about a month. Wish I had known about the impairments in thinking as my husband made some unwise financial decisions which I am still trying to undo.

Lots on good advice appears on this site.

Good luck to you and your family,

Marilyn

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