Question about CBD condition

[CLP71]

I understand that CBD is a neurological degenerative disease, butI also read somewhere that CBD is a form of dementia, and then somewhere else that it is a Parkinson’s Plus disease. Are there overlaps then between these and is it a combination of both? I’m a little confused.

[honjen43]

Hello CLP71 and welcome to this site!

Yes, this was my first question - and there are definitely overlaps with symptoms - even sometimes a combination of the rare diseases mentioned below. My husband's specialist went to great pains to help me understand just what the diagnosis of CBD meant!

I have a piece of paper torn from a very small notebook he carried where he wrote for me:

(My husband) "has features of - parkinsonism (but it is not Parkinson's Disease;

-dementia (but it is not Alzheimer's)

Likely diagnosis is Corticobasal syndrome"

(specific to my husband's case) " - from multiple white matter lesions in the frontal lobe, - the lesions are probably ischemic..."

He also mentioned a frontal meningioma which had also been discovered. No one seemed too concerned about the lump and they planned to check it again in 6 months.

As I understand, Parkinson Plus is an 'umbrella' that covers a number of neurodegenerative diseases that include CBD, PSP, MSA, FTD and a few other rare diseases of the neurological system. CBD and PSP feature prominently here on this site! There is knowledge and understanding here where often symptoms are generally not recognised so easily at the doctor's visit, although they are becoming more recognized.

There have been some recent references to excellent articles that describe all in detail. If you use the "search" tool on the PSP Association site you are likely to find them. It has also been suggested to print them and give to your GP if he lacks that knowledge.

People on this site live with and care for loved ones with these diseases, and some who have been diagnosed with them post of their experience living with them. There is knowledge on how to deal with daily incidents and occurrences that has become a lifeline for so many of us while we need it, and the first place we look for answers!

Some, like me, stay around the site even after our loved ones have passed on, knowing there will be others as frantic for information as I was in the beginning.

Big hug

Jen xxx

[raincitygirl in reply to honjen43]

You're the best, Jen - great response

[enjoysalud in reply to honjen43]

Thank you.....clear and concise....easy to understand.

To me, the term "PARKINsonism" is used when the neurologist does NOT have enough information to give it a "name" (not sure what he/she is dealing with).

When I was new to my son's condition (which ended up being designated as PSP) either I "heard" Parkinson's (rather than "Parkinsonism") or the neurologist used the term Parkinson's. Even today I read on this site that Parkinson's has progressed to PSP....not true.

[LostinHeadSpace]

Hi CLP,

Sometimes CBD presents with dementia and sometimes not--you can read through the old posts and you'll see a wide range.

[Kevin_1]

Hi

Just adding to Jen's superb post.

Dementia is a collective term like 'car'.

Then you have the makes, Audi Ford etc.

Or, PSP, CBD, Parkinson's+, Alzheimer's.

I hope this clarifies a little.

Best to you

Kevin

[Javan]

Yes as kevin said , dementia is just a coverall word that is used by expert idiots who do not have a clue. We have had lots of arguments with professionals who use it to hide their lack of knowledge about these conditions and do not take time to speak to the people involved.

[AJK2001 in reply to Javan]

I love that phrase "expert idiots", we've all come across a few of them in our time !

[AliBee1]

Hello and welcome.

No one wants to be on this site but you will find that you will get more support from here than anywhere else and you will soon realise that all of us are confused and none of us really understand it all, but that we all help each other cope.

My husband was finally given a likely diagnosis of CBDegeneration/Syndrome early in 2016 and for ages I could not understand what it was all about, and even the consultant at A and E had to google it !! I like Jen's reply as it says it all in a couple of sentences.

I then found this site as I went on as a 'carer' and then through it I found out about the PSP Association and finally had answers to many of my questions. They have just published a brilliant leaflet called 'A Professional Guide to CBD' which will help you a lot.

Nigel was a biochemist so was keen to donate his brain for research as a definite diagnosis of CBD can only be made post mortem. We are subsequently sent a very interesting news letter which stated that the theory is that the abnormal disease-associated tau proteins may vary, resulting in the different disease variants of CBD. This certainly makes sense as there does not seem to be a 'standard' form of this horrid disease. We are very lucky as we now have a brilliant neurologist in Southampton who understands and is determined to find out more about PSP and CBD/S.

Big hug.

AliBee xx

[honjen43 in reply to AliBee1]

In my own mind, I see similarities between effects of tau tangles on nerve pathways and effects of blood clots in capillaries in the brain. In each case, damage and effects depend on where the blockage is..

Hugs

Jen xxx

[raincitygirl]

Welcome Clp;

My husband died last July after 5 or more years wirh CBD. I can't add to Jen's great reponse, but I look forward to hearing more from you. Tell us about your situation when you are ready. Hang in there! xx

Anne G

[CLP71 in reply to raincitygirl]

Hi there,

So this is my situation: My partner Paul has been diagnosed with CBD following an MRI scan at the beginning of this year. We found out the result from a letter we were copied into from the hospital to Paul’s GP, and have an appointment in May to discuss things further with the neurologist.

At first we were told that it was a stroke as his dominant left hand was affected but then it also started to shake, and then his other hand started to be affected as well. He is now losing the use of both of his hands and so needs help with all the aspects of daily living. He is also becoming more unsteady on his feet now too, and sometimes he slurs his words.

Thankfully he still has his wonderful sense of humour and we manage to have a good laugh at times which really does help a lot.

I left my job just over two years ago to help care for my mother who had been diagnosed with Alzheimer’s and Paul was already showing signs then of having what we know now to be CBD. We eventually managed to get my mother into a home and then she died of cancer and pneumonia last year.

About four years ago I was also diagnosed with my own health problems and have Fibromyalgia and related conditions such as insomnia, IBS, RLS, migraine, chronic fatigue and chronic pain, anxiety and reactive depression, and so I’ve been coping with this as well.

In the last few weeks following a routine test and then more blood tests and an MRI scan, we’ve now been told that Paul probably has prostate cancer now as well. We will be seeing the urologist in a weeks time to discuss the results of the biopsies that were taken, and so fingers crossed.

So far we have a social worker and support worker to help us, and Paul is seen by an OT and a physiotherapist. He has also been given Botox injections in his left hand to try and open it up, and it has helped him. We also have Carer’s coming in to shower and dress Paul in the mornings and to make us breakfast and to feed Paul as mornings are not so good for me. My two adult sons at home also help with the housework and some cooking too. I order all my shopping online and get it delivered.

Friends and family are also rallying round to help, and Paul is determined to keep doing the things he enjoys for as long as he is able to.

I’m reading the book called “Finding Meaning With Charles,” which is written by the wife of someone who had CBD and she writes about her experience as a Carer of her husband through this horrible disease. It has informed me of what to expect, but she also shares some good tips as well to make things easier.

I’m so glad to have discovered this website and forum here as it really helps to know that there are others out there who are or who have gone through this too and that I’m not alone.

Thank you for responding to my posts.

[raincitygirl in reply to CLP71]

Thank you for your openness Clp

You have a LOT on your plate! But it sounds like you have things well organized, and your man has such an essential quality in that sense of humour!

Yes... Besides movement disorder, CBD can present with communication loss. This was the first symptom I noticed with hubby. The dysfunction can break down the pathway between thought and speech centre in the brain: the person hasn't lost any language or vocabulary but the brain signal's pathway is blocked. It can affect writing, keyboarding and texting as well as speech. Some of us experimented with picture boards etc to help with communication (down the road.)

Keep in touch - this is a good centre for support and information.

Hugs,. Anne G.

[LuisRodicioRodicio]

Hi CLP71!

According to the information I was able to collect, Parkinson Plus includes MSA and PSP group.

PSP Group includes:

- PSP-RS (Richarson syndrome) (around 55% prevalence)

- PSP-P (parkinsonisme) (around 30% prevalence)

- PSP-GF (PAGF) (Progressive gait frezing) (around 1% prev.)

- PSP-FTD-F (Fronto temporal degeneration) (around 4% -5% prev.)

- PSP-CBS (CBD) (Corticobasal syndrome) (around 1% -3% prev.)

- PSP-OM (Ocular motor) (around 1% prev.)

- PSP-PNFA-nfvPPA (Non fluent aphasia) (around 1% prev.)

- PSP-C (Cerebellar ataxia) (around1% prev.)

- PSP-SL (Predominant language disoder) (around 1% prev.)

- PSP? (Unrecognized forms) (around 1% prev.)

In the PSP Group could be a "Cognitive Decline Dysfuntion":

- PSP-RS (Absent or mild)

- PSP-P (Absent or mild but later than PSP-RS)

- PSP-GF (None. May appear 5 years later than first symptoms)

- PSP-FTD-F (Yes. Behavioral changes: Apathy, Desinhibition, hiperorality)

- PSP-CBS (CBD) (None. Abnormal slowness of physical movements)

- PSP-OM (None or moderate)

- PSP-PNFA-nfvPPA (????)

- PSP-C (Memory loss)

- PSP-SL (None or moderate)

Collecting scientific articles that I have been able to achieve I have prepared an Excel xlsx table comparing the symptoms of the different types of PSP and those typical of Parkinson's (PS). If someone is interested I can send it by email only.

If someone detects in my information any error or additional detail that may be interesting, I am open to receive them with interest.

Hugs

Luis

[Beads0122]

CLP71,

I suggest that you visit this site. It has helped my understanding of CBD, its relation to Parkinson’s and PSP. It also addresses questions like genetics and how these diseases are under the overall heading of Frontal Temporal Dementsia.

theaftd.org/what-is-ftd/ftd...

I hope this helps,

Bobby

[CLP71 in reply to Beads0122]

Thanks so much for this. Really helpful.