CBD

[R8360V]

Hi All, hope everyone is keeping okay. Its a long time since i havent written, truthfully im doing so now because after 8 years ive finally realised what CBD is and im scared as hell. ive always known i have Atypical Parkinissm but never known to what that really meant. I started when i was roughly 47 or 48 and now i know were im going, its practically like getting a death sentence, i cried my eyes out, but i know im not going to get anywhere with this, so anybody out there with the same disease please give me a shout, i told my immediate family and they didnt pay much attention to me, so im as lost as can be. Hope you all have a nice day, bless you all.

[Beckey]

They didn't pay much attention?! WTH is the matter with them? You need and deserve plenty of support right now.

We all have a death sentence -- it's called life, or rather, part of life. One we all must face though it's not something any of us does with relish. Sometimes the people in our lives balk when we talk about our disease because it is a reminder that life will eventually end for all of us.

Where you receive care, is there a social worker who could either speak with your family or offer other support so you needn't feel alone?

I don't know much about your particular situation, but I can say this: My mom had an atypical Parkinson's, and some tough periods, but we had good years together and she still had a full life.

I'm glad you reached out. Stay in touch and make use of all the friendship, knowledge, caring and support this wonderful group of folks offers.

[Beckey in reply to Beckey]

At the bottom of this page == memory.ucsf.edu/education/d... -- there is a list of resources. The page is produced by UCSF, which is where I go. They write:

"When a diagnosis of CBD is suspected, it is important to refer the patient to a neurologist who is experienced with this disorder, because the constellation of symptoms can be unique. Significant advances in the understanding of CBD over the past 10 years have led to improved counseling, support and symptomatic treatments."

[R8360V]

THANKS BECKEY FOR YOUR REPLY VERY MUCH APPRECIATED. I DONT LIVE IN UK BUT I GO TO UK FOR SPECIALIST TREATMENT, AND HONESTLY THEY TAKE VERY GOOD CARE OF ME THERE. BLESS THEM ALL.

[Beckey in reply to R8360V]

That is good to hear!

[JohnPepper]

What is CBD. It is very difficult to give personal information on a website like this, so If I can possibly help you I must know more about your condition. Won't you please write to me at [e-mail] and I feel sure that I can do something to help you.

John

[Don_oregon_duck in reply to JohnPepper]

I would like to to know what CBD is as well.

[Beckey in reply to Don_oregon_duck]

Corticobasal ganglionic degeneration -- one of the "atypical Parkinson's."

[R8360V in reply to Beckey]

Hi Beckey thanks for your support and help my condition started in my right leg with shaking spells and doctors were baffled because they didnt know what it was it took them 3 years to send me over to UK and there they did all kind of tests and then told me i had the Atypical condition which mine comes under the category of CBD because i have the dystonia aswell. Now im into nearly my ninth year i think.

[Beckey in reply to R8360V]

That's interesting, because so many of us have tremor and dystonia. Did you have a DaTscan?

[Astra7 in reply to R8360V]

I wonder why it is atypical? It sounds like the regular kind, especially if you had had it for 9 years. My googling says with cbd you only get 6 years or so. Can you get a second opinion? Where do you live?

Sorry your family are not supportive. They are probably scared and confused. Not helpful for you though.

[silvestrov in reply to Astra7]

"Patients with atypical parkinsonism have symptoms similar to PD, including resting tremors, slowed movement, stiffness, gait difficulty and postural instability, but in addition have symptoms and signs that are not typically present in PD, hence the term "Parkinsonism plus syndrome."

"Poor or no response to levodopa is common feature to all forms of atypical parkinsonism."

bcm.edu/healthcare/care-cen...

[Astra7 in reply to silvestrov]

Followed that depressing link!

Interestingly it said that regular Parkinson's in mostly genetic, while the other is not. I don't know of any family history of Parkinson's ( now worried I have the worse kind!).

Do you have a genetic link?

[silvestrov in reply to Astra7]

Yes atypical PD is not cheerful reading but it illustrates the diversity of different syndromes within the category of Parkinson's disease. It also shows how difficult it is to diagnose an individual and the challenge to any neurologist in treating a patient.

My father had PD and there may be a genetic link but I have not had time to pursue it at the moment. I don't have any children so if there is a genetic component it will stop with me.

There are many different types of PD and sometimes the genetically types are easier to treat than idiopathic PD. And some of the genetic types are just as difficult to treat as idiopathic PD. Like everything else with this disease it is a bag of inconsistencies. Astra7. what did the doctors diagnose you with?

[Astra7 in reply to silvestrov]

Thanks for your reply.

They just said I had early Parkinson's and only time would tell if I had the regular sort which would be better than the other options!

I have had some genectic testing done but it takes 6 months apparently so I haven't had any results yet. I have yet to tell my cousins etc who may know more family history.

[R8360V in reply to silvestrov]

I had two pet-scans done and a genetic blood test apart from other tests as well, it was 4 years of testing and proving with treatment what was going on. Genetic results showed a gene mutation and after 4 years of having the symptons on one side of the body it was all too clear what was happening. First two years the treatment did not work so they were thinking of doing the DBS surgery, all of a sudden i started to have some results, so they opted out of the DBS and carried on with treatment. I have my ups and downs like everyone, but im always different to everyone else relating to medical aspects. They seem very happy with my outcome, and also they asked me whether i would volunteer for research, so i agreed.

[R8360V in reply to Astra7]

i didnt know because i started at 47 years, then after a few years my dad got it too, then i was told i had a genetic form of parkinsons but my dads was the normal one, but apparently my dads side about 3 generations before someone had had the bad form of parkinsons, so i think i am the one whos inherited it.

[R8360V in reply to Astra7]

i was diagnosed in UK Cambridge to be specific, and i must stress they've done an excellent job!! I was sent from my country were an english neurologist saw me and referred me over. So i wasnt taken lightly they knew that something different was going on.

[Pete-1 in reply to Don_oregon_duck]

The following is taken from some web site or other. Sorry can't remember which.Corticobasal degeneration (CBD) or Corticobasal ganglionic degeneration (CBGD) is a rare, progressive neurodegenerative disease involving the cerebral cortex and the basal ganglia. CBD symptoms typically begin in people from 50–70 years of age.

[tommybigt]

hi I always thought that Parkinsonism was a reaction from certain medications. which has similar symptoms as Parkinson's .