Cortical Basal Degeneration

[WC309]

Cortical Basal Degeneration ,,,, Atypical Parkinsons

Does anyone with this diagnosis have insights

regarding specific medications and supplements or options or ways

to slow down this freight train?

Are any medications from the few clinical trials available?

[enjoysalud]

I think it is misleading to refer to CBD as Atypical Parkinsons. For a long time everything of particular brain symptoms was considered PD and if it didn't fit the mold, then it was called Atypical Parkinsons.

It is my understanding that CBD is now considered one of six prime of life brain diseases (PSP, CBD, ALS, FTD, CTE, MSA). Youtube Jim Bower (Mayo clinic), MAKING A DIAGNOSIS OF PSP, CBD, OR MSA. It is very informative.

Alpha-synuclein is produced in the nuerons with PD. The six Prime of Life Brain diseases produce Tau.

There is a PSP association site on HEALTH UNLOCKED. Go there, several of the participants are caring for CBDs. Much information can be garnered.

Good luck!

[WC309 in reply to enjoysalud]

Hi enjoysalud

Yes I agree with you about how it is not accurate to group CBD with Parkinson’s. I am just beginning to understand these differences. Thank you for the suggestions to look at the mayo clinic material as well as the PSP group on health unlocked . Best wishes

[enjoysalud]

Ps: I think if you click My hub at the top, three communities will come up.....one of which is PSP.

[zadok459]

Have you heard of photobiomodulation for Parkinsons - google it. I'm using it also look for vielight.com

[Beanie57 in reply to zadok459]

How do you find it helps you?

[zadok459 in reply to Beanie57]

It reduces my tremor but I haven't used it for long enough to have seen more benefits. Read some research about it

[Beanie57 in reply to zadok459]

Thanks for your response I have actually done a lot of reading on this subject and purchased my friend with Parkinson’s these dopalights.com.... so interested in what benefits others my be getting trying similar approaches.

[zadok459 in reply to Beanie57]

I live in South Africa. My best friend is a doctor (Anesthetist) in London. He also has PD and is part of a medical research group of the EU and he uses these light. You can mail me at [e-mail]. I have some studies. How has it helped you

[Harebell60]

Not this exactly, but my husband has been told he has Atypical PD, possibly MSA & time will tell, oh, and likely there's more than one thing going on, so possibly CBD or LBD as well .... I was wondering what symptoms led to this diagnosis for you (or your loved one).

Forms of Atypical disease seem less understood , there is a Multiple System Atrophy Trust (uk) that has a webpage with lots of general advice that may be of interest to you, there's an MSA group on here too, where you may get answers.

My husband is on Sinamet, though it doesn't seem to make much difference. He takes Omega 3 supplements, and one for eye health called Macushield. I would like his Vit D checked, but the GP doesn't seem interested.

I haven't heard of anything that can slow this down. But exercise and staying mobile seem key, and enable one to make the most of what you can for quality of life for as long as you can.

You are not alone, best wishes, P

[WC309 in reply to Harebell60]

Thank you all for notes and encouragement.

As for standard symptoms of CBD... here is a clinical list...

Asymmetric levodopa-resistant parkinsonism, postural instability, dystonia, myoclonus. Behavioral changes, aphasia, cognitive impairment. Cortical sensory loss. Alien limb....so far I have the first three .... it would be nice to stop there.

[Harebell60 in reply to WC309]

Ha! I would say my husband had 5 of those you listed! but mildly at present. Forgot to say that a family friend who did have this, was given Vit B12 injections, but I think that was to fight her depression.

Have just returned from our first visit to a Parkinson's Cafe, and was surprised my husband was happy to come, and to stay for two hours! What a diversity of symptoms we saw and talked about. Everyone different.

A social group masquerading as a PD exercise class runs near us once a week, and I am hoping my husband's initial interest will last long enough for us to get there on Monday... Everyone was very open and positive, just making the most of things that they still can.

All the best x

[WC309 in reply to Harebell60]

Hello Harebell60

You have described the three main tools in the toolbox. Medications

Exercise

Social interaction

So far for me the second and third tools have been the most helpful ( Sinemet helps. )

Cheers

Best wishes

[estia]

My wife has cortico basal syndrome, about 8 years down the track now, but only definitively diagnosed 4 years ago. Our focus has been on maintaining good general health but she has reached the stage where most exercises are not possible - she is in a wheelchair with very limited mobility and she is also losing her voice. We are using a THC oil (not prescription! check out the Nimbin Collective Dispensary) with some success - it alleviates neck and shoulder pain and promotes rest and better sleep at night. We are maintaining as normal a lifestyle as is possible and using Aged Care support to keep my wife at home. We take every day as it comes. As far as we know there are no effective drug treatments to alleviate symptoms, which vary widely from one person to another.

Depression is a common side effect to CBS - if you get depressed seek urgent treatment and support as soon as possible as it will otherwise seriously degrade your life.

[felixned]

You can try to talk to SUNVOX on this forum who said that he has familial form of cbd. He had some interesting information about this condition