CBD diagnosis likely

[Upturned]

Hi all I'm 57 and feel like it's all over. I was told I have young onset vascular dementia about 2 years ago. Recently my neurologist said he thinks I also have CBD. I'm just waiting on a scan. But he is 90% sure it is CBD. Any advice would be much appreciated.

[honjen43]

Hi Upturned, welcome to this support group. It also supports CBD and similar neurodegenerative diseases. Don't despair. You have found this group! It has contributions worldwide. I happen to live in New Zealand!

If I am able to help improve your day, can I suggest that your diagnosis is not a "double whammy", merely a revision and clarification of the initial diagnosis!

My husband finally had a diagnosis of CBD after at least 1 other in our family thought he might have Parkinson's years before, but it was not picked up by the GP until several years later and at a time when I was beginning to question the Parkinsons diagnosis.

My hubby denied anything was different and did little to increase his fitness, aerobic activity and strength which was suggested over a lengthy period. By the time he did, it made little impression. He used to spend most of his time seated, at work, or at home reading books nonstop, except when playing solitare for hours at a time at the computer! On occasions, I could coax him outside to walk. Or he went to dig the garden! Or mow the lawn!

You are faced with this at a relatively early stage in your life. If you enjoy walking, cycling, dancing, gym activity, or any of these, keep doing it! If you don't do them now, then now is a good time to start whatever takes your fancy!

Exercise seems to help. If you have trouble with balance, get some help at a gym, or physio class. Or do the exercises sitting down, or holding on to a walker, pole or static furniture. Or just walk! Each week, push yourself to cover a little more distance, no matter how long it takes. But stay safe!

Gather a support group around you, here and in your family and neighbourhood.

Think what you want to still do with life, get on and plan that bucket list, and get out and DO IT! while you are able.

Discuss with your partner the nitty-gritty bits of what can happen, and decide how you want your life to be managed now. Stay in control!

Decide on the details of powers of attorney for health and wellbeing and for finance, and get them drawn up while you can communicate and think with clarity. They are not documents that make easy reading, so make sure you have documented what you want.

I found having a joint bank account and both our names on insurance, phone, power, accounts made things so much easier as my hubby's abilities to manage them reduced.

Once you have future proofed these necessities,then, go out and enjoy life, keep active and listen to advice here and elsewhere.

You will probably find more relevant information here than from most any neurologist or specialist or GP. They may, or may not, have knowledge of CBD, but here there is great understanding of what you face and a lot of knowledge of how to deal with it and fight it as you go.

Look too at research going on. There is currently quite a bit in the Altzheimers dementia that may in the future be pertinent to PSP &, CBD. Look for trials and see if you qualify to take part, that is, if you want to.

You are allowed to rant here if things get you down! We all understand that need and will be supportive.

Learn all you can about the things that help, and follow the advice.

Get out and find enjoyment in life - don't let the thought of CBD stop you from extending yourself, and doing things you always wanted to do, but didn't!

Big hug!

Jen xxx

[Upturned in reply to honjen43]

Thank you so much

[SewBears in reply to honjen43]

Excellent reply! I couldn’t have said it better ❤️

[honjen43 in reply to SewBears]

Might have been shorter!!

Hugs

Jen xxx

[cayabrewer in reply to honjen43]

Excellent reply!!! Thanks for your words

[Jessicajane66 in reply to honjen43]

Hi Upturned,

Whilst everything that Jen has said is fantastic advice, there is still the crucial element missing. That is your nutrition.

You can reverse your symptoms and become almost 100% well again by following a new and exciting (albeit strict) regime. Your body heals itself, beginning at the cellular level.

You must believe me because I speak from experience.

I have MS and after four years of following this diet am now well again , not suffering neurological symptoms or struggling to walk, or feeling fatigued all the time. What used to be like a brain fog for me has gone and really I don't feel that I have a disease at all really anymore.

I am a Massage Therapist and have been able to return to work. I am 53 years old

So Upturned please take this step and consult my partner Anne-Marie Pichon who is a Nutritional Consultant, and let her help you take charge of your body and your life and get on the road to health again, rather than just preparing for a future of rapid decline. You can get well again.

Her email address is [e-mail]

Phone number 0034 666 966573

And if you should want to ask me any questions mine is [e-mail]

Phone number 0034 676 284170

Wishing you the very best... strength and courage,

Kind regards,

Jessica

[honjen43 in reply to Jessicajane66]

Jessica-Jane, MS is nothing like PSP, full name Progressive Supranuclear Palsy!

Specialists who know and research this disease have so far found no cure.

Am pleased diet has helped you with your MS.

I see from your other posts that your mother suffers from PSP. However, although a special diet might help for a while, as will exercise, and some medications that may alleviate some symptoms for a while, i repeat, specislists have so far found no cure.

Please do not offer your diet as a "cure" for PSP.

Jen

[honjen43 in reply to Jessicajane66]

I note too that you live in Spain and that your phone number is a Spanish one. I feel that calling your number from another country is going to cost dearly and add to any distress your message might cause those seeking a pathway to a cure.

Please continue to keep us informed about your mum, and whether you have tried your diet on her, and how she responded.

Jen

[raincitygirl]

Hello Upturned, and welcome to our community.

As usual, Jen has laid it all out with common sense and compassion - I don’t have any additional advice - I just welcome you and hope you are one of the “slow path” cases, if it is CBD, and you get time to focus on what you can do with the time and health you have. Advice I try to take myself since none of us know what’s around the next corner....

Hugs, and keep in touch ❤️ We’ll be here for you.

Anne G.

[Upturned in reply to raincitygirl]

Thanks

[Dadshelper]

Welcome to the site. You have been given some excellent advice. Make use of the search feature on top of page or just ask, someone will respond.

Ron

[daddyt]

Hi Upturned. Welcome to the group that no one wants to belong to, but you'll sure be glad it's here. Jen put it rather succinctly. She has mentioned exercise, and I can tell you from experience it makes the difference for me (I'm PSP), it could make a difference for you.

Tim