Rare Species

Hello, Im Helen, Im 64, a wife, mother, granny, and a big dog’s special person.
Im not able to work.
Ive found my way here after nearly six years of gradually going downhill with end stage Liver disease, that no cause has been found for. Ive a load of other unexplained symptoms too.

Two weeks ago I was diagnosed with Parkinsonism - Acute Hepatic Cerebral Degeneration - a brain/liver degenerative disease caused by my liver not getting rid of toxic manganese waste - cause also unknown and so heckin rare my medical team don’t know anything about how it will play out, other than I have symptoms of Parkinsons.

Suddenly a lot of the previously unexplained symptoms now make sense!

I seem to be having more problems with my brain than the motor and non motor, but Im really noticing the swallowing thing and the balance thing very much.

For me, this latest diagnosis is a big relief! Ive spent too long not knowing what was at the root cause, so now I can make decisions and organise my life accordingly.
Ive done alot of the angry/grieving/sad bits. Now its all about making the most of the rapidly decreasing marbles I have left!
We get through it mostly by laughing at the increasingly ridiculous things I come out with. My husband is getting pretty good at deciphering my gibberish :joy:
I really hope Ive posted this in the right place,
This seems a really supportive friendly place, Ive learnt loads already :blush:

Welcome to the forum, Helen. I love your spirit. Being able to be silly and have a good laugh at times like this is an amazing gift. You’re been through such a lot and being able to hang on to your sense of humour must be a great help. It also sounds like you and your husband are able to laugh together - that’s a real gift.

I’m really pleased to hear that you’ve learned things already from being here. Have you also had a chance to explore our website? There’s a lot of information there. If you need any support or advice, don’t forget our helpline on 0808 800 0303.

Looking forward to seeing more from you soon.

Best wishes,
Forum Moderation Team

Thank you!
Ive been all over the website exploring, and had a useful chat via the helpline - even got a good response from the American site that I emailed accidentally thinking it was the UK :joy: Theyre hoping to find some manganese info for me.

It has been a long steep learning curve to get to this point, learning from others, observing, listening, being open to adaptation and change, learning to speak up and say difficult things, problem solving… and here we are!
Thank you. :kissing_heart:

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Hello unstitched and thank you for writing such a wonderful post. You’ve obviously been through a lot and still are but have discovered as I have, that the cards fate has dealt may make my life a challenge but it is still my life and I have made a conscious choice to make it the best life I can. Not always easy, sometimes it would be nice to stop the world and get off for a bit, but I’m a firm believer in being positive as even a cursory look at my posts will show and I say it so often that I suspect regulars to the forum could have a go at writing a response as if by me and be pretty accurate.
i started a thread a year ago which i think would appeal to you search Today was a good day and have a quick look.
Long may you retain your spirit and zest for life. I believe that is the strongest tool anyone has when living with a life changing cvodition.
Best wishes to you and your husband


Well @Tot what a lovely welcome, thank you :blush:
I have seen the “Its been Good Day” header but didnt think of exploring, so Im very happy you brought it to my attention. Its a great topic, so nice to read and absolutely in my playground. Awesome!

And I in turn was very happy to read about your lovely day.
Welcome on board.

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