Every diagnosis of CBD & PSP is challenging, not just for the individual but their family. Ian Black's honest account in the @guardian helps to shine some much-needed light on this little-known disease.
We're here to help if you need info or support.
Thank you.
Thank you for posting this, HelenPSPA !
It has explained so many things my hubby manifested, that I had not really linked to his disease, particularly his apparent reluctance to join in conversation, or family discussion. This was long term, well before any other indication his brain was changing.
I have never quite worked out just when it all began for him. Our battle began in 2013 but I did not look for Google help until 2016.
He never discussed his difficulties with me, but got angry. Then I got angry too. In hospital, he showed embarrassment, particularly when visitors arrived at lunchtime and I attempted to help him eat. Or brought in a sip cup to help him drink. His facial expression were still able to make his emotions very clear!
Straws were acceptable, so was mashed food, always jelly and icream - but not in front of the visitors!
I have nothing but admiration for someone, like Ian, and Helen Harris, who will describe and discuss all the nuances of his/her feelings and symptoms, openly and in such a matter of fact manner, both at large and with their partner.
There have been notable ones here: individual fighters with grit, determination, skill and humour, photographers, painters, writers, partygirls, who fade away alone and we lose touch; and others who document and advise here together with love so that we get to follow their journey to the gentle, bitter, inevitable end.
Thank you to all of you!
If you are a sole contributor, consider joining forces with family, or a friend/carer on your journey so we do not lose touch with you when you can no longer contribute!
I felt so alone in fighting for my hubby. Family, our children, were supportive but not directly involved in care. Hubby and I rarely discussed moves or additions to routine that might help him. If discussed with him, he often refused to believe they were necessary as they meant he had to relinquish more independence, they were not happening, or he would not acknowledge further failing health.
He was always a man who 'walked alone'. He had a tough, lonely upbringing that meant he learned to be self sufficient very early in life in order to survive. Those difficulties changed and varied throughout his childhood until he left home.
He married a naive young woman who he learned to rely on, but who was at times volatile as family grew. He also had a short fuse. He was very supportive when I needed him, but I saw him withdraw back into himself - and have not recognised it until now.
I dont think I ever broke down that wall again, until our last 6 months together, when I put aside my frustration at his apparent lack of perception. Even so, he still refused to use the walking aid that arrived then; or to do the exercises he was given; until the physio, and Parkinson representative came calling - all of which I had quietly set in motion as I could see the need increasing by the week.
There was no discussion, just action - and reaction! But he did agree to go to 'Dance for Parkinson' and participated - my man with 2 left feet and no rhythm!
I felt so alone, until I found HealthUnlocked on the other side of the world. Maybe worlds apart, but oh so close as friends, supporters, advisers - and that feeling of such great understanding and empathy!
I hope Helen Harris and Ian have found HU!
Like Helen Harris, I too had Googled and 'diagnosed' hubby's symptoms which I could not express to others as these were rare diseases, and unbelievable. The GP and a cousin got close with Parkinsons, but adding a + showed me symptoms that mirrored what was happening to hubby. Even when he was admitted to hospital with one side of his body failing to move, those in charge failed to look further than Parkinsons.
I insisted a neurologist be brought in. He got the call, then I was advised he would not be coming as it was 'unnecessary'. The fact that he came anyway - followed by half a dozen student doctors! - made him my hero. And then he took me aside after examining hubby and explained the MRI brain scan, done a week or so earlier, and gave me a clear explanation of his diagnosis- CBD - written on a page torn out of his shirt pocket notebook in pencil.
He also gave me a jar of Olivado Coconut oil which he prescribed to hubby as he said it helped brain function. We did not have time to give this a good trial, but we did find it helped bowel function very well too!
At the time I was searching for answers, and I found HU, there was little here on CBD/CBS. Even so, there was advice here from others dealing with PSP to give me an understanding of some of hubby's problems and how best to deal with them. Since then, Google has obviously attracted many more to the site, and PSPA has produced so much helpful documentation for all of these rare brain diseases.
THANK YOU, PSPA from DownUnder! XXX
Hugs
Jen xxx
I am grateful too for posting the article. I have also read the reply from honjen43 and am keen to learn about the olivado coconut oil as it would seem there are a lot of coconut oils available. I have PSP and was diagnosed in Feb '21 but since then there has been quite a rapid deterioration especially falls. The Olivado brand appears to be more a cooking oil, so would be grateful if you could direct me to the correct one. I live in Australia.
Hi Lara_2004
It is the Organic Extra Virgin Coconut Oil with a Green label cold pressed. Not the blue label Cooking oil. The Specialist brought in half a jar exactly like this one. Said it had to be organic and extra virgin. He himself was taking 1 tablespoon morning and night. This is from memory 6 years ago, but he made a big impression!
It should be available in Oz, perhaps in health food shops. It is in Countdown here. Looks like it is available on line at olivado.com. Look at organicnation.co nz for label details.
I tried hubby on a desertspoon first with some tinned fruit. It had a disastrous effect on his bowels within a few hours. He had some control before he tried it. I cannot say that we were able to give it a fair trial as his diagnosis was given only 6 weeks before his death.
I have been cautious using it myself, but have not persevered with increasing the dose beyond a teaspoon once a day infrequently. It tastes a bit coconutty, creamy but not oily, which surprised me. Quite pleasant really.
I cook with coconut oil, but not always with this one. There may be more info on the Internet, but I have not pursued it.
Hope it can help you!
Hugs
Jen xxx
thank you for sharing. My mum has CBD and is experiencing exactly the same symptoms. Very sad ☹️
Sorry to hear about your mum's diagnosis. We are here if you need to chat to anyone - 0300 0110 122 or helpline@pspassociation.org.uk. Also if you want to share your experience at all, just get in touch.
Thank you 😁
This was followed up by a good letter relating to the article on Saturday 8th's Guardian (p6 of the Journal) which came from the carer of a CbD sufferer. There was a good analogy of a seasaw - on the one side all the problems of the disease, balanced on the other side by the kindness of strangers and caring help etc...Better put than me explaining it 🙂
Richard
Just joined this morning CBS psp
Cbd
Article by our neurologist at the university of Florida about PSP
CBD
CBD
