What Patients Want
ฝัง
- เผยแพร่เมื่อ 21 พ.ย. 2023
- WHAT PATIENTS REALLY WANT
We live in a time and era where it is becoming increasingly important to focus our medical services on the wishes and needs of individuals affected by Parkinson’s disease, and their families. In this presentation, Prof Bloem will discuss several recent research studies that have highlighted the priorities of people living with Parkinson’s disease. He will also address which measures can be taken to ascertain a truly personalised approach to the management of Parkinson’s disease, taking the individual needs of each person with Parkinson’s as the starting point.
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Do have some family history of Parkinsons so I find this helpful and hopeful thank you
It's been a huge breakthrough for me to discover your website. At last "wee Parkies' can learn the many critical facts, history, and an overwhelming feeling of hope and inspiration for the future.
I am a newby to the world of Parkinson, so having a sense of what, where, and how I might cope, for my future is so exciting.
I feel that living under the North American medical controls of a strong science based medical system is horribly ignorant of what the world offers to the healing process for humans. So sad that corporate greed in north America so influences the wider-world options for safe healing.
Thank you, Rodney Vancouver Island Canada
This is a wonderful direction. Thank you. In the past I have been critical, but I appreciate this approach today. We need to be able to openly communicate this way. I feel very hopeful, for what’s ahead!
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Excellent, very informative thank you.
Watched from here in the UK. Love the whole idea of hopeamine, without hope life becomes meaningless. I exercise ‘alot’ so have some hope.
ParkinsonNet is an awesome idea, just don’t understand why Parkinson’s UK aren’t supporting it here in the UK. Nightmare finding a neuro physiotherapist to help with my fine motor symptoms - I know the right exercises will help. After being told I wouldn’t be able to continue playing my guitar, about to pick it up again.
Love, love, love Bas’s talks. Thank you so much for sharing.
Excellent information. Are there other reasons for acting out during REM sleep? Could it be a side effect of taking too much of an SSRI ?
What Parkinsons patient's want. Bas Bloem doesn't have a clue.
He wants to know what you think I am sure. Can you please expand?
Why does he put everything on clinical trials. When there is an alternative treatment, but big pharama won't fund a trial, how do you do a clinical trial. Instead, I
Of saying I am not interested in anything that hadn't had a clinical trial Bloem, should be raising funds and working with other people to fund clinical trials into alternative treatments and not dismissing them because there is no data. Big pharma only funds clinical trial if there is money that can be made. Have I expanded enough why I don't listen to bloem. I put a post on Parkinson's UK about the keto diet and B1. Somebody put up a video by Bloem to dish everything I was saying. Bloem briefly mentioned Dr Mathew Phillips' small trial of a Keto diet to help Parkinson's, and he dismissed the results. He says simenet is the gold standard and said I am only interested in clinical data. He never said that his gold standard would stop working eventually and the terrible side effects it can cause. He is putting all his eggs in one basket and is preaching negativity about alternative therapy that has helped many people with Parkinsons disease. Like sinemet, it won't work for everybody, but nobody knows if it will work until they try. Keto is very hard to do, and you have to be disciplined. B1 is about finding the right does for the person, and it may not work. Have I expanded enough. He still doesn't know what Parkinson's patients want. He talks to Parkinson's patient as if they are children. Have I expanded enough