By: Elisabeth Ildal, Denmark – Parkinson Activist
Ambassador- & blogger WPC2019, DJ Radio Parkies, founder of Cure4Parkinson, Parkinson’s Movement UK, EPDA advocate.
201 years have passed since Parkinson was born.
51 years have passed since Mr. Harrison in New York got levodopa medicine for the first time.
201 years have passed without healing.
51 years have passed with levodopa.
201 years have passed and the general population worldwide believe that Parkinson’s is an old man’s disease where people shake.
In 2018 still, no cure.
201 years have passed and there are about 6.9 million people worldwide who are affected by Parkinson’s.
Neurologist at the University of Rochester Medical Center Dr. Ray Dorsey says in an article that in 2040, 14.2 million people will have to Parkinson’s.
On European level, it is time to change the mindset of Parkinson’s.
Let me be the last generation with no cure and let us help YPwP.
Parkinson’s is not just a disease that affects older people. No, Parkinson hits of all ages, and more than 5% are very young people. It’s about much more than to shake. It’s about everything from difficulty swallowing, difficulty speaking, where is people lacked scent to frostbite, cramps, bladder challenges, stiffness, pain, depression, of changes, side effects of the medicine.
Collected trillions of dollars two research. Governments round the World supports national associations with money, used for the printing of brochures, events, training courses for caregivers, distribution of money for research, while us who are affected by Parkinson’s are sitting and waiting for a cure.
You do not die from Parkinson’s, but with and you can live a really good life with Parkinson’s.
It’s about quality of life while waiting, is my contention that we get the biggest KICK for money by physical exercise.
So, let’s steal some of all the money for research and use them on quality of live and training. Quality of Life need to be equally important as finding a cure.
Ministers of Governments and the leaders of the World, have two understand that the numbers of people with Parkinson’s and other dementia sickness the next 10-15 years will increase two maybe the double.
The people round the world, especially in Japan and Denmark get older and live longer. The cost will be enormous. Therefore, the priorities are quality of life, by increasing function of level by exercising, which reduces the medicine.
Understanding that PWP can teach, help, understand and take of them self and each other’s.
We need special PWP share houses.
We also have to educate more neurology, therapists with high special knowledge about Parkinson’s, also speak therapists.
And then there is the whole big questions about the medicine, the side effects, cannabis oil, retirement and all the things you cannot see from swolling-to Blatter problems.
These estimates with a doubling in 2040, is probably conservative due to underreporting, incorrect diagnoses and increased life expectancy.
To combat this growing pandemic claiming investigators that the medical community should pursue the same strategies in 15 years transformed HIV from an unknown and deadly disease to a very treated chronic condition.”People with HIV infection required simply better treatments and successful treatment for both awareness and new treatments that literally sticks to the doors of pharmaceutical companies,” said Dr. Bastiaan Bloem, from Radboud University Medical Center in the Netherlands.
“Today, HIV has become a treating chronic disease. This surge in the number of Parkinson’s patients is striking and frankly worrying.
We feel it is urgent that people with Parkinson’s go to the pharmaceutical industry and politicians alike, and requires immediate action to combat this huge threat.
“What can PwP do for them self to changes the mindset at a European level?
People with Parkinson’s can:
1. Strengthen Their network
2. Learn something new
3. Take life activity
4. Be present in the Present
5. Give of them self.
Parkinson’s community have to come together and focus on activism.
The priorities are:
(a) to develop a better understanding of the environmental, genetic and behavioral causes and risk factors for Parkinson’s to prevent its outbreak;
(b) increasing access to care – about 40% of patients with the disease in both the United States and Europe do not see a neurologist, and the number is far greater in developing countries;
(c) advocate for increases in research funding for the disease.
(d) and lower the cost of treatments – many patients in low-income countries do not have access to drugs, including medical cannabinol is both life-saving and improves quality of life.
(e) quality of life, by increasing function of level by exercising, reduces the medicine.
(f) (f) Understand that PWP can teach, help, the position-and-take of them self and others.
(g) (g) We need special PWP share houses for living together.
(h) (g.1) European houses of training, each in every county, with high level, like Danish Montebello. https://www.nordsjaellandshospital.dk/montebello
(i) We also have to educate more neurologist, therapists with high special knowledge about Parkinson’s. Also speak therapists
(j) . (j) New medicine, without side effects
(k) . (k)) Pension from stage 2.at a European level.
“Too long have Parkinson’s community been silent on these issues,” said Dr. Dorsey. “Based on the AIDS community’s motto of ‘silence = death’ must Parkinson communities make their voices heard.
” Let your voices heard bee!
“The current and future burden of this debilitating disease depends on the whole Parkinsoncommunity work together and takes action. It also includes the Leaders of the world, governments and of course members of European Parliament. Please understand its now, we have to change the mindset ogf Parkinson’s, because the cost to treatment will increase to a very high level.
Elisabeth Ildal, Denmark
“We are not appendix to Parkinson’s, Parkinson’s are an appendix to all of US.