Showing posts with label dementia aggressive. Show all posts
Showing posts with label dementia aggressive. Show all posts

Wednesday, November 16, 2016

WEGO Health Blog Challenge for November 2016 Day - 16 - What kind of suggestions I may give to others who are starting out as "Activists - Advocates - Volunteers

" What Kind of Advice I May have for those who are starting out in the Advocate, Activist Role and are "Rookies" wanting to know a few tips."


Wow, that is a very great question! I wished I had "asked" more questions when I began my ongoing pledge, and began down the road of activism, advocacy and being a volunteer when it comes to just about anything involved in the health field. When it is a chronic health issue and/or chronic pain, there are SO MANY websites, blogs, non-profits, articles and more that can begin you on your journey.

Yet, here are a few things I've learned and "taught myself" along the way.


Try to pick "one or two" illnesses, health needs, healthcare related issues, such as insurance, medications, physicians, and so forth. I am the type of person who wants to "do it all", "be in it all", help everyone, be there to assist everyone I can. I found out very quickly, especially if you, yourself Are "Chronically Ill", or are a Caretaker of someone ill, that you can definitely be in way "over your head" and in burn out quickly if you try and take on too much at once. So, try a few different avenues, such as being an advocate for a certain group, such as Diabetes, Autoimmune Illnesses (RA, Lupus, Sjogren's and so forth), heart diseases in women, children's health, becoming a blogger, posting on Social Media, on Facebook, Twitter, Pinterest and such. This may help you find your "niche'".

You may prefer to do "drives" such as the "Jingle Bell Run" for the Arthritis foundation, in many major cities across the nation, or one of the other drives, many do walks and runs, women's breast cancer, heart problems, other cancer's. If you are good with people, then you may find helping to raise awareness AND raise MONEY for one of them, could be what you feel good at.

Write! Tell your story! If you are chronically ill, you maybe already on a Facebook group, or one of the Foundations's groups, where you can tell your own story, which often helps to inspire others.

That is the ONE thing that I found out of everything I do in my years of activism, Ambassadorship and Advocacy, is TELLING MY PERSONAL STORY, either on a social media site, or possibly at a group in your town or city, or even in your newspaper. Get your own experiences out there, Those help others to see they are not alone. They have people that DO totally understand, and can support them.

Often now many of the non-profits go to a "Summit" Annually making a trip to Washington DC, in order to tell their stories to CONGRESS! We need Congress on our side for helping with medications getting passed possibly, or funding to get a new medication researched, or raising awareness of just how many people are ill, not working, and are so ill daily they are not able to cope with a job, and YOU are the ones that NEED TO again TELL YOUR STORIES TO CONGRESS!!! Those stories are exactly how we get the government, whether, local, state wide, or National, and make them understand how crucial the help and role the governments play in assisting non-profits, can possibly help others to feel well enough to work, to someday find a cure, or even STOP THE ILLNESSES, BEFORE THEY EVER HAPPEN!

So, above are the few things I've learned about getting involved, remembering you are not a "super-activist" so you can't do it all at once, then find your niche, and off you go in search of all of the help and awareness you can get in the activism direction your heart desires.


WEGO HEALTH

 

Wednesday, October 19, 2016

Lewy Bodies Dementia - Robin Williams Taken by the horrid illness and closer to "home" this took my Mom within 6 month and she passed away June 9th, 2016

http://curec.lk/2e1mP5t



#LewyBodyDementia #LewyBody #Dementia #LewyWho

 

 

On August 11th, 2014, the world lost a wonderful beloved man. Robin Williams was an amazing actor, comedian, and philanthropist, who touched the hearts of millions with his wit and humor. However, Williams suffered from a degenerative disease that, after his death, was identified as Lewy Body Dementia.

Although Lewy Body Dementia is not a rare disease, it is still widely under diagnosed and many doctors and other medical professionals are still not familiar with it. It is often confused with Parkinson’s or Alzheimer’s disease due to the similarities of the symptoms. Doctors thought Robin Williams had Parkinson’s before an autopsy revealed the massive proliferation of Lewy bodies throughout his brain, one of the worst LBD pathologies the medical professionals had seen.

In an effort to raise awareness of Lewy Body Dementia, Susan Schneider, Williams’ wife, wrote a letter addressing all doctors, medical professionals, and patient advocates to share her husband’s story. You can read it here: The Terrorist Inside My Husband's Brain.

There is no cure for Lewy Body Dementia yet but we are hopeful. CureClick has launched a new mission for a clinical trial for Dementia with Lewy Bodies to help find potential treatment for patients suffering from this degenerative disease. Please share this trial with everyone you know and help raise awareness.


This is a direct passage above from "Cure Click"