Kudos to Gary Sharpe and Deb Helfrich who stand for something, and spend their time trying to help others, as opposed to those who spend their time bitching, complaining about LinkedIn, or their favorite whipping boys. Let's congratulate those that help others accomplish things, and let the negative complainers know they are....er...kind of a waste of bits and bytes?Read More
Some very good information that perhaps will help to teach people how to treat those with Parkinson's. Very harmful are the following: criticism about things the person with Parkinson's would like to do, or take care of, but can't any more, to be spoken to in a put down kind of voice, to cause them stress over something on purpose because you know it will cause stress, and to show impatience with them when they have to take time to speak and to try to make their voices loud enough to be heard.
And most of all -to be forgotten, because you don't feel comfortable around someone who has a progressive disease. So you don't call, write, stop by, or check on them. Their world becomes even more isolated and they feel as though they don't matter to others any more. If you care for- or care about -someone who has Parkinson's, please read the article. It might help you to understand why their primary caregiver gets a bit put out with others. We're the 24/7 care, and we're the ones who love them the most, and give them the most encouragement possible. We laugh and cry with them, we struggle when they do, we celebrate their successes and work hard on the tough times, and we live on hope for a cure. We watch for any signs of change, when time is of the essence to get to the neurologist. We listen for sounds in the mornings-are they sleeping, are they breathing, we listen for the shuffle of the feet across the floor, and know that we made it through another night. Then we start another day filled with the challenges just like the day before and the day before that. We know that we won't be going on a trip, a vacation, shopping, a ride, to an event, to see friends, or to just get out of the house.
But, we have the best son possible-he comes to get his dad and helps, he takes him home with him to spend 5 weeks of specialized therapy for Parkinson's. He gives up his vacation days to come home. So Parkinson's has a hold on him, too. Together, the three of us hold each other up, and give it our best effort to make the day a good one. This has been a long comment, but I write from the heart-and my heart has been filled with years of Parkinson's being a part of our daily lives. It can't be said in a few words.Read More
YAY Gary! Your improvement on the exercises is wonderful...I've always had problems keeping the ball on the back of cupped hands! These helped my friend about six years ago when his first symptoms began. He couldn't lift his forefinger on his dominant hand...by doing these types of exercise, he REGAINED function and still has full use of his hands today! Glad you came up with a brilliant idea with "tie-ons"!Read More
Gary is a shining example of someone not only taking responsibility and control of his own health and wellbeing, but also sharing so graciously with others. Please share.Read More
I applaud your efforts to research and report on various products and modalities that you and others have found to be beneficial in coping with the effects of Parkinson’s disease. I have noticed that some of your posts on a few Facebook Parkinson’s support group pages have met with opposition. The page administrators sometimes associated your posts with commercial attempts to prey on people who may be desperate for relief from PD symptoms. In your case I think that the censorship is unfair.
The page administrators (and I am one on several pages) need to walk a fine line between restricting bogus and self-serving claims of Parkinson’s cures from testimonials and posts of PWPs who have actually discovered ways to reduce, and in some cases eliminate, their PD symptoms.
I do know that many of those claims are genuine because of what I’ve seen in others over the last 13 years and what I’ve experienced myself. (I went from 7.5 Sinemet tablets a day in my sixth year post diagnosis to being totally western medication free over the last four years, and counting.)
I see two main problems. First, too many of us are blind followers of our doctors and the mainstream medical community. If we don’t hear about a treatment from an M.D. we assume that it's a scam.
Second, and this is related to the first issue, too many of us accept as a fact that it’s inevitable that our condition will deteriorate and that there is nothing that we can do about it. This mindset was reinforced to me when I recently read a book about living with PD written by a friend of mine. The book was a brave account about how Parkinson’s has affected his life. But, the most heart wrenching part to me was that he used the word “incurable” ten times in the first 100 pages. How can we find ways to live well with this disease if we’re only willing to listen to the established medical community, and we are resigned to a continued deterioration in the quality of our lives?
Yes, Facebook page administrators have to protect their members from scams and charlatans. But, they also owe it to their members to spread the news of, and open their minds to, complementary therapies that can improve the quality of their lives.Read More
I hope you are doing well. I really appreciate the work you are doing for Parkinson's community. Sadly, my family had also been affected by Parkinson's disease, so I have been working on trying to make the lives of my family and millions of patients with the similar disease better.
Two years ago, I along with some friends started Trequant; a company to help tremor patients understand their tremorsdisease better by a wearable that monitors their tremor values, provides insights about the disease, and helps with understanding affects of medication.
In these two years, we competed at national and international level competitions and won 15 prestigious awards. And now, after much hard work, we have launched our product on Kickstarter: https://www.kickstarter.com/projects/trequantifier/trequant-first-wearable-for-tremors
Our aim is to change the lives of millions of tremor patients. And we need your help in achieving that.
We would really like if you could feature Trequant on your website, so we can reach tremor patients, and help them take back control.
Gary- very nice video- thanks for pushing for new ways to keep moving. By the way thanks for the article on my "Friendly Beds"- lots of web hits from people looking for bed mobility help.Read More
Your other movements and progress have been impressive enough, but it's really remarkable that something as basic as walking was so impacted by some fitflops and some mindfulness. Nice work, Gary and Deb!Read More
Gary, I don't use the word awesome very often. THIS is awesome news.Read More
Very powerful read. - thanks for sharing! Perhaps your nature did not directly set you up for Parkinson's, but may have determined your default coping style. My experience has taught me that I always have to be mindful of the beast that is within me, regardless of what outside stressors I may encounter. Whether I respond to stressful circumstances through Fight or Flight, she can derail me in an instant. Developing a mindfulness practice has really helped me understand and mediate these responses to perceived threats. Wishing you all the best as you continue to out-think Parkinson's!Read More
Gary Sharpe you continue to inspire me and humble me. Your gift with the written word is unique, the power to generate emotional response in the reader is at times breath taking. Thank you for your continued bravery in showing many of us the way to shape ourselves and our future by sharing your very personal story.Read More
Congratulations Gary Sharpe on this amazing milestone. You continue to grow from strength to strength and inspire others along the way. I think your evidence is a stark reminder to us all that we have so much to learn about our brain and the power of the mind. Best of luck with your new learnings and the journey ahead. Thanks for sharing.Read More
This is exciting to watch things unfold. You, Gary and Deb are touching on territory that hasn't been pounced on yet. Wishing you the best of luck. For some reason the video only played for about 5 seconds and then said no longer available.Read More
Wishing you all success in your endeavour for Out-Thinking Parkinson's Project. You are a source of inspiration for all who are suffering from Parkinson's with your innovative methods of dealing with the Parkinson's and for Out-Thinking Parkinson's.!!!Read More
You are an inspiration Gary and Deb, taking on this condition and not letting it define your life. I thank you for including me in your network and journey.Read More
Great post Gary. I really hope you can get Medical Scientists to engage their brains and think outside their textbooks. Unfortunately too many of them are trapped into a way of thinking, or sponsored by Big Pharma. But we have to start somewhere.Read More