An interview with John Carmichael: Sharing the Shake
Biography
I was diagnosed in 2014 with my primary symptoms being a slight tremor in my right hand and falls. The falls were a major concern as there have been several family members with cancerous tumors in their brains. After many visits to a neurologist, carbidopa/levodopa (Sinemet) was prescribed and ultimately led to my diagnosis due to improved symptoms after taking it.
Can you tell me more about your Advocacy?
I am not sure that this is advocacy as you may define it. After my diagnosis, I immediately started advocating for Parkinson’s, writing a blog, riding long distance bicycle rides for both Parkinson’s and cancer as I had lost a 16-year-old niece to a brain tumor. I also trained and ran a Spartan race at Fort Benning and a Warrior Dash in Mississippi along with many other local mud runs. I had personal t-shirts made with “The Real Slim Shaky” on the back to encourage discussion and engagement.  My wife and I also participate in Parkinson’s Moving Day in Mobile, AL.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Honestly, my passion is remaining positive and happy and sharing that with others, letting them know that they are important simply by telling them. I may not know what they may be going through, but honestly, you could possibly save a life without knowing. As a combat veteran diagnosed with PTSD, I know too well how just a few positive words and helping an individual understand their importance could very well save their life.
I got involved with Parkinson’s awareness and hope for a cure because I wanted to make a difference after being diagnosed. A favorite quote I coined is “I don’t want to be shaken by Parkinson’s in the world that I live in; instead’ I want to shake up the world where I live despite Parkinson’s”.
What type of goals does individuals with Parkinson’s have when seeing your Advocacy?
Unsure. I am trying to grow an audience to really be a strong advocate and that takes some time.
What type of training and how long are the programs?
This doesn’t apply to me as I do not currently do these. I would be very interested in training others through a strategic program to increase advocacy and awareness. As a former Army NCO and also as a Mill Manger with 130 plus employees, I do very well at training and speaking in front of large groups.
What effect can your Advocacy have on an individual with Parkinson’s?
I would hope inspiring others would be the first thing. Secondly, I hope people will find positivity and happiness despite Parkinson’s and share that with others. Finally, I hope others continue to move, regardless of the moving that they can do; just keep moving.
What would you like to see as a future goal for your Advocacy?
I would really like to share my vision of what Parkinson’s advocacy looks like. Too many times, we often share with our elected officials the importance of continuing research, looking for a cure, and preventing Parkinson’s in the future; we need to share the why by showing multiple faces of those who have this disease and what our daily life looks like at various stages. There are a lot of people advocating for many diseases; understand which elected officials have been affected by Parkinson’s in a personal way and help them become our voice in policy making.
How does this also assist the caregivers?
I think it brings caregivers together, certainly like my wife, and gives them a common forum to talk about their difficulties and successes. My wife had to move from full-time nursing to PRN to help me daily. The VA has a Caregiver Assistance program which provides a stipend for providing care, a once per year visit to ensure that the home is safe, and that any assistive devices that are needed are provided. There is also assistance provided for the stresses and emotional support that caregivers may not even see that they need. I think caregivers that are not attached to the VA do not understand what resources may be available to them, and many more may be unwilling or even too embarrassed to ask. Outside of what the VA offers, I believe similar programs are needed for caregivers.
How can someone get in touch? What is your website?
I currently only use Facebook, Instagram, possibly starting my blog again at the address listed above. I am just starting to reach others outside of my own community as technology continues to advance. Honestly, my advocacy is limited as my current audience is slowly growing. Right now, I am merely sharing my Parkinson’s journey and that of many other Parkinson’s advocates that are much larger than my attempts at advocacy. I also think that social media messaging is a very good tool as well.
justbeslimshaky on Instagram
John Carmichael on Facebook
How can others also become advocates for awareness?
Start with free platforms such as Facebook, Instagram, or other social platforms as you start growing your base followers. Define your vision of advocacy: research, products, personal experience, etc. When you have an opportunity to be interviewed, take it. If you get to participate in a podcast, do it. If you get the opportunity to contribute to a book, give it your best. Start, and stick with it; it takes time and commitment, and you will make mistakes.
In your opinion, what is the key to effective advocacy?Â
Keeping it in front of elected officials, pharmaceutical companies, research groups, and medical providers. I believe that events such as Moving Day and other events should be more frequent, and we should work to build a network of people listed above to attend and help raise awareness.
How can we better fundraise to support a cure for Parkinson’s?
I believe that uniting all groups that raise money would be key. Right now, we have many national, state, and community groups that raise money, but we are not united. Mailouts, emails, and advertising on social media are fairly effective, but I think that we must have more community involvement at events, not just people with Parkinson’s and their families. Additionally, as crazy as it may seem, there must be a way to trademark or place some other control so that individuals and companies who are profiting from items such as shirts, jewelry, etc. should not be allowed to do that. Those monies should go to a united Parkinson’s foundation.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I mainly utilize exercise and continuing to be active, but as I have been fighting since 2014, Parkinson’s seems to be accelerating. I do use self-reflection and have been sober for 3years and 4 months now as a recovering alcoholic. I think my time is best used trying to bring more familiar advocates and professionals together by trying to somehow link them together. What can we do to raise awareness? How can we unite professionals with common messages? How can we draw on the resources of the people at different stages of Parkinson’s? With all the messages out there, it can be quite confusing for the newly diagnosed and those who progress through various stages.
Why should people who don’t have Parkinson’s care about this?Â
Much like cancer, I think that there are very few families who are not touched by this. They don’t necessarily understand the process of progression and what daily caregivers go through. Given the exposure to environmental and health factors, if we do not reduce the growth and possibly find a cure, we will see Parkinson’s continuing to grow, affecting people from all ages, ethnicities, and cultural groups. Those who do not have Parkinson’s could soon find it at their doorstep as well.
Have you had any family members or relatives affected by Parkinson’s disease?
As far as I know, I am the first. Due to exposure to many environmental factors in Desert Shield/Desert Storm and a wide variety of gastric issues, my risk factors were much higher.
If you had one song that would tell us more about you or represent your life, which song would it be?
“Lean on Me” by Bill Withers. I am fighting Parkinson’s and others in the fight can lean on me when they are not strong. Likewise, given the inconsistency each day with Parkinson’s, I may need someone to lean on as well. We are a family.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
My quote: “I don’t want to be shaken by Parkinson’s in the world that I live in; instead’ I want to shake up the world where I live despite Parkinson’s”
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
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