An interview with Kevin Lockette: The Hawaii Parkinson Guy on September 28, 2024.
Biography/Please tell me a little about your background.
Kevin started with Medtronic Neuromodulation Deep Brain Stimulation in May of 2013 after 23 years of being a neurological based physical therapist with a focus on Parkinson’s Disease. Kevin Lockette has been a practicing physical therapist in the rehabilitation field since 1989 and is co-owner–with his wife, Ginger–of Ohana Pacific Rehab Services (www.ohanapacificrehab.com), LLC, in Honolulu, Hawaii. He is the primary author of a landmark medical text on rehabilitation, Conditioning with Physical Disabilities (Human Kinetic Publishers, 1994).
Kevin also authored a book for caregivers and Move It–An Exercise and Mobility Guide for People with Parkinson’s Disease
Kevin is a past head coach for the United States Disabled Sports Team (a member of the U.S. Olympic Committee) and coached in international games, including the World Championships and the Paralympics in Barcelona, Spain, in 1992. Kevin moved from Chicago to Hawaii and gradually change his focus from disabled athletes to gearing his community service towards helping people with Parkinson Disease.
Presently Kevin runs 2 Parkinson Support groups. Kevin was a past president and now serves on the Board of Directors for the Hawaii Parkinson Disease
Parkinson Disease certifications include LSVT-BIG, National Parkinson Foundation- ATTP, and certified on the John Argue Method. Producer, writer and director of the DVD and book project- MOVE IT-A MOVEMENT AND EXERCISE GUIDE FOR PEOPLE WITH PARKINSON’S DISEASE, Langdon Street Press 2009. Developed PD group exercise program at the Windward YMCA that is now going island wide at all 8 YMCA branches as well as Hilo and Maui. Recently received a grant from Parkinson Foundation to complete a study and develop a Harmonica program for Parkinsons that is evidence based. Anticipated outcomes are a positive benefit to help improve speech with progression of PD.
Can you tell me more about your Advocacy?
I have been a Long time volunteer (20+ years) for Hawaii Parkinson Association including a 10 year collective history of being on the board of directors including past president and currently vice president. Been running a monthly support group for over 15 years and have developed multiple programs specifically for people with PD including developing the Hawaii YMCA weekly exercise classes that have been running at all of the Hawaii branches for nearly 20 years. Recently, I applied for a PF grant to develop an evidenced program called Harmonica for Parkinsons to help with speech issues. We received partial funding and are going forward with launching a study hopefully by November 2024. I have been playing Harmonica for 30 years and working with PD for nearly this same time frame. Not sure why it took me so long to put these 2 things together. Probably because of my professional training as a physical therapist was geared to motor issues. I feel like I maxed out my contribution to promoting exercise for PD and felt that speech is also very important and maybe more important as if you lose your voice it leads to a downward spiral of isolation. 90% of people with PD will experience speech difficulties as PD progresses. The challenges that people encounter is softness of voice, difficulty with articulation, difficulty with pitch (tendency to speech monotone) and saliva management. Interestingly enough, when learning to play harmonica you work on phonation, articulation, pitch and saliva management so stands to reason that harmonica could be a good and fun adjunct to speech therapy. I am very excited to lead this study and develop this program. I have a wonderful team behind me including Speech therapists and neurologists who will be performing the pre and post testing.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure? In my early professional career, I rapidly got involved with lack of access and lack or promotion for physical activity to avoid unnecessary medical complications from inactivity. In my first 5 years if my career in Chicago at The Rehabilitation Institute of Chicago (RIC) I developed a strength in conditioning program for people with physical disabilities. Basically 3 x a week after hours, I turned the PT clinic to a gym for people with disabilities. This was pre-ADA so what happened is that there was such a need that this program exploded. I ended up having so many disabilities to work with and there was not a whole lot of research or literature at that time so we ended up writing a book/ manual called Conditioning with Physical Disabilities that was published by Human Kinetic Publishers in 1994. I went on to coach strength training and became a coach for the Paralympics. My last coaching stint was the 1992 Paralympics in Barcelona, Spain. I basically got burnt out as a young person and in 1993 I move to Hawaii. After I took a short break from advocacy/community service, I started to notice that the Parkinson population was underserved. Many physicians back in that time did not refer to physical therapy for a PD diagnosis as they felt that there was nothing for them to do for a progressive diagnosis. Of course, now we know that is absolutely false. So, I started soliciting for PD referrals and over a couple of years, 90 % of my patients were PD patients and were responding well. So that’s when I started developing community exercise programs and then wrote my 2nd book called, Move It- An Exercise and Movement Guide for Parkinsons Disease. This was published in 2007.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy? I hope that people with Parkinson’s can understand that yes, getting a PD diagnosis is a shitty card to get, but you can still live well and have a bigger hand to play to do this.
What type of training and how long are the programs? I strongly believe that exercise programs or access to physical activity is essential to live well with PD. Physical activity is the only evidenced based strategy that we know is neuro-protective and can slow the progression of PD. These programs need to be available regularly and ongoing.
What effect can your Advocacy have on an individual with Parkinson’s? I hope to give the person and the family strategies to live well despite this diagnosis.
What would you like to see as a future goal for your Advocacy? My next goal is to hopefully design an evidenced base program in the box for harmonica for Parkinsons that can be implemented anywhere. It may take me a few years as we have not yet started the study, but the end game is to have a reproducible evidenced based program to help speech as PD progresses.
What events do you participate in? Gosh, everything I can. I am back on the board of directors for the Hawaii Parkinson Association, so I am involved I most initiatives. I coordinate and MC or annual symposium in April, I am the cochair for our annual walk and resource fair in November, Ongoing I run a monthly PD support group, I provide the annual training for the YMCA PD exercise classes, etc.
How does this also assist the caregivers? Great question. Parkinson’s does not just start and end with the individual diagnosed. It also impacts the family, employers in some cases, friends etc. We encourage family and caregiver involvement in all of the programs. PD impacts the community.
How can someone get in touch? What is your website? Right now, I am in the middle of developing a single point LIVE WELL WITH PARKINSON website. I have 3 different web-sites from all of my past projects but will be compiling, organizing and adding PD related resources to one web-site so stay tuned. In the meantime, I can be reached email at kevin@parkinsonshawaii.org. If anyone is interested in the Move It- A Movement and Exercise Guide for People with Parkinsons Disease e-book, just email me and I will be happy to send it free of charge.
How can others also become advocates for awareness? Many ways to get involved. One simple way is to support the local PD association. The Hawaii Parkinson Association (HPA) is gearing up for our annual walk and resource fair. I put out a simple FACEBOOK post and had a wonderful response of small donations to my walk team.
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be? This questionnaire is comprehensive.
In your opinion, what is the key to effective advocacy? Just to get over the inertia of non-action through awareness of challenges of living with PD and the awareness of local and national resources to help live well. I feel that we are not reaching nearly as many people as we need to be reaching. We have a wonderful resource center, but if people are not aware, then it is just a best kept secret.
How can we better fundraise to support a cure for Parkinson’s? I have been advocating for research for a cure and routinely donate towards organizations like the FOX foundation as I do not have the ability impact this directly on my own so I focus my community service time on what I can impact which is to promote living well with PD, but spend my money towards a cure by supporting reputable organizations.
Why should people who don’t have Parkinson’s care about this? You know, I bet that everyone knows someone or has some kind of direct or indirect contact with someone with PD. When people learn of my involvement with PD, they always say something like, “my uncle has PD”, “my girlfriend’s dad has PD”, etc. I never heard anyone say that they had no interaction or connection to PD.
Have you had any family members or relatives affected by Parkinson’s disease? Yes. My first experience was as a young kid with my great auntie who had PD. I saw how the PD symptoms were robbing her quality of life. I thought of this a lot when I was growing in my professional career as a physical therapist as even as a kid, I felt that more could have been done for my auntie.
If you had one song that would tell us more about you or represent your life, which song would it be? “I Can See Clearly Now” is a song written and recorded by American singer-songwriter Johnny Nash.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be? You can leave well despite the PD diagnosis.