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Teri my wife and my daughter Alea observed Parkinson type symptoms in me. Not much arm movement or rhythm when walking, balance a bit off and my morning newspaper didn’t want to hold still for me to read. It was time to get answers.
And so my journey with Parkinson’s disease began in 2007. I was first diagnosed with Parkinsonism but not Parkinson’s. I didn’t really understand all of this; the true PD flag was raised in 2007. I was started on Requip; it didn’t have any effect on me. So I switched to Carbidopa-Levodopa (Sinemet), considered the Gold Standard. The meds helped control the slurred speech, mild tremors and more. I thought it worked pretty well.
Once you’ve been diagnosed, educating yourself about PD is very important. Prior to the pandemic my wife and I attended numerous meetings, conferences, support and exercise groups. Since the pandemic Zoom classes and webinars are our means of staying in touch with others about PD. If there were one comment I would make - don’t get obsessed with PD and let it become the focal point of your life. Relax and enjoy; take each day as it comes. It will be a challenge, but try to do it.
Informing myself - hearing doctors speaking, attending support groups, seminars - helped guide us along the way. Teri was always with me and we would talk about what’s next and what options we had. Together now for 43 years of a wonderful marriage. Along the way I have been treated for these PD symptoms: tremors, freezing, dyskinesia, dystonia, low blood pressure, high blood pressure, constipation, foot drop, restless leg syndrome, fatigue, sleep disorders, acting out dreams, depression, poor balance, falling. Over time my health declined.
I heard about DBS - Deep Brain Stimulation - and listened to top physicians discuss this and some other possible remedies. DBS is a huge decisions. I found out I was a good candidate in the initial round, but would have to more extensive testing before I could be officially certified and accepted. I discussed DBS with Teri and other family members before I had the surgery in 2014. I had no problem with the surgery; it was a 3-step procedure. My daughter Alea shaved my head. And she shaved others in my family. I was surprised when I saw that my son Justin, Daniel my son-in-law and Andrew my 2-year-old grandson were ALL bald too. This support meant so much to me. My daughter not only shaved heads, she had a tee shirt made for me that said: “Bald and Ballsy.” I wore it into the operating room and announced to the surgeon “Go ahead - Make my Day!”
After the DBS surgery in 2014, my gait and balance improved and I had better voice and movement. Videos were taken prior to the surgery and again afterward. You could watch me in the before video; I was wobbling and found it hard to speak clearly. After the surgery, my video showed improved walking and that my speech had improved.
Over the years I have had some periodic adjustments of the DBS control unit to adjust to PD that keeps progressing too. Some tune-ups have been better than others. In 2016 I had my best ever tune-up; i could talk clearly. My walking and talking were much improved. I felt normal again.
In 2017 I experienced a problem with feeling an electrical impulse, like a tenz unit, behind my right ear. It took a year to get x-rays, MRIs and other imaging and to get someone to solve the problem. Finally as 2017 ended my DBS controller was replaced and I haven’t had any problems since. In June 2020 I had a heart attack and a pulmonary embolism that December. Each time within 2 or 3 days after I was home from the hospital I was outside exercising on my bike. In time I returned to exercising 2 or 3 times a day. I ride outside on a three wheel bike, adult tricycle; any of you who have ever done this know it takes energy and builds stamina.
When you think you may want to consider DBS go to a presentation or webinar with your caregiver or spouse. Check out the main companies making DBS units. Check statistical figures. Do you have to recharge the battery? How often? For how long? This is a huge decision so make sure you have ask all your questions and are comfortable with the answers.
In 2019, I joined a clinical trial of a subcutaneous pump putting Carbidopa-Levodopa into my body 24/7. This has eliminated all of my “off” times. Currently in 2021, I am taking part in another medical trial. A big advantage is that my PD medicine is provided by the research group.
I have the blank facial expression that only Parkies can have and that tends to hide my own positive attitude. I go to support groups, stay social, don’t hide, and share knowledge and experience to try to help and encourage others. This will be a lifetime journey. Within certain limitations we have tried to enjoy and appreciate the good times and look forward to more. Drug manufacturers seek to develop better medications for PD. Michael J. Fox, recognized worldwide, pushes relentlessly for more funds to do much needed research to find a cure. Muhammad Ali, also recognized worldwide, raised funds to help find a cure and to help people living with PD.
The path your body and mind take will be unique as everyone is different. Give it your best shot. Exercise is the best thing you can do to keep your body functioning, making endorphins, staying as strong as possible. Exercise is excellent for keeping a positive attitude.
I feel fortunate to have a wonderful wife and family that support my efforts. I have learned a great deal from the wide variety of people I have met over the years. I feel somewhat lucky I don’t have a more severe illness with deep pain or other terrible symptoms. I feel fortunate and try to concentrate on the positives. I think when you set daily obtainable goals, it challenges and encourages you. I also have larger goals that are harder and may be out of my control. My son moved to New Mexico about a year ago, but because of our current restrictions I haven’t seen him for a year and my goal is to see him in the near future.
Since I was diagnosed in 2007, we have tried to do positive things. I have fun, travel, see family and loved ones; I’m not just staying home and feeling sorry for myself. We are alive and kicking and we might as well enjoy life to the best of our ability. It is something that you really have to work at and if you do, you will receive a wonderful boost in your self-respect.
Since I have had PD for about 14 years, I have been moving on in stages. Recently I was diagnosed with the beginning stages of dementia. So now I have to deal with detailed mental challenges too. My physician has prescribed a skin patch of Rivastigmine and I have found that makes a world of difference. I now function better.
I plan on staying in a positive environment with my family, friends, support group, exercising and singing in Tremble Clefs. Teri and I say it’s just another bump in the road. We have to tackle it the best we can and move on; we don’t want to get stuck in a rut. I think of the Rolling Stones song “You Can’t Always Get What You Want.” I never could have kept going without the love and support of Teri, family and friends.
(Jim wrote about his experiences with PD for our Tremble Clefs Arizona Spring Newsletter, April 2021)