Having Parkinson's saved my life.
I realize some people may be thinking "are you crazy?" Maybe I am, but my family often jokes, "Be glad it is Parkinson's, as it could be worse." I was officially diagnosed with Parkinson’s disease (PD) in 2014 at the age of 55. Earlier in life I had In Parkinson’s, stiffness of the arms or legs beyond what would result from normal aging or arthritis. Some people call it “tightness” in their limbs., but doctors told me I was too young for PD.
A little over a year ago my bowel stopped. It had happened before, so no need for concern. Senokot, Colace, and fluids. Nothing. After a week, I went to my always-works bottle of Citrate of Manganese. Nothing. Second bottle. No effect. Now I was concerned. Called my Doctor, who told me to go to the nearest ER. It had been nine days since my last bowel movement, making it difficult to eat. A CAT scan showed no blockage and with the help of heavy duty prescription medications, I was able to get my bowels moving again. The Radiologist did have one comment, I had an unknown mass in my lung.
My Pulmonary Doctor was concerned. Since the PET scan did not show much, he said all we could do was wait. Another scan six months later, and a year later, showed enough growth to warrant a biopsy. It was positive for Adenocarcinoma, which grows so slowly that it is typically discovered after it has metastasized.
Surgery was scheduled to remove the lower left lobe of my lung. Thankfully, we have five lobes and can lose one without much harm. Throughout this time, I was fighting my PD with Rock Steady Boxing classes. My biggest concern to my surgeon was how long before I could return to it. He scheduled me for da Vinci minimally invasive surgery to minimize my downtime.
I had received my Aware in Care hospital kit last year and reviewed it before surgery. The kit came with a packet of medicine schedule sheets I filled out and in BOLD PRINT read "I need my medication on time, every time."
I take my medication every six hours. Two 25-100 Sinemet, and one 200 Comtan. Often I need an additional tablet of Sinemet in between. Before surgery I had checked with the hospital, which had Sinemet but not sure about Comtan. I said that it was critical to have my medication, as without it is tough to get out of bed. They had put in my Orders "Patient allowed to self-medicate on Sinemet & Comtan." My wife is a huge advocate for me, and brought my emergency supply of medication, just in case.
Before surgery, hospitals generally tell you to stop taking all medication and fluids after midnight. In my case, I was told to take my Synthroid, Sinemet and Comtan at 5:00 a.m. Surgery was planned to start at 8:00 a.m.
Word passed to recovery room staff to have me up and walking as soon as possible. Once I woke up, they had my Sinemet and Comtan ready. The medicine kicked in quickly, and within 15 minutes I was ready for my first walk. With the help of two nurses and a strap for stability, a few hours after surgery, I was taking a few steps.
Taken up to my room, where I had my Aware in Care kit sheets filled out, I gave them to the Nurse and Clinical Assistant. I posted another paper from the kit on my door that read, "My name is Tom. I have Parkinson's disease. Medication is CRITICAL to me; I need it ON TIME EVERY TIME. WAKE ME TO TAKE MEDICATION!” Everything went smoothly. The nurses said that they normally don’t wake patients, but that I had been so adamant about ON TIME EVERY TIME, that they woke me for my medication.
It was a gift to be able to get out of bed and keep moving. At night, because of my PD I do not sleep, so every two hours I was up and using a walker for balance. I would walk the full length of the hallway. Keep moving!
I had no problem getting my medication to this point. The next morning, at 5:00 a.m., my medication was due, but the Pharmacy had keyed in 9:00 p.m. instead! I had explained how missing one dose would take several days to get me back on schedule. So we eventually reached the right person to override the pharmacy lock to get me my medication on time. Whew!
The hospital staff loved the Aware in Care booklets, so I gave them multiple tear-off sheets that listed the medications people with PD should avoid. This way they have it for future patients.
Thankfully, because I was able to get out of bed and ambulate every two hours, my Surgeon was so impressed at how well I was doing that he discharged me the following day. Typically, a lung Lobectomy would mean a two to six day hospital stay. Keep moving!
One of my unsung heroes in all this is my Coach, Kristi. She is the passion behind Rock Steady Boxing in Austin, TX, where I work out with a fantastic group of friends three times a week. My daughter Kate has even joined me for a class. If you fall at a regular gym they may call 911. Not good. At Rock Steady Boxing it is a group of friends who know or have PD. We lose our balance frequently, so if you fall someone will say “it’s not time to take a nap, keep going!”
The best thing we can do before any hospital stay, planned or unplanned, is to keep exercising. Work up a sweat three times a week. Rock Steady classes are 90 minutes – 15 minutes of stretching, 60 minutes of customized workouts to your level, and 15 minutes of cool down stretching. Due to post-surgery restraints I still cannot lift more than 10 pounds, but can go back to Rock Steady and participate in light exercise and stretching. It feels great to be back in the boxing ring.
A huge shout out to The National Parkinson Foundation Aware in Care team for putting together those kits for when we end up in the hospital, and Rock Steady Boxing for keeping me in shape so I can bounce back faster!
You can order a free Aware in Care hospital kit at www.awareincare.org or by calling NPF’s Helpline at 1-800-473-4636. Get the kit. Know the facts. Be Aware in Care.