It’s Not Perfect, But Its Mine

Sitting at my computer in my home office the other day, out of the corner of my ear I heard my wife April mention my name to whomever she was speaking to on the phone. I usually don’t pay much attention to her phone conversations, but my curiosity was peaked when I heard her state that I was considered “higher risk” when it came to getting the Covid-19 virus.

Well, this is news to me, and I’m not sure that it is true (hopefully), but it was thought provoking to say the least. How is my overall health affected by the symptoms of Parkinson’s Disease? How does it compare to other high-risk ailments?

The other day, as I reached out to grab a glass left-handed, my hand refused to cooperate with my brain. This internal tug-of-war between brain and appendage went on for a good minute before my brain prevailed and my hand halfheartedly grasped the cup. Sure, I could just grab things right-handed, but what would be the fun in that? Typing on a laptop is its own special kind of crazy. I tend to only let my left side be responsible for a few keys, like shift, A, and a couple others on the far left, while my right handles everything else. It’s slow, but it works. Occasionally, however, one of my left fingers will stab out and aaaaaadd a bunch of exxxxxtRa letters to some unsusPecting wordssssss.

Compare that to someone who has rheumatoid arthritis, like my good friend Suzanne. Rheumatoid arthritis is a chronic inflammatory disorder where the body’s immune system attacks its own tissue. People with Rheumatoid arthritis have described it like “having burning, throbbing, gnawing, aching joint pain all while someone has your extremities in a vise trying to turn and twist them into a new direction” [credit: creakyjoints.org]. Rheumatoid arthritis often comes with additional conditions including fibromyalgia, osteoarthritis, Raynaud’s, and more. Many of the treatments include, nausea, infections, headaches, low blood pressure, and trouble breathing as side effects.

I am grateful for my hands.

Up until recently, I had been in the best physical shape of my life. I was lean and strong, I ate healthy foods, and my blood work was perfect. Fast forward to the present – I’m twenty pounds overweight, I’ve lost most of my muscle tone and have no strength, and I have a habit of eating for comfort over health. I’m hesitant to see what my bloodwork is doing. Living with chronic muscle aches and joint pain, I tend to be resistant to exercise in any form. Getting back to a level anywhere near where I was is going to take a lot of consistent daily work.

Compare that to someone who has Type 1 Diabetes, like my young friend Brad. Brad and I used to work together. Every morning before we headed off to the jobsite, I would watch as he stuck his finger to test his blood. Depending on the results, he would quite often need an insulin shot, given to himself in the belly. People with Diabetes also have to worry about having low blood sugar, which can result in seizures and loss of consciousness. Diabetics must constantly be aware of their levels, on good days as well as bad days. Lack of preparedness can have devastating results.

I am grateful for my health.

I don’t sleep very well, even with pharmaceutical help. I constantly toss and turn all night. The muscles being laid on are relaxed at first, then within minutes they start contracting and I feel like a large weight has hopped up on my back. When the squeezing feeling begins, I start to get a little panicked and so I roll over a quarter turn. It’s kind of like sleeping with a pet boa that doesn’t know when to stop hugging. I’m sure that it drives April crazy, although she says it’s ok unless I start kicking or taking swings at her in my sleep while I’m dreaming.

Compare that to someone who has lost a limb, like my sister Monica. A few years ago, Monica went into surgery for a common knee replacement. While in the hospital, she contracted the MRSA virus, an extremely resistant form of Staphylococcus. Doctors removed the prosthetic and spent the next year trying to battle the virus. After nearly a year in bed without a knee, they finally decided that the only way to get rid of it was to remove her leg entirely from above the knee down. After months of physical therapy, and hours of practice, she finally managed to walk across the room with her new prosthetic leg. Just as life was getting close to some normality, the infection returned and the resulting Sepsis forced the removal of her other leg, as well as some fingers.

I am grateful for my body.

Everything about my condition centers around my brain. The $800K worth of wires and electrodes that leave their tracks across my skull can attest to that. I had to take, and pass, a four-hour NeuroPsych test before being okayed for surgery. The results of the test will be a baseline for things like motor skills, cognitive skills, and memory, each expected to decline over the next few years. I have already noticed some memory lapses, especially remembering people, although that may be from not paying attention in the first place.

Compare that to someone with Alzheimer’s, like my Grandfather. Many of us know someone affected by this disease of the mind. My friend’s mother developed it recently, and the stories of memories lost is heart breaking. I know several people with family members with the disease. My last visit with my Grandpa will stick in my mind forever as I held his hand in the nursing home, his eyes showing no recognition in them whatsoever. A couple of years previously he began to wake up during the night wondering who the stranger in bed with him was. He would often get ready for work in the morning for a job that he hadn’t had for over sixty years. Whatever place his mind had traveled to didn’t include his wife, children or grandchildren. He died thinking he was alone.

I am grateful for my mind.

One of the biggest questions I have about my disease is “How long can I live with Parkinson’s?” If I do live to be a crusty old bugger, what will my quality of life be? Early on in my diagnosis journey, one Neurologist tossed out the possibility of a condition called Corticobasal Degeneration, which has shelf life of 5 years. I quickly created a bucket list and a five-year plan, bought some more life insurance and prepared myself for whatever may happen. I was kind of angry when I was re-diagnosed and my plans had to be scrapped, but I was mostly relieved at the prospect of a naturally long life.

Compare that to someone with terminal Cancer, like my first wife Kimberly. Diagnosed in 1998 with breast cancer while pregnant with our fifth child. During that first year she went through chemotherapy, child birth, a double mastectomy, a bone marrow transplant, and radiation therapy. I remember sitting with her after a transplant session, where her entire focus was on getting through it quickly enough to be able to get home in time to prepare our kids for new school year. Her desire to get back to her life was so strong that despite doctors’ estimates, she was released nearly two months early-just in time for the first day of school. The next five years was all about living and getting the most out of life. When the Cancer returned in 2004, spread throughout her body, her desires no longer had the strength to compete with the struggle. Finally, in early September she confided in me that she was done fighting. She passed away two weeks later.

I am grateful for my life.

Each of these people are heroes to me. Each and every day is or was a struggle with one condition or another, taken on with a strength that I’m not sure I’ve developed yet. They each accepted their particular afflictions in their own way. I don’t know if I could take on what they do or did and they probably wouldn’t want mine.

Despite the fact that Parkinson’s can be a pain in the butt, it is a pain in the butt that I can deal with.

I have the love and support of my family and friends to get through this. My life is filled with joy. For that and so much more,

I am grateful.

5 thoughts on “It’s Not Perfect, But Its Mine

  1. It always helps to count your blessings. Whenever I’m feeling down or cursed I swear I here Christ say, “Suck it up buttercup, I was beat and nailed to a cross by people I love!”

  2. Brian we have a lot to be thankful for and I want to tell you that I appreciate you. Thankyou for your great spirit and strength.
    You are a blessing and miracle in my life.
    Love ya bud:)
    Rod

  3. April invited me to this site to read and get into your personal thoughts here. Wow you are an amazing man to acknowledge all of the positive things in your life and share with others the gratitude that you have for EVERYTHING. As a fellow Parkie, I am in awe at what you are enduring and want to thank you for the beautiful way you wrote up this article.

    1. Thanks Martha, you are kind and generous. You know as well as anyone how frustrating PD can be. Looking for the good in things keeps me from going completely crazy. Hang in there!

  4. You are one of my favorite humans. Although the years go by I think of you and your sweet family and all that you have taught me through the years. I wish you good health and happiness always! Xo

Leave a Reply

Your email address will not be published. Required fields are marked *