Hey Larry,
I know we are still coming to terms with the Parkinson’s news.
These first few weeks after diagnosis are full of denial and anxiety. Questions, big and small, never seem to stop swirling around in our head.
What is it? Will it kill me? Am I going to need to quit my job? Are they going to fire me? What next? Why me? How’d this happen? What did I do wrong? Aren’t I too young to have Parkinson’s? Why did I wait so long to seek help? Will I always have trouble walking? Will I need brain surgery? Will I be a burden to my family? Just how degenerative is degenerative?
Thousands of others are yet to find their way in between our ears.
You will answer some of these questions on your own soon enough. Your neurologist and other professionals can answer some of the others. If I know you, and I do because I am the future you – it will take time, perspective, dreams, hope, a community, and your connection to spirit to resolve the rest.
Take deep breaths. Appreciate your newfound slowness. Learn early on to ask for what we want or need, even if that is a nap in the middle of the workday.
Remember, while we are just becoming aware of this Parkinson’s part of our lives, it’s not new. Parky has been sharing space in our head for decades.
It is not a setback or a bump in the road. It’s our life. Acknowledging, embracing, or owning the diagnosis is not surrender. It’s taking the power of Parkinson’s back. Parkinson’s has not defined you up to this point and it is not who you are. It is a reality of your life that you must manage with discipline.
We are not alone. Parkinson’s is the fastest growing neurological condition in the world. This is the first time we’ve ever been 'trendy'.
Be in awe of levodopa. We take a lot of these pills in order to live a fairly normal life.
Laughter is great medicine. Laugh every day. Maybe look for a way to use humour as a healing tool?
Learn to say no without feeling guilty. We are not the same person that people have cast us as in their life story. We were not supposed to be 'sick guy'. It will take a while for it to sink in for other people. We don’t need to meet their expectations of you being 'well' or 'better' or even be the same dude we were twenty years ago when they knew us best.
Parkinson’s can be a gift. Actually, it is a rather crappy gift. By that, I mean I would not wrap it up and give it to anyone. However, despite constantly increasing meds, dyskinesia, cancelled outings, nerve pain, and exhaustion, we are living life more than ever. We are going places we have never gone. We are doing things we have always wanted to do, but never made priority. We also have discovered a new level of love and appreciation for our family and friends. When we ultimately accept Parkinson’s as part of our life experience, it opened the floodgates of unconditional love that surrounds and supports us. I am certain it has always been there for us. It just was never so crystal clear.
Larry, we are about to meet some of the most caring, passionate, encouraging, supportive, loving people we’ve ever known. Many will become instant-lifelong friends. #ThanksParkinsons
Yes, things will change. Time becomes relative. Plans are always tentative depending on how we are feeling. Symptoms come and go, ebb and flow, emotions emerge without warning, and tears lead to laughter and back to tears again.
It’s okay. We’re okay. We’re going to be fine. Believe it. Have hope.
Love,
Me.