DBS (deep brain stimulation) surgery is a real possibility for me in the near future. My miracle medication, Levodopa, is starting to lose its effect reminding me what I try to forget — Parkinson’s is a regressive disorder. At my most recent neurologist appointment, I had a levodopa challenge test. I had to be off my miracle medication for twelve hours to gather data on how effective this medication is for me. This information is needed for the brain surgery. For twelve hours I had to be reminded of what I try to forget — this disease is not going away and it was frightening to live in that body for twelve hours unmediated.
During the same twelve unmediated hours, I received heartbreaking news that a dear friend’s husband has Alzheimer’s.
As much as I try to forget– there is no cure for many neurological diseases that ravage and destroy. Yesterday forced me to think about what I try to forget– the late stage of these diseases.
I try to forget — some day that will be me. Even though this is a bit sad, I am going to tell you what I don’t want you to forget — when I am in that late stage. Then, you fill in the blank for your loved one.
Don’t forget — this is not the real me. I am not this body but trapped inside it. Don’t forget.
Don’t forget — my smile and how I am not very photogenic. We laughed about this often.
Don’t forget — that I am funny. Tell the stories of all those funny moments we shared.
Don’t forget — that I love dogs. It lifts my heart to have a fur ball snuggled next to me.
Don’t forget — that I am passionate about children’s causes and bettering their lives.
Don’t forget — that I am a fighter. I am still fighting.
Don’t forget — that I’m your friend. I would give you a hug if possible.
Don’t forget — I am your sister. You still need to ask to borrow my clothes.
Don’t forget — I am your mom. I love you dearly for who you are, not what you do. I brought you into this world and I may not be able to take you out now, as the saying goes, but you know my expectations– men of character.
Don’t forget — I am your wife and even though you now are my caretaker, I am passionate for you, adore you, still love your legs. Keep biking. You have great legs.
Don’t forget — the real me. I’m just trapped inside this mortal body.
Don’t forget — to be happy. I believe in Jesus. You don’t have to worry about me. I look forward to heaven where I will be greeted with a new whole body.
Don’t forget– I love you.
For your loved one, what would they say.
Don’t forget — ________.
While I am still in the earlier stages and don’t expect this to be me for a long time, and I am still praying for a cure. I want to remind you some day — don’t forget.