I am a PR/Marketing person by trade. I know a lot of marketing jargon. My favorite is “tool kit.” Now, for those who know me, you know I am not referring to a set of tools 🛠 cause I can’t build or fix things (besides wishing to be a famous singer, I always wished that I was handy)! But, this morning I had a thought and it was something about a “tool box” or a “Tool Kit”
This made me start thinking. What if the second I got my PD diagnosis (you know the minute my life changed forever, Lee and I sitting in shock, cying watching the Dr.’s lips move but not hearing anything), my wonderful first Doctor handed me a “Parkinson’s Diagnosis Tool Kit.”
Inside of this tool kit, I would find three envelopes.
The first envelope would include the “Questions for the Dr.” to be asked as soon as you stop crying and can speak again (you know when the Dr. is staring at you like you’re a total idiot - oh sorry that was my Dr.)
What should I expect in the first month, 6 months, 1 year of diagnosis?
What types of side effects should I be prepared to encounter in the first month, 6 months?
Do I need a second opinion?
A good psychiatrist referral? Someone who does therapy and specializes in PD patients (thank god for Dr. Maurie Mintz).
The second envelope would include:
A reputable Boxing Gym referral (www.boxingforparkinsons.org)
A name of a mentor you can call when you are can finally get up off the couch and can form words long enough to make a phone call.
The courage to pick up the phone and call this person.
A list of the possible things you might experience - dystonia, dyskensia, depression, anxiety (remember my original Dr. said that anxiety is not a part of PD). Sorry, but WTF?
The third envelope would be a letter to my husband that tells him that no matter what I do or say, how down I might get or when I don’t feel like coming out of my room for the day, that I still love him. That, I just need a moment. That, I will feel better when my “spell” (what I call my down days) is over. That I will laugh again.
So, if you happen to meet me at a boxing class, I will immediately start talking to you and will be your own private Parkinson’s “tool kit” - to get you through the early days, so you can start to live again!
Unfortunately, the only thing I got from my doctor were a few pamphlets and an “I will see you in four months.” Her bedside manner was atrocious. Her empathy was non-existent. She shamed me! She made it worse. That is unforgivable.