We need a brand-new approach when unveiling a disease diagnosis in the United States. In my case, when I was 23 and given the diagnosis of Parkinson’s disease, all that I really remember was that this illness was progressive, chronic, degenerative, and incurable. I don’t remember an ounce of compassion or hope from this neurologist who I bounced almost 40 years ago.
Compassion, Hope, & Education
Receiving life changing information without having access to resources and answers only generates fear, anxiety, and worry—just what someone with Parkinson’s disease needs to avoid. Newly diagnosed people with any illness
must be eased into a diagnosis along with options and available resources to further their education. The healthcare community needs to take a hard look into how to inject compassion and hope into the delivery of a diagnosis. A multi-faceted approach that includes education, support, opportunities to ask questions, and support for the carepartner and family should be immediate – not at the 3 month follow-up appointment. A carefully crafted roadmap of options should be available. Without awareness and understanding your illness, you cannot garner the best options to making your condition better. Ignorance and avoidance to the reality of the situation can only lead one way, and that is downhill.
Keys to Moving Yourself Forward
As simple as it may sound, your perspective on taking care of yourself will determine how you do in the future:
- You must lower your level of stress and anxiety.
- Keep a positive attitude.
- Know that you can improve.
If you are someone diagnosed with Young Onset Parkinson’s Disease:
- Pace yourself.
- Find a good neurologist who is a certified movement disorder specialist.
- Build a care team.
- Join a support group or create a support structure.
- Stay informed on medications and options.
Explore your options and do not stop looking for something better. Be flexible to consider new therapies. Stay social, keep physically active, and mentally challenged every day.
