I've Just Been Diagnosed with Parkinson's

When you first get diagnosed with something as off-putting as Parkinson’s disease, the first thing you might do is get depressed. It is a very natural reaction. It might be the same if you were diagnosed with cancer, dementia, including Alzheimer’s disease, advanced lung, heart, kidney and liver disease, stroke, and other neurological diseases, including motor neuron disease and multiple sclerosis, Huntington’s disease and/or muscular dystrophy. There are no cures for any of these. 

So, What To Do? – Be certain that you have received the correct diagnosis. Did you hear Parkinson’s disease, or did you hear you may have “atypical Parkinson’s”, or “Parkinson’s-like”, or “Parkinsonism”? These all have different meanings and may mean that you do not have “generic” or “idiopathic” Parkinson’s.  

Get A Second Opinion – Parkinson’s is misdiagnosed around 50% of the time. If you were getting a bid on something that might be wrong with your home, car, or other asset you probably might consider getting more than one opinion (what to do about the situation). Your body is the most important asset you have. Treat it well... get a second opinion. It is highly suggested that your second opinion be given by a movement disorder specialist. A movement disorder specialist is a medical doctor, neurologist with additional training in Parkinson’s disease and other movement disorders. This type of doctor typically has extensive knowledge of “atypical”, Parkinson’s-like,” “Parkinsonisms,” “Parkinson’s” therapies and ongoing research.

Start Educating Yourself – Find out about the disease that you have or may not have. Our website has a robust amount of information, including an education on the Five Stages. Join a support group and start learning from others... what do they do? How do/did they handle the diagnosis? What role does the partner hold? More subjects to investigate, learn about and execute:

• Legal and Financial Planning
• Insurance issues
• Family Planning
• Therapies to keep the disease process in abeyance
• Therapies available to create a greatest Quality of Life
• Pharmaceutical vs holistic symptom management
• Creating your bucket list

What does your Village look like? It takes a Village to get through the journey of Parkinson’s and PRO developed a virtual, vetted, video-driven Resource Directory called The Wellness Village.

You might experience all the following emotions, and typically in this order presented; 

D = Depression
A = Anger
B = Bargaining
D = Denial
A = Acceptance

When you get to Acceptance, you can, now, Remember To Live. Parkinson’s is not a death sentence; it is a new way of living and a new job. It takes lots of effort from everyone in your family. 

Parkinson’s Resource Organization (PRO) is here to help. We are “Working so no one is isolated because of Parkinson’s.” We’ve got your back.