DIAGNOSIS: PARKINSON DISEASE –  What Next?

Parkinson disease is a progressive Neuro-degenerative disease characterized by the brain’s inability to produce enough Dopamine (Neurotransmitter). Because no two people with Parkinson disease are exactly alike, there are many possible symptoms experienced by each individual person.  There is no definitive cause though there appears a good case in the literature that it is largely environmental – toxins in soil. Firemen have a disproportionate amount of PD diagnoses. It is not a genetic disease per se but it is common in families where more than one member has Parkinson disease.  Diagnosis: Some folks having had experience with someone with PD will recognize the symptoms. Many doctors are better at diagnosing now.  There is a DAT scan that can be done but the usual way to diagnose PD is observational of a host of common symptoms.

Early Symptoms:

*Flat affect, Depression

*Speech changes

*Disinterest in things

*Slowness, fatigue, freezing

*Rigidity

*Bent over while walking, falling

*Loss of sense of smell

*Not moving arms while walking or shuffling of feet

The most common early symptom on is a tremor, which now is largely controlled by Medication.

As with any medical diagnosis, it is a shock to the system! This information has to be processed emotionally and psychologically. You may wish to seek a second opinion. But have a good cry as you begin to process what this means. After diagnosis, your day to day will likely remain as it is for some time.This is the mild or “honeymoon” phase. Learn more about the disease. Decide who you wish to share this with now, later or not at all.

First thing to do: BUILD YOUR TEAMS 

Personal – family, friends, volunteers, clergy and whomever else you choose in your inner circle. Parkinson disease affects the entire family! Though couples go through this together, each spouse is having their own experience.

Professional – *Find a Movement Disorder Neurologist.  Parkinson disease is a movement disorder. Many Neurologists focus more on Alzheimer’s disease and other forms of dementia.

*Meet with your Elder Law Attorney or get an Elder Law Attorney. Again, other decisions will need to be considered. You or your spouse may be a Veteran and entitled to some benefits down the road. You may wish to amend Durable Powers of Attorney, Medical Surrogates, and Living Will or other legal documents.

*Consult with your Financial Advisor as some financial decisions may need to be reworked. Other streams of income may be considered (VA Benefits, Medicaid and other government programs).

*Start building your exercise/movement regimen. With PD a goal is maintain the abilities you have. Physical Therapy will help with your balance, gait and strengthening.  Build in other forms of exercise and movement so that each and every day you are moving – walk, swim, biking, stationary bike, dancing, boxing… find things you enjoy and mix it up!                                    Movement produces Dopamine.

* Invite a Certified Aging in Place Specialist (CAPS) into your home for a safety assessment. Take a good look at your home. Is this where you plan to age in place? Is   Florida where you plan to remain? Whether you plan to remain in your current home or plan to move, safety becomes paramount.

Family Participation 

*Keep learning about the disease – Nutrition, Speech therapy, treatments, medications and basically the timeline of Parkinson disease. try a Support Group.

*Be in touch with National and local Parkinson organizations. They have programs, education, research updates, and a hotline and are resources.

*Create a Care Plan Schedule.  Spouses and other family members are the typical “care partners”.  It is imperative for the Primary Caregiver to take care of him or herself.  This includes physically, emotionally and spiritually. Both of you can keep your relationships, maintain hobbies and interests. It will make you a better care partner to have “time off” to yourself.

*Review your Long Term Care policy to see if there is an “Elimination Period” and the triggers needed for coverage. They are customarily “Personal Care” needs – any assistance with bathing, walking, dressing, transferring, toileting or feeding.

*Begin a relationship with a licensed home care provider. Have it in place in case of an unexpected fall or emergency.  Just a few hours a week of “Respite Time” can make huge difference to both the person with PD and their primary care partner.

Caregivers Take Note

No one can sustain being a solo long-term care-partner without negative repercussions to their own well-being. Therefore, respite time for the primary caregiver makes a positive difference.No one has a crystal ball but we do know the course of the disease and somewhat of a time frame. Scientists, medical professionals and researchers around the globe are working on Parkinson disease and other brain diseases so HOPE is real for some breakthroughs!

Your life does not have to become all PD all the time. Keep things as “normal” as you can.  Doing too many things at once is exhausting, so build “rest times” into your day.. However, as the condition progresses, be aware of the resources around you. South Florida has many such resources: choices of Movement Disorder Neurologists, Physical, Occupational and Speech therapist focusing on Parkinson disease. Lots of PD dedicated movement activities, classes, and programs.

Since PD unfolds over many years, you will want to stay ahead of progressions as much as possible by modifying all plans regularly and accordingly.