Peg’s symptoms first began about three years ago when she was 49 years old.
This is a little later than the usual onset of symptoms, being early to mid forties. She first noticed memory issues that were not really too bothersome but did make for some good jokes. About this same time her position as a business analyst with the Federal Government came to an abrupt end because of the Federal Budget deficit.
We were not too concerned as she has always found work quickly. Not the case this time…the memory issues were greater than she let on. After a year of interviews and no offers we decided to contact the Mayo Clinic in Jacksonville Florida where Dr. Wszolek had preformed numerous test on Peg twelve years earlier for the family disease, Pallido Ponto Nigral Degeneration. Peg chose, at that time, not to be given the results of the tests.
Dr. Wszolek requested Peg come to Florida immediately for more tests, even though he already had the results from twelve years ago. A simple blood tests can reveal the rare genetic disease. The disease is a cross between Alzheimer’s and Parkinson’s. The disease is a four stage disease with a prognosis of about eight years from onset to death.
There is no know treatment or cure. There are five families in the world with this rare disease. There are no trial studies at this time. Peg sees a movement disorder specialist every six months. Peg is in stage two of the disease and has had a very good response to a Parkinson drug, Carbidopa/Levodopa. It does not stop or slow the progression of the disease but helps with her symptoms.
Peg is not able to drive or work. Her days consist of walking the dog, doing yard work and visiting with the neighbors and family. She loves to travel when we are able. Her long term memory is still good but her short term memory is a challenge.
Peg is the most optimistic upbeat person that you will ever meet. She greets each day with a smile and hugs everyone. He favorite response to ” how are you doing?” is “rocking and rolling and loving life!”
Her advice to everyone is live each day to its fullest and never give up HOPE!