By Jeff and Mary Anne Woofter
(Editor’s note: We are so pleased to be able to bring you “Life with the Parkinheimers”. When we heard of Jeff and Mary Anne’s diagnosis, we like everyone else who knows this extraordinary couple were devastated. But, when we heard of their plans to communicate their journey with the public, we knew the opportunity to share that journey with them was valuable to our readers.)
Greetings Folks! We have been given the opportunity to contribute a column on a regular, but not necessarily weekly, basis here with The Hometown News. We started a Facebook pWEage and YouTube channel, with the same name as this column, a little over a month ago and Tamara contacted us about contributing to our local digital newspaper. As you will see, if you choose to read our column, we are not professional writers.
To give you a little background on us and explain what we are trying to do, Jeff was diagnosed with Parkinson’s Disease in October of 2018. He went to a neurologist to get treatment for a pinched nerve in his neck. The neurologist asked Jeff during the appointment about any other issues. Jeff told him about a slight twitch in his left index finger, his voice was weak and that he had an appointment scheduled to see an ear, nose & throat specialist. The neurologist looked at us and told Jeff that he could cancel that appointment. He said, matter-of-factly, “You have Parkinson’s”. Jeff walked into the appointment with a pinched nerve and left, less than an hour later, with a life altering diagnosis of Parkinson’s Disease (PD).
Fast forward to February of this year. Mary Anne was diagnosed with Early Onset Alzheimer’s Disease (EOAD). Her diagnosis was just as devastating as Jeff’s, if not more so, but it wasn’t unexpected. At least it wasn’t to Mary Anne. You see, Mary Anne’s grandfather, father, and older brother had all been diagnosed with Alzheimer’s or another form of Dementia. She later found out that her great-grandfather also had Alzheimer’s, but, at the time, they accused him of being insane. They didn’t know enough about Alzheimer’s Disease in 1946 to know the difference. A little over three years ago Mary Anne started taking Neuriva as a way to hold off cognitive decline and, with her family history, she wanted to be evaluated to get a baseline in the event she started to decline.
Mary Anne’s cousin, Ashley, works at the Rockefeller Neuroscience Institute (RNI) at WVU and had recommended that Jeff go there for the treatment of Parkinson’s back in 2020. RNI is one of the foremost Brain Health Centers in the world and their Executive Director, Dr. Ali Rezai, has been featured on the news program 60 Minutes twice. Jeff has received top-flight care there including the following: mental health services, speech therapy, Botox injections for rigidity, and Deep Brain Stimulation surgery for tremor and rigidity.
When it came time for Mary Anne to be evaluated, she knew that RNI was the place to go. Ashley had worked with Dr. Marc Haut and recommended she see him. Mary Anne was given a cognitive exam and an MRI last November. The results of the MRI and cognitive tests revealed mild cognitive impairment, which Jeff has also been diagnosed with, and, in Mary Anne’s case, it warranted a PET scan in January of this year. In February we met with Dr. Haut and Mary Anne was told she has Early Onset Alzheimer’s Disease. To Jeff, it was a gut punch just like his diagnosis, but to Mary Anne, it was almost expected.
On the drive home that day we discussed how we would tell our kids and their two spouses. We arranged a zoom/conference call that evening. We told the kids about Mary Anne’s diagnosis, that it, like Parkinson’s, is incurable, but she would be getting infusions every two weeks for at least 18 months of a drug named Leqembi that has been shown to slow down the progression of the disease. Our son, Brandon, said, “From now on I’m calling you the Parkinheimers”. We all busted out laughing. We needed that!
After Mary Anne’s diagnosis we both started looking for information and support groups. What we found, often, were groups that were focused on the negative aspects of EOAD and not much support from the support groups. So we decided to use the name that Brandon had given us to start a Facebook page and YouTube channel. Now, we’ve added this column. We want it to be a place where we could help to educate, inform, support, console and even humor those with chronic health conditions, their families, caregivers and even our friends.
We share a strong faith, have beautiful, loving, and supportive families, and strong friends to help us through our journeys with chronic diseases. We know that not everyone can be that fortunate. We would like to help if we can. In these columns we will address everyday issues that we face, talk about various medical, legal, spiritual, emotional and, hopefully, humorous issues/situations that are presented to us on a daily basis.
Thank you for reading!
The Parkinheimers
