Sharon’s son, George & Matt’s wife, Betsy
This month’s blog is in memory of Betsy’s mother….
My mom, Harriet Wurzel, died two weeks before her 94th birthday. Harriet Wurzel was very active and enjoyed life even after losing my dad in 2012 and her son in 2021.
My mom encouraged me to enjoy life after Matt died. We all should enjoy living our lives! Thank you to Harriet Wurzel for being my mom and inspiring me!
1/1/2020……. Betsy lost her husband, Matt, due to Alzheimer’s disease on the same day I lost my mother, Sharon, due to Parkinson’s disease. It has bonded us together for life. We wanted to share our thoughts and ideas on tough topics in caregiving and send thoughts and prayers for others diagnosed and caregivers, so this BLOG was created in their memories.
The Tackling Tough Topics BLOG 5: Why education on your diagnosis is so important
This blog is dedicated to all those caretakers who care for a loved one with any disease and to those who have been diagnosed. We hear you; we see you, and we will never stop fighting until there is a cure!
Sharon’s son, George:
Diagnosis is an area that is somewhat new to me. My mother did not share much about Parkinson’s disease with me when she was diagnosed. She had Parkinson’s for around 15 years, but it didn’t start to progress drastically until her final four years of life….. I often wonder why she did not tell us, except she never wanted to burden others with her medical issues. I wish she did. Or was she just not aware that the medical field has advanced today? Many questions are still left for me, but I have learned through my research that the earlier an individual can be appropriately diagnosed, the more of an opportunity they may have to slow the progress through exercise.
“Making an accurate diagnosis of Parkinson’s disease can be complicated. To conclude, Doctors must carefully weigh symptoms, family history, and other factors. The standard diagnosis of Parkinson’s disease right now is clinical, explain experts at the Johns Hopkins Parkinson’s Disease and Movement Disorders Center. That means no test, such as a blood test, can give a conclusive result. Instead, certain physical symptoms must be present to qualify a person’s condition as Parkinson’s disease” (John Hopkins Medicine, 2024).
No matter the illness, it is critical to have the diagnosis as early as possible to treat it and ensure it is correct. These are some of the issues individuals and the medical community often struggle with.
Parkinson’s is a unique and terrible disease because there is no cure currently and no specific standard to test for. Doctors usually try to rule it out or depend on other tests for other areas. It is essential to research selecting the right doctor for you. We visited several doctors but could not conquer PD for my mother, sadly.
With Parkinson’s, doctors look for sure physical signs and symptoms — noticed by the patient or their loved ones — usually prompt a person to see the doctor. These are the symptoms most often noticed by patients or their families:
“Shaking or tremor: Called resting tremor, a trembling of a hand or foot that happens when the patient is at rest and typically stops when they are active or moving
Bradykinesia: Slowness of movement in the limbs, face, walking or overall body
Rigidity: Stiffness in the arms, legs or trunk
Posture instability: Trouble with balance and possible falls
Once the patient is at the doctor’s office, the physician:
Takes a medical history and does a physical examination.
Asks about current and past medications. Some medications may cause symptoms that mimic Parkinson’s disease.
Performs a neurological examination, testing agility, muscle tone, gait, and balance” (John Hopkins Medicine, 2024).
Again, I share my experiences with my journey with my mother as her caregiver as she fought Parkinson’s disease and dementia. I am not a medical doctor, so visit your local medical doctor specializing in movement disorders.
Matt’s wife, Betsy:
I can’t express enough by the importance of education about your diagnosis or your loved one’s diagnosis! In my opinion, I want to know all about a diagnosis and what to expect so I can prepare myself and my family.
It is essential to know our options for treatment, the side effects of mediciation and what we want so we can discuss options with our doctors. The saying “Knowledge is power” is very true.
We have every right to know what will happen to our bodies or our loved ones. Knowledge removes fears from the unknown. Everyone is different, but we can at least have guidelines to help us.
I wasn’t educated when my mom-in-law had Alzheimer’s, so I didn’t know what to expect or do when mom was sundowning or hallucinating!
I educated myself during Matt’s journey, and I was prepared for when Matt had hallucinations!
I experienced firsthand the importance of knowing about a diagnosis and how to handle what to expect better. I will tell you reading about what to expect and experiencing it is quite different!
We can give our loved ones a better journey when we are prepared. We can plan and make plans for the future. Ignorance is not bliss when it comes to our health. Please research your diagnosis or your loved ones with reliable resources. Be careful about misinformation, which can be harmful.
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George’s Biography
Dr. George Ackerman is from Brooklyn, N.Y. He now resides in Florida and works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman, on 1/1/2020 due to Parkinson’s Disease.
George wanted to honor his mother and continue to help in the Parkinson’s awareness cause, but he did not know how to bring about change. With my family, we started TogetherForSharon® to keep my mother, Sharon Riff Ackerman, ‘s memory alive and share the message of Parkinson’s Awareness and hope for a cure.
Today, https://www.togetherforsharon.com/ reaches thousands of individuals across the country to raise awareness of Parkinson’s disease. George currently interviews individuals throughout the Parkinson’s community, including various foundations, caregivers, and Parkinson’s warriors, to help share their stories and causes.
Betsy’s Biography
Betsy Wurzel graduated from Middlesex County Voc-Tech High School, where she received a License for Practical Nurse training and a diploma. Betsy has worked in various hospitals and a state facility caring for severely disabled clients.
Betsy began her advocacy when her husband Matt was diagnosed with Early-onset Alzheimer’s and was disappointed and frustrated with the medical community. Betsy created and founded the # Kick Alzheimer’s Ass Movement Group on Facebook in February 2019, so no one should ever walk their journey alone during caregiving or after caregiving!
Betsy was discovered by Jeanne M White, who is the Station Manager of Passionate World Talk Radio, in June 2018. Betsy talked weekly on Jeanne White’s Caregiver Connect series and encouraged other caregivers to share their stories. Betsy started Chatting with Betsy show in September 2019. Betsy wants people to know there are resources to help them and they are not alone! Chatting with Betsy covers a variety of topics. Betsy was nominated for the Caregiving Visionary Advocate Award in Nov 2021 and received the award!
Matt was and will always be my inspiration for all I do!
References
John Hopkins Medicine (2024). How Parkinson’s Disease Is Diagnosed. Retrieved from https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/how-parkinson-disease-is-diagnosed
All photos for educational purposes only.