Mariia Iaroshenko’s grandmother was diagnosed with Parkinson’s three years ago after she started experiencing pain and tremors in her lower and upper extremities. Once healthy and active, the disease has greatly altered Valentina Shershun’s quality of life but not her spirit. Diagnosed at 76, she is the only member of the family known to have Parkinson’s. Mariia jokes her grandmother loves to be first at everything and this was no exception. Mariia shares her grandmother’s inspiring story and her hope for a cure.
My grandmother was facing difficulties in walking long distances, lifting her arms, and doing her daily routine. At first, there was no suspicion that something was wrong. My grandmother was always on the move supporting a healthy lifestyle. We attributed her symptoms to advancing age and fatigue or stress. But her symptoms became more prevalent, and she began experiencing tremors, vertigo, and weight loss. That’s when our family sought medical care and to our regret, Parkinson’s was confirmed.
What is most challenging for her?
Accepting the gradual loss of independence is difficult for her. Every day brings a new challenge and she sometimes has difficulty accepting her current life and regrets what she has lost. She also perceives things differently than they are which complicates learning to deal with the reality of her situation and failure to embrace what now makes her different than everyone else. To some extent, the denial of her diagnosis makes her stronger, allowing her to devote all her efforts on fighting her own body. She is stubborn about doing everything on her own and determined to make life work for her and not against her. She knows she has Parkinson’s, but Parkinson’s does not have her.
What do you most admire about your grandmother?
An eternity would not suffice to tell or show how much I love my grandmother and what she means to me. She is an incredible woman with determined character, incontrovertible fortitude and unconquerable spirit. She has an exceptional feature to get what she wants against all odds and it is very inspiring to watch her while she is reaching her goals because these are her own small victories of great significance. Her strength, intelligence, and will to live are far beyond the capabilities of a normal person.
I admire her courage in facing her disease. She is the one who we should take lessons from in our family because my grandmother is a real fighter who truly knows how to defend against adversity and not give up on the joy of life. I am thankful to my grandmother for making my childhood full of unforgettable memories of our time together, for sharing her wisdom as I transitioned to an adult, and for bringing love, care and warmth into my world. The memories given to me by my grandmother are forever and deep in my heart.
What is her treatment?
At first, we had trouble finding a treatment that worked because my grandmother did not respond favorably to the medication prescribed. It took time for her doctor to formulate a plan for a proper multi-drug therapy. Her treatment consists of Levodopa/Carbidopa in combination with Monoamine Oxidase and Cholinesterase inhibitors, Amantadine and Quetiapine Fumarate drugs. Sticking to a strict drug schedule plays a key role in managing her symptoms. In addition, she is trying exercises aimed at improving walking, stiffness, tremors, speech, etc. Her treatment regimen helps her regain muscle tone, maintain coordination, and balance. She is also more alert and has more energy.
How is she doing?
To be honest, it depends…my grandmother has good days and bad days. Once in a while, it seems that she is perfectly safe and quite comfortable because there may be a break in her illness which gives her strength and energy to enjoy life and to be hungry for more. For that moment, my grandmother is herself again. She is in a good mood receiving visitors, carrying out fascinating conversations, playing cards recklessly, climbing up and down stairs like lightning and just having a leisurely time with her family.
But then there are times when her health declines and has attacks presented with spontaneous falls, anxiety, insomnia, hallucinations, and partial disruptions in memory which sap her energy and make it difficult for her to bounce back when the episode has passed. The best solution in this situation is to let her rest and recuperate. As a family we just need to be there for her because this is something we can’t prevent. It just happens.
Has she ever participated in a clinical study?
No. About 12 years ago my grandmother had an operation putting her on cardiac bypass. Because she takes Beta blocker family medications together with Statins and Angiotensin II receptor blockers drugs she does not meet the inclusion criteria and cannot participate in clinical trials.
From a caregiver/loved ones perspective—what is most challenging about Parkinson’s Disease?
To my way of thinking, the main barrier of living with Parkinson’s Disease is to face the fact that you cannot perform the same way you always did before and to adapt to another path of living. People with Parkinson’s have an attitude about wanting to remain who they were before their diagnosis which is self-defeating. They should understand that life is all about evolving and everyone has their own story. The key is self-discovery and how you react to it. They should welcome all that is unique about them including Parkinson’s.
Are you encouraged by recent Parkinson’s research?
The industry is doing everything possible to make progress happen quickly and to substantially change the incidence, prevalence, and advance of Parkinson’s. Existing drugs have a positive effect on slowing the progress of the disease as well as prevent its development in those who are at genetic risk of the condition. I am grateful to treatment advances that that provide professionals with the opportunity not only to investigate new products and bring them to market, but in addition, allow them to study how different factors affect the disease. Our family is inspired by the launch of Parkinson’s research worldwide because it gives support and reason to hope that Parkinson’s will be taken under control allowing patients like my grandmother to live the fullest life possible after diagnosis.
As someone working in the clinical development industry, what is your hope?
As a person who is closely in touch with the field, I do believe that one day we will find a cure that will erase Parkinson’s from the world forever.