Tova Gur Arieh tries to live a full life and do daily things with as much energy as anyone – despite severe challenges. Tova was born and raised in Israel and is living there together with her husband Jacob, working three days a week at a large NGO, the Israel Association for the Advancement of Children, Adolescents and Adults with Learning Disabilities and ADHD. When we asked her to tell us something about herself, she jokes: “As you see I am not a very young person, I am almost 68 years old… a mother of two and grandmother of four, almost five.” Tova loves to be with her family, see friends, and play with her grandchildren on the floor. Getting up from the floor has become more of a challenge in recent years. Two and a half years ago, Tova was diagnosed with Parkinson’s disease (PD). Her walking has become more difficult, she had some falls, and she could feel her hand strength decline. However, Tova refused to let the PD diagnosis keep her down on the floor. Instead, she acknowledged her diagnosis and continues to embrace life, for example by becoming a member of the Mobilise-D Patient and Public Advisory Group (PPAG).
So why did she decide to join the PPAG? Tova tells us: “I have joined because I think it is very important to hear the voice of the patients as well, and to get the patients’ feedback, no matter what kind of research or development one is doing regarding PD or any kind of movement disorder.” This is a powerful statement of her, and it gives us in the Mobilise-D team more steam to move forward in our endeavour to get patients and the public involved in our research. Tova joined the Mobilise-D PPAG after a researcher from the Tel-Aviv Medical Center approached her at the recommendation from her neurologist.
Her journey towards the PD diagnosis started more than 15 years ago when she had a CSF leak in 2006. “Eventually, in 2007, I had surgery to fill the leakage area which was not successful.” The doctor then told her that the main risk now would be meningitis, an infection to the protective membranes that surround the brain and spinal cord. “You know, life continues as it continues, and then a few years later, I started experiencing a drop foot and lost control of my right foot. Instead of walking as I should walk, I started tripping over my own foot. I think this was the first sign of PD.” However, no specialist she went to, including neurologists and neurosurgeons, could understand or tell her what the problem was. About 5 years ago, Tova met with a neurosurgeon specialised in the peripheral nervous system. “His observation was that it was a problem with the peroneal nerve in the right foot. After further consultations, I had surgery to release that nerve, which made no difference whatsoever.” Her symptoms worsened over the subsequent years, and her foot started not only dropping but also “clawing” due to spasms of the toes. She looked for solutions and saw a rehabilitation orthopaedist with whom she had a long discussion. “He said that he suspected Parkinson’s disease. He referred me to the movement disorder clinic at the Tel Aviv Medical Center for further exploration, which I did, and then was diagnosed. Actually, I was not surprised by the diagnosis, as I did a lot of reading and I thought that I may have PD.”
She acknowledged and eventually embraced the diagnosis, even though the first several weeks were hard to accept: “I started looking at the issue and thought – okay, this is the situation, and what do I have to do from now on?” She got her medical treatment and started working on her new condition, which can also lead to problems of sleeping. Sometimes things get tough, and then she needs pain medication. However, her spirit remains high and she tells us that some days are better than others are, but she wants to keep going and keep things as usual. She started to become more aware of her fitness, she walks more and more, and practices “conscious walking.” Her neurologist gave her recommendations for physical workout of at least 5 hours a week including 2.5 hours of aerobics, which she is determined to follow up on. Usually, she goes to the gym and has group training sessions together with people from the neighbourhood. In some of these group sessions, they perform the Feldenkrais Method, which is a method of small, gentle movements where they pay close attention to themselves and their bodies.
To make her life even more active she has joined a folkdance group with classes once a week, which she describes as a fun and aerobic workout. When we asked her if she learned the “moonwalk”, she laughed and said that we will leave that for the professionals. With all these exercises, she realised that she improved her mobility, and that not too many changes were needed in her life. On whether she has learned to live with PD she says:
“Yes, you are learning every time, every time you are facing a difficulty you have to learn how to live with it.”
“Walking is the difficult part for me, I have lost some strength in my hands, and I get some spasms that I must break off. My hands aren’t as strong as they used to be.”
Now, every walk, hike, or time outside the house counts for her as a training activity in order to strengthen her body, become stronger, and keep healthy. She continues her social and family life, seeing friends and enjoying the happiness of life such as playing with her grandchildren: “When I’m sitting down on the floor to play with my grandchildren, getting up can be more difficult,” she says and continues: “Falling down is easy, getting up is difficult,” and starts laughing again.
Tova’s experiences and positive attitude are truly inspirational for all and a great example of a positive view on how to get up and keep yourself mobilised even when a disease makes you fall.
A heartfelt thanks to Tova for sharing with our readers and us her personal story and her journey from an active healthy person to an active person with PD – and now an active Mobilise-D PPAG member.