What has your journey been like since diagnosis?
Although diagnosed in 2010, the same movement disorder specialist missed my evident Parkinson’s symptoms and diagnosed essential tremor in October 2004. As she left the exam room in 2010, she said, “Your husband better keep his job because you’ll need the insurance” and “You’ll be bedridden in 10 years.”
Determined to prove her wrong, I immersed myself in exercise and, more importantly, sought a different movement disorder specialist. By 2015, my symptoms were progressing even though I was very sensitive to carbidopa-levodopa treatment. I ended my 35-year career in health care when I noticed subtle changes in my executive functioning. My MDS and neuropsychologist agreed that my “highly toxic work environment” was significantly and negatively affecting my symptoms and advised me to seek early retirement.
Pharrell Williams’s song “Happy” played as I left work on that final day, and I’ve never looked back. Six months later, my MDS advised there was nothing more that he could do medically to control my dyskinesia, which occurred even on very low doses of carbidopa-levodopa. On January 7, 2016, I was blessed to have deep brain stimulation (DBS).
I had an immediate positive response and continue to thrive with few obvious symptoms. I am blessed to be able to live my best life, and I’ve made a conscious decision to lead by example and aid others in finding their way to live well on their journey with Parkinson’s.
How do you live well each day?
I choose to be positive and hopeful and to live each day in its moment. Having lived with health issues throughout my life (from congenital hip dysplasia to infertility and breast cancer to Parkinson’s disease), I’ve consistently chosen to have the perspective of “If not me, then who?”
Living by example, I co-founded, developed and evolve a medically integrated program for people with Parkinson’s at a local wellness center. Coordinating medically evidenced-based practice into various types of exercise, along with socialization, education and support, the program is one of a kind in our area and boasts a high level of participation. Participants engage in Parkinson’s specific exercise classes, forced pace cycling, strength training, yoga, tai chi, qidong, shadow boxing – whatever is right for them.
I enjoy practicing yoga four times a week and participating in exercise classes and cycling twice a week, and my husband and I love our adventures as we ride along the San Diego coast on our new tandem bike.
I firmly believe in paying it forward and am gratified by the opportunities I have to teach newly diagnosed people with Parkinson’s about their disease and tools & techniques on how to live well. Even more, I am gratified when the look of fear and anxiety changes to relief and hope as I and others share our personal stories.
Knowledge and education give us power and hope gives us the energy to fight another day. And helping others along their journey – whether through classes or one on one – enriches my life as much or more as those I talk with.
I am quite involved in the San Diego Parkinson’s community, serving on the Board of Directors of Parkinson’s Association of San Diego, speaking at support groups and with individuals, and, most recently, sharing the incredible resources and support offered by the Davis Phinney Foundation as an Ambassador.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
Parkinson’s is highly complex and individualized. Management of each person’s symptoms must be done as a team – with the person with Parkinson’s as much of a decision maker as their physician. The best teams are headed by the person with Parkinson’s and their movement disorder specialist. Just as in life in general, movement disorder specialists vary in their abilities, knowledge, compassion and passion. If your neurologist or MDS is not reasonably meeting your needs, is not listening to you, is not working with you and does not provide you with hope while being realistic, find one who does all of these things. Don’t settle, ever!
MARTY ACEVEDO’S PHILOSOPHY
What do you wish everyone living with Parkinson’s knew about living well?
I wish that everyone with Parkinson’s knew how important exercise is. I wish people with Parkinson’s could discern between evidenced-based recommendations and anything that approaches quackery. My wish for each person with Parkinson’s is that they find their best way to live their life well – including exercise, mindfulness, a positive attitude and partnership with the best health care professionals for them. My last wish is that we each acknowledge a level of acceptance of our limitations, while not allowing those limitations to keep us from living our life well. And finally, exercise, exercise, exercise; find joy in everyday life; stay hopeful and optimistic. Live your life!!!
Marty Acevedo is one of the newest members of our cohort of Davis Phinney Foundation Ambassadors. Our Ambassadors are “living well leaders” who share resources and information throughout their local and regional communities to help people take action and improve their quality of life with Parkinson’s. Connect with one of our Ambassadors and begin your journey today of living well with Parkinson’s!
SHARE YOUR VICTORY
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®
Your story, like Marty’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.