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I felt compelled to share this content with my audience because I know people in our community who have struggled with neurogenic orthostatic hypotension (nOH). Educating ourselves and raising awareness for others are vital components to living well with any health condition. As an advocate for Parkinson’s, I like to help fellow advocates spread their message. The condition of nOH can be mistakenly overlooked or discounted, but should be addressed and discussed with your physicians!
Keith is an advocate for nOH and shares his personal message of living with nOH and Parkinson’s. Keith was kind enough to share his answers to some questions I had about his journey with nOH.
How did you discover that you had nOH?
I began experiencing symptoms of neurogenic orthostatic hypotension (nOH) in 2015 when I was on a family trip in Europe. I remember feeling lightheaded and falling in the bathroom and not knowing why. I didn’t think much of it until years later when my neurologist and primary care doctor diagnosed me with nOH after taking my blood pressure in different positions and pinpointing that a drop in blood pressure was causing my lightheadedness which lead to my falling.
Did the symptoms of nOH frighten you or shake your confidence?
Yes, I was really spooked by my symptoms, as was my wife, Linda. We were renovating a bathroom in our house and I fell down the stairs. That was a turning point for me and it caused a lot of concern for both of us.
What symptoms of nOH trouble you most?
The lightheadedness and falling as a result were my most troubling symptoms. I was lucky enough to not be injured after falling down the stairs, but the possibility of it happening again was really troubling.
How do you manage your nOH symptoms?
I take medication that helps regulate my blood pressure and I’m careful to take my time when standing up and moving around. My doctor also told me to drink a lot of water and increase salt in my diet, which helps keep my blood pressure from falling. I also work with a physical therapist to stay active.
How do you balance your exercise regimen and your nOH?
Staying active is something that’s really important to me. I used to go to the gym to work out, but I’m not able to do that anymore due to my nOH symptoms. Instead, I work with my physical therapist to help keep my body strong and stay fit.
How does nOH impact your daily activities?
I like to focus on the things Parkinson’s and nOH have brought into my life rather than what they’ve taken away. My wife and I started a nonprofit called Parkinson’s Fitness, which offers personalized exercise training classes and movement programs in Boston’s North Shore. We wanted to provide a safe and welcoming environment where people with Parkinson’s could meet their physical and cognitive goals through ability-based balance, strength and movement classes, as well as specialized art and music programs. During the pandemic, we quickly adapted to virtual classes to offer our community a safe environment to stay connected and keep active.
How do you and your wife cope with nOH?
nOH and Parkinson’s can rob you of a lot of things. It hasn’t been easy for me to have to depend on others so much and to not be able to do some of the things I used to do. I try to keep a positive mindset though and focus on what I can do instead of the things I can’t do. My wife also focuses on the positives but makes sure to take time for herself, too. As a care partner, it’s important for her to recharge and make her own health a priority too.
If you had one piece of advice about your nOH experience, what would you say?
My advice would be to talk to your doctor as soon as you begin experiencing symptoms of nOH and to build a healthcare team that includes a movement disorder specialist and a physical therapist. They’ve been instrumental in helping me manage my symptoms. Everyone is different though, so talk to your doctor about what’s right for you. I’d also say to keep a positive mindset and live your life to the fullest despite your diagnosis.
Many thanks to Keith for answering my questions and sharing his personal journey with me. If you have any questions about nOH or would like more information, I encourage you speak with your neurologist/movement disorder specialist or visit nOHmatters.com. Getting nOH symptoms managed with the help of your healthcare team can help you to prevent stress and serious repercussions.