“DON'T STOP!” Views From A Parkinson’s Long-Hauler

“DON’T STOP!”

Views From A Parkinson’s Long-Hauler

Frank Rumoro, PRO Advocate

Being diagnosed with Parkinson’s in 1999 at the age of 36, I have learned that keeping a positive attitude, maintaining a sense of humor, and staying active are the best ways to combat my disease.

    Over the last 22 years I have experienced 137 in-office neurologist visits and five telemedicine appointments, switched neurologists seven times (primarily due to moving) and underwent two surgeries (deep brain stimulation and medialization laryngoplasty). I am facing one more surgery at the end of this year. 

    I still remember the first few physician visits very clearly. I was started on medications, advised to take it easy and not overdo, and recommended that I use a cane or walker. At 36, I was basically told to become a couch potato — and that was not who I was. I was a master rank in Judo and Koryo Gumdo (Korean sword fighting), a Little League coach, a professional musician, and a full-time operations manager with responsibility covering three states. I felt the need to keep moving and stay physically active.

    I learned that Parkinson’s is a roller coaster of ups and downs, with periods of good times and challenging ones. I found that being ‘active’ in any form made whatever period I was in considerably easier, always adjusting the activity to my ability level. My activities have ranged from walking to the mailbox and making dinner for my family to becoming a Rock Steady Boxing coach, enjoying water aerobics, and hiking mountain trails. 

    I choose to do things that are fun and of interest to me. If you have Parkinson’s and are currently active, that is great, but maybe it’s time to kick it up. If you haven’t been moving, start with something you enjoy that also fits your ability level. Don’t judge or measure your activities against anyone else. It is all about you! I encourage you to not be afraid and push yourself a bit.

    If you are unsure where to start, there is a wonderful virtual support group named “Movement: Use it or Lose it” that I found in Parkinson’s Resource Organization’s online. It is a live, virtual class led by Brandon Rosi, DPT, CSCS, Cert MSKUS. He is a Doctor of Physical Therapy and certified in LSVT BIG, an intensive program emphasizing exaggerated activity to compensate for Parkinson’s movement and speech symptoms. He helps people understand why moving is so important and teaches which movements are best.

    Often times we feel that we can no longer do something, but if you think about it, you may realize you haven’t tried that task in a while. Even with Parkinson’s, practice can lead to improvement.

    There are many physical, mental, and emotional benefits to keeping yourself active. Physically it can improve balance and agility; mentally, it helps with focus and improves memory; and emotionally, I feel it fights my anxiety and depression, making it easier to stay positive.

    Keep your mind sharp, too. Read, play crossword puzzles, try Sudoku, internet games, trivia and anything that stimulates your mind. Volunteer.

    “It doesn’t matter how slow you go, as long as you don’t stop.”

For more information about Frank and resources available through PRO, call 877-775-4111, go to the website at ParkinsonsResource.org/ or email us at  info@parkinsonsresource.org. PRO is inspired to have Frank working in our office.