Adjusting to life with Parkinson’s means focusing on what you can do

Positive thinking helps keep this family strong

Jamie Askari avatar

by Jamie Askari |

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I read a fantastic column on another BioNews site this week. (BioNews is the parent company of this website.) It was about how columnist Robin Stemple missed out on travels and experiences with his family because of his rare disease, facioscapulohumeral muscular dystrophy. I was amazed at how they planned every tiny detail so that he could remain safely at home while his wife and daughter traveled through Europe. It was both inspirational and eye-opening to read his column.

When my husband, Arman, was diagnosed with early-onset Parkinson’s disease in 2009, we vowed not to permit the diagnosis to change our lives. We planned to go about our lives normally and not let Parkinson’s get in our way. Since Arman was only 38 at the time, we had a lot of life ahead of us. We had hoped that we would never have to make compromises because of the disease.

Almost 15 years later, we’re still doing our best to live an active and fulfilling life despite the weight of Parkinson’s on our backs. The challenges and limitations that accompany Parkinson’s disease have progressed over the years. These changes have forced us to become more flexible and realistic in our attitudes and expectations. And like Stemple, we are starting to realize that certain activities may not be safe or optimal for Arman.

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Shaping our perspective

When it comes to things like moving our kids to college, and to new cities after college, they automatically fall into my lap. It has been a blessing for me because I love that kind of thing. I probably wouldn’t trust Arman with furniture placement, picture hanging, and accessorizing anyhow. But I know he misses being a part of the process and always seems sad when I leave to move one kid or another. Missing out on even minor events can affect my husband emotionally. But he also understands that keeping him safe is my top priority.

My oldest daughter and I recently shared a well-needed weekend vacation. We strategically planned this trip for when our son would be home to spend time with his dad. Our trip involved changing airplanes, a lengthy airport layover, and many unknowns, as this was the first time we had traveled to this location. Like the move-ins, I know Arman was disappointed to miss the getaway. But with so much travel in such a short time, I worried it would be too much for him to handle.

Instead of being sad or angry about what Arman can’t do, we must focus our energy on all the wonderful things he can do. This type of positive thinking helps to keep our family strong and get through the hard times.

While moving and some types of travel might be too much for Arman, he is fortunate to be able to spend plenty of quality time and make beautiful memories with our children. As the late basketball coach John Wooden once said, “Do not let what you cannot do interfere with what you can do.”

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


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