Caregiving and Parkinson’s progression: Your role in the team

Last updated Aug. 19, 2025, by Jamie Askari

My journey as a Parkinson’s caregiver started more than 15 years ago, and my goodness, the time has gone by very quickly. It seems like only yesterday that I was saying to my husband, “I think you may have what Michael J. Fox has.”

The irony of that is that my husband is a physician, and yet I was the one who came up with his diagnosis.

The early days: Recognizing and responding to symptoms

My husband Arman was working as an invasive noninterventional critical care cardiologist when he was diagnosed. After many years of medical school and training, including residency and fellowship, he was finally practicing medicine.

He had dedicated his life to helping others and enjoyed mentoring and teaching residents and fellows. He loved the intensity and the pace of attending in the critical care unit and never minded the extra hours of being on-call; just the opposite, he loved it.

His first symptoms of early-onset Parkinson’s disease began in his late 30s. The symptoms presented as slowness, stiffness, and an intention tremor, which only happens with a purposeful movement.

Becoming a partner in the diagnostic process

Despite the early diagnosis I suggested — based on reading about the actor’s symptoms — Arman obviously needed an actual medical doctor to diagnose him. He underwent a multitude of tests and exams, and we spent a lot of time with various specialists, hoping for an answer that would explain the issues that he was experiencing.

I vividly remember the day we saw a local neurologist. I sat closely beside my husband to remind him of my unconditional support. The doctor had Arman do the same tests that many other doctors had him do:

• There was the good old finger tap test, where he was instructed to tap his index finger against his thumb as quickly and widely as possible for about 15 seconds.
• Then, there was the foot tap test, where he sat with his feet flat on the floor and rapidly tapped his toes while keeping his heels on the ground.
• The last test that sticks in my mind was a drawing test, where he was asked to draw circles on paper.

Right after the circle test, I remember the neurologist confirming our fears: It was early-onset Parkinson’s disease. Although I had a feeling that I knew what his diagnosis would be, it hit me like a boulder to hear the words spoken aloud.

Supporting the family through early changes

In addition to being Arman’s wife, I was also a young mother. We had three young children, so I wasn’t afraid of my future as a caregiver to Arman. But I was scared about the unknown journey ahead, and how to support my husband and family through it. I also knew we would deal with whatever curveballs came our way, and do it together as a strong team.

In the early years, we dealt with the challenges of the early stages of Parkinson’s, but they were very manageable, as the disease was just starting to show us tiny glimpses of how it would affect our future. Some of those challenges included medication adjustments and side effects of the medication, such as severe dyskinesias of his right leg.

We also dealt with career adjustments and supporting our young children into their new normal with a parent with a chronic illness.

At this time, emotional support from friends and family was crucial, while hands-on care was less demanding. This was the perfect time for me to proactively educate myself about all things Parkinson’s disease, learning how to prepare our family to provide the best support possible.

Becoming an informed advocate

Caring for a loved one with Parkinson’s disease can be difficult, especially as the condition progresses. Effective caregiving starts with a solid foundation of knowledge.

With an abundance of information out there, it can be hard to find credible and reliable sources. I discovered that our movement disorder specialist was the best resource for both Arman and me, and that still holds true for us 15 years later.

Adapting alongside disease progression

As time passed, Arman slowly but surely progressed into the next phase of Parkinson’s disease. He was growing slower and stiffer daily, and the need for larger doses of oral medication was increasing.

While I preferred that he take his doctor’s advice and move forward with other treatment options, I supported his decision not to do so. If this made him comfortable, then I was also comfortable with it. He is the patient, and as his caregiver and wife, my job is to support him even when we disagree.

Partnering on big decisions

After several more years of navigating progressing symptoms and medication adjustments, it was time to revisit earlier conversations with his care team. The dyskinesias in his right leg were worsening by the day, and we were both concerned about his increased risk for falls due to the constant motion.

We talked a lot about keeping him safe and maintaining his independence, and decided to get more information about deep brain stimulation (DBS). We made a list of pros and cons, and together weighed the risks against the potential rewards. By this time, our children were old enough to participate in our decision-making, so we discussed it as a family.

Ultimately, it was up to Arman to take the lead on making the final decision that would be best for him and our family. We met with the neurosurgeon, and soon agreed that DBS was the best option for Arman and his future with Parkinson’s disease.

Helping through the turning point

During particularly stressful times in our lives, such as navigating medication adjustments or therapeutic procedures, I remind Arman of a line from one of our favorite movies, “The Shawshank Redemption.”

The quote, “Get busy living, or get busy dying,” is spoken by the character Andy Dufresne, played by Tim Robbins. Our personal interpretation of this quote is to choose happiness, maintain hope, and live life to the fullest.

Acting as his backup

A new symptom that has more recently emerged is the addition of speech issues. This one has been particularly challenging for Arman, specifically in large crowds or with people unfamiliar with Parkinson’s.

When he struggles with communication, I try to step in and help only when needed and asked. I allow him the opportunity to do it himself, but I am here as his backup voice if he is having difficulty. I want him to feel in control of his life as much as possible, considering he has lost so much of his independence.

Balancing safety with autonomy

During the past few years, we have focused a lot of attention on fall prevention, as retropulsion and balance issues have become probably the most difficult (and dangerous) symptoms of Parkinson’s disease so far.

This has been extra tricky because, as Arman’s caregiver, I feel a constant need to hold his arm or hand whenever we are walking, or even standing in place. I am so consumed with the fear of him falling that I have struggled to allow him his independence, mainly when we are out of the safety of our home.

I am constantly working on stepping back and giving him the freedom he desperately deserves. As a caregiver, I try to give myself some grace because I am not perfect; however, my intentions are.

Reflecting on the journey

In looking back on my years of experience as a caregiver, I am grateful to have had the opportunity to stand by my husband’s side as he has moved through the different stages of Parkinson’s disease. During this time, I have learned the importance of maintaining an open and honest relationship with strong communication at the forefront.

We have been fortunate that our uninvited guest, Parkinson’s, has only brought us and our family closer and stronger. It’s like this crazy bond that only we can understand.

Our family enjoys our lives, just like any other family, and we don’t allow this diagnosis to take the joy out of life. We look for the good, or the bright side, of all that comes our way because happiness and laughter are choices we continue to make every day.

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