My husband’s Parkinson’s diagnosis prompts ever-evolving feelings

If you’re reading this column, there’s a good chance you have some connection to Parkinson’s disease. I say this because I don’t often receive comments from readers who aren’t touched by Parkinson’s in some way.

Now that we know why you might be reading this, I have some questions. How did the diagnosis make you feel, and how did you handle those feelings? Did it take a long time to work through your emotions, or are you still dealing with them today? What type of support helped you navigate the emotional side of the diagnosis, and has it been beneficial?

There are millions of ways to feel after a diagnosis of any kind. Whether you’re the patient, spouse, child, parent, friend, or family member, you are entitled to your own feelings about the diagnosis and the future. The interesting thing about feelings is that they often change and evolve over time.

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How I reacted to my husband’s diagnosis

After my husband, Arman, was diagnosed at 38 with early-onset Parkinson’s disease in 2009, I felt numb for the first few years. I went about my daily life almost pretending that Parkinson’s wasn’t even there. I hoped that if I ignored the disease, it might ignore us right back and simply disappear. Unfortunately, that is not how a neurodegenerative disease with no known cure works. Parkinson’s behaves like an uninvited houseguest who simply won’t leave.

In addition to my unorthodox coping strategy of ignoring the inevitable, there were many days when I questioned the diagnosis, hoping and praying that the doctors were wrong. It took me years to finally accept that they were correct. Even today, almost 15 years in, I often ponder the reality of Arman’s diagnosis.

Although it’s been a decade and a half, I’m still dealing with many complicated feelings today. I often feel angry, sad, scared, overwhelmed, and worried. I also feel anxious about the unknowns in our future. Each and every feeling is valid and important.

Learning to cope with all the feelings

I handle my emotions by working hard to be brave and strong, even on my weakest days. I won’t allow this diagnosis to win. I remain optimistic and upbeat, and I smile and laugh through hard times. As I’ve discussed in previous columns, my attitude is my choice, and I determine my response to any situation, including my feelings. I will choose strength over weakness every day.

Even though Arman doesn’t always love to hear it, I often vent my feelings to him. (It’s like free therapy!) At times, it can be complicated because he is so directly involved. But he has always been the easiest person for me to talk to, even now. Being open and honest about your feelings, good or bad, with your spouse, friends, and family members is crucial. You cannot solve anything without an open and honest relationship. Communication is vital, and when that stops, everything falls apart.

No matter what stage of a diagnosis you’re at, feelings will always be present. Some days are easier than others, and you feel on top of the world. Then there are the days when you need to force a smile and hold back the tears just to get through the moment.

Remember that your feelings, whatever they are, are all normal. Our personal response to stress is as unique as we are as individuals.

Dealing with a Parkinson’s diagnosis can be difficult from any perspective, so cut yourself some slack and do what seems to work for you, not anyone else. Find the tools that help you repair yourself daily, and never leave home without your toolbox. On the hard days, remember the good days. On the easy days, take note of what’s working for you. On all the days in between, remember that it takes more muscles to frown than to smile.

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.