The new year is a perfect time to reflect on unexpected gifts
For several days in December, I felt a bit like my old self
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The end of the holiday season and the beginning of a new year are always a time for reflection. As the first month of the year rushes past us, I wanted to pause and highlight some unexpected gifts from this holiday season.
I’m fortunate to have wonderful friends and family who have seen me through the ups and downs of the past 12 years, following my Parkinson’s disease diagnosis. This support has been crucial during both the good and bad times. My loved ones hold up a mirror to remind me how far I’ve come.
Twelve years is a long time, and I often forget how I’ve felt or acted at various points along the journey. I experience life with Parkinson’s disease every day, so the details tend to blur. For those outside my household, it can be easier to see and remember things because they aren’t part of my day-to-day routine.
Taking stock of the blessings
Over the holidays, I had several conversations with friends and family about how I felt, and how my symptoms are now compared with the past. In particular, three discussions focused on how difficult it was to see me so controlled by symptoms and medication side effects in the weeks and months leading up to my deep brain stimulation (DBS) surgery.
I had put aside this period of manic racing of my mind and speech due to the side effects of one of my medications. I was speaking a mile a minute and unable to sleep, but without the medication, I was stuck, unable to move or get around, like a statue of myself. For me, all of this went away after my DBS surgery. The surgery was a tremendous gift, and it was good to be reminded of that.
DBS is not a cure, but I genuinely believe that without it, I would be permanently disabled and wheelchair-bound at this point. Instead, I’m still working, mobile, and able to enjoy life. Not only am I feeling better, but having friends and relatives, particularly my dad, visit in early December and see how well I’m doing was another tremendous gift.
Another blessing was the energy I had. For several days in December, I felt a bit like my old self again. I was baking, cooking, and going out with friends. The idea of being able to stand long enough to mix and bake a batch of cookies was something I had given up on. But in the six months since my adaptive DBS (aDBS) was turned on, I’ve had more consistent energy, allowing me to do more physical activity. aDBS enables a system to sense the need for more or less stimulation and adjust in real time. What a gift to the world of Parkinson’s!
I do still get tired and need rest. (I love a good nap!) The fact that I was off work for nearly two weeks helped with my focus and exhaustion. It was such a gift to have even a few days when I could look around and say, “Look at what I got done!” Bad days sure make you appreciate the good ones.
The last gift is all of you. I’m not very good at replying to comments here, but I do read all of them. To those of you who have found comfort in reading a story that sounds like your own, or who have felt a connection with my experience, thank you. I’ve often said that if someone had tried to explain to me what life with Parkinson’s disease is like before I had it, I never would’ve understood. Even now, after living with it for well over a decade, I’m not sure my explanations do it justice. But knowing this community is here, and that my words can reach someone, is a tremendous reward.
I hope everyone receives similar gifts in their own lives, and I look forward to sharing more of mine with you.
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.
Michael T True
Thanks to the who had DBS and told his story about how it helped. I was diagnosed with Parkinson in 2016 and I can say it has been a living hell ever since. The shaking is enough to drive a person crazy and then to have your family not understand what you are going through. I have fallen many times. I'm just lucky I haven't broken any bones yet, just alot of scrapes and bruises. My family looks at me as if I can still do all the things I use to. Like trail walking in the Smokey Mountains. They get mad at me. I try to explain how this disease effects my walking and talking. But it's still my fault that I can't have the life I use to have. I have been active all my life. 28 years U S Army, and then 21 years Deputy Sheriff. I found out the Parkinson is caused by Agent Orange from My time in Vietnam. My doctor has Me on 12 mg of foscarbidopa and 240 mg of Foslevdop administer be a pump. It's okay, but it doesn't work all that good. I'm considering having the DBS done. Your story has helped in my decision greatly. I just want some bit of normalcy back in my life.