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Taking the Day Off from Parkinson’s

day off

I had a pretty good day recently. It was better than I’d had in a long while. I remember thinking that I could forget I had Parkinson’s disease if every day was like that day.

But every day isn’t like that one. Every other day usually begins with being slow and rigid. If I didn’t have Parkinson’s disease, I would jump out of bed and skip to the bathroom. It would be the beginning of a new day.

If I was taking the day off from having Parkinson’s disease, I would take my morning medicinal cocktail and not feel nauseous at all. But wait — if I didn’t have Parkinson’s, I wouldn’t need a medicinal cocktail.

My shower time would be halved, and I wouldn’t have to worry about being off balance in the shower or falling when stepping out of it. 

I would sit down at my computer, and instead of my fingers seizing up, feeling like popsicle sticks, and refusing to be obedient to my brain, they would begin to type. One word, two words, three words, four — just like the old times. 

What if?

But if it were like “old times,” I would most likely still be working. I would be sitting at my desk taking phone calls, encouraging people, and leading a children’s choir. Or I would be running my business again, making wooden figurines for Christmas, Thanksgiving, and Easter scenes. 

Perhaps I would have retired by now and would be watching my grandkids full-time instead of a few hours, two days a week. And I wouldn’t need a nap (or two) during the day.

If I had escaped the Parkinson’s monster, I would be able to drive myself wherever I wanted to go. I would be able to do laundry anytime and not just when I’m “on.” I could fold clothes and carry out other household chores without any help.

If I didn’t have Parkinson’s disease, I wouldn’t have to deal with my medications being “off” or “on.” I could float through my day. 

Life would be good.

Don’t misunderstand me

My life is good in spite of Parkinson’s disease. I have so much to be thankful for that I once may have taken for granted. Family and friends are so much more precious and valuable to me now.

Daily doses of dopamine may be the norm now, or adjusting deep brain stimulation settings, but I still get those priceless hours with my grandkids, and the medication still works when I take it. So, even if I can’t really take the day off from having Parkinson’s, some days are better than others, and I’ll take what I can get.

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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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Taking the Day Off from Parkinson’s appeared first on Parkinson’s News Today.

In Addition to a Cure for Parkinson’s, What Else Do We Really Want?

things

We all want something in life. We want to win the lottery or find our perfect mate. For those of us with a chronic illness, we’d be more than satisfied with a cure for our disease. 

Until we find a cure for Parkinsons’s disease, I’ve compiled a list of things that might help people with the disease to live with greater ease:

1. Some Parkinson’s patients would do anything to regain their sense of smell. It is a brighter day when we get a whiff of a rose’s fragrance or the aroma of garlic bread.

2. We want to feel good. I’m not merely referring to the absence of nausea, although that comes into play with all of the medications that can make us feel sick. We also want to feel positive about ourselves despite this disease taking so much from us.

3. We often feel that we have nothing left to offer, and we would like someone to remind us that we still have a purpose despite Parkinson’s.

4. I’ve heard of people with Parkinson’s whose family members or friends believed they were pretending to have the disease. Here’s what I say to them: “Don’t you think we have better things to do with our time than pretend to have an incurable disease?”

5. We want others to understand that although some of our symptoms can be hard to see, the disease is real. Our tremors, pain, lack of balance, and risk of falls are genuine.

6. Parkinson’s disease can be summed up as a loss of dopamine in the brain.

7. Our constant companion is this little monster, but we would like a reprieve from frequent shaking.

8. It would be fantastic if others were aware of the struggles and invisible symptoms that we live with so that they can fully understand the urgency of a cure.

9. It is common for people with Parkinson’s to experience sleepiness as a symptom and as a medication side effect. As a result, we can spend a good deal of our day sleeping. We also struggle to get a good night’s sleep. It can be a vicious cycle. We would love a treatment that doesn’t knock us out for half of the day but instead knocks out Parkinson’s.

10. Besides having a little plastic bat to bonk others over the head when they make thoughtless comments such as, “You don’t look like you have Parkinson’s disease,” a cure would also be welcome!

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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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post In Addition to a Cure for Parkinson’s, What Else Do We Really Want? appeared first on Parkinson’s News Today.

Are You the Light in Someone’s Darkness?

Traveling through Parkinson's

I attend my boxing class twice a week. Regardless of whether she is having a good or not-so-good day, Kathy, another woman in my class, will be smiling. Not only will she be smiling, but she will be giving away words of encouragement. I often hear her thanking one of the coaches or the occasional volunteers for something they have done — not for her, necessarily, but for the entire class, like showing up for us.

It’s not that the rest of us aren’t thankful or don’t appreciate what is done for us, but Kathy goes a step further and thanks them — every time. She is illuminating the journey to being found.

What do I mean by that?

Panorama: The Journal of Intelligent Travel introduced its fifth issue, titled “Lost,” by saying, “The word lost originates from the Old English losian, meaning to perish. While this collection features many narratives of loss, it also illuminates the journey to being found.”

Having Parkinson’s disease can feel like being lost. It can sometimes feel as if you are all alone, wandering by yourself on a journey of endless twists and turns, unable to see what is coming around the next bend. You feel like you are slowly fading from who you once were into someone you no longer recognize.

You may have once been calm, while now you are anxious. At one time, you may have been a great orator, whereas now you fret over holding a simple conversation with a friend. You may have won medals for being the fastest runner on your college track team, but now you don’t dare go anywhere without your cane to stabilize you.

It’s hard to come to terms with something like Parkinson’s disease, and it’s easy to feel lost and misplaced. To feel like you’re living someone else’s life and not the one you thought you’d be living. It’s hard to go around greeting people cheerfully while you’re dealing with a disease you’d rather not have. 

Let’s just say it, shall we? Let’s just be honest. Sometimes, we don’t just feel lost, we feel as if we are perishing faster than we’d hoped and in a manner we never dreamed of. But there were people who found us slumped over alongside the path we have found ourselves on with this disease. They sat down beside us, told us they’ve “been there, too,” and helped us get back up. They brought light to our dark world and showed us we can smile and be thankful once again.

Is there someone who is a light in your life? Someone who illuminated your path while you felt lost and alone? Pay it forward. Be a Kathy, a light in their darkness.

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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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Are You the Light in Someone’s Darkness? appeared first on Parkinson’s News Today.