Blog
Blog written by: Eric Minghella, emm@ssd-help.org
Parkinson’s disease typically affects older people, but if you haven’t yet reached the age where you want to retire and you’ve been diagnosed with Parkinson’s disease you can apply for Social Security disability benefits. If the symptoms of Parkinson’s are so bad that you can’t work any longer and you expect that you won’t be able to work for at least a year but you have work credits you are eligible for Social Security disability benefits.
Now, the story turns to you. Your travel experience will vary according to what type of traveling you are doing: flying to a single destination to visit family, touring on an itinerary you have planned, embarking on a group tour. And it will depend on your own particular Parkinson’s issues. Your goal is to become aware of common travel challenges and consider how best to prepare for them.
Nearly a year ago I wrote an article that appeared on this blog on the topic of sleep and PD. The basics are still true – the fact that sleep is essential to reset your system, that eight hours is the recommended amount of sleep for all adults, and that disturbances in healthy sleep patterns are one of the most common non-motor symptoms of Parkinson’s disease.
In getting ready for my winter trip to Iceland, where temperatures range from 28-36 degrees Fahrenheit, I paid careful attention to the packing list provided by the tour company running my trip. As instructed, I brought plenty of layers of clothing. I could barely squeeze all layers on at once and I looked like a sausage bulging at the seams when fully suited up. I soon discovered that I couldn’t manage all those layers. Like many others with Parkinson’s, I have limited flexibility in my torso, shoulders, and arms.
In the depths of the dark winter, we bring some light to our world when we celebrate the New Year. A traditional part of that celebration is the New Year’s resolution. Humans have been pledging to change their bad habits since the Babylonians vowed to pay off debts and return borrowed farm equipment some 4,000 years ago. (The custom of breaking those resolutions within several months is also an old one.) How can people living with Parkinson's disease make the most of New Year’s resolutions?
In thinking about a blog post this month I cannot help but think of Thanksgiving. It is so easy to think about the negatives of a Parkinson’s diagnosis for the person with PD and for their surrounding circle of family and friends. I want to stop and consider is there anything about a PD diagnosis that perhaps one can be thankful for or appreciate?
One of the most common non-motor symptom of Parkinson’s disease – affecting an estimated 90% of PWPs – is a reduction in (or complete absence of) a sense of smell. The reduction is called “hyposmia” and the absence is “anosmia.” Often this symptom predates many others. This loss has the potential to significantly affect our quality of life. The inability to accurately detect odors in one’s environment can be inconvenient (if you can’t tell whether your clothes or your body parts need cleaning and deodorizing) or even dangerous (if you cannot smell a fire or a gas leak.) But a related loss that may perhaps have even more of an impact on one’s quality of life is a reduction in the sense of taste.
My Ddd was diagnosed with PD in 2019. As a family, we experienced many changes, especially him. One of the changes that surprised me the most was his taste in food changed. For example, my dad used to LOVE beer. We are from Cincinnati, so of course he loved beer. Since being diagnosed, the taste of beer has become chalky to him. Also some food now has no taste. Weirdly enough…some food tastes better to him now. Peaches and apples taste sweeter now.
How many of you wrote in a diary growing up? Journaling is very similar to keeping a diary but there are so many different types of journaling to explore! There are many benefits to journaling. It helps reduce stress, keeps your memory engaged, boosts your mood and strengthens your emotional functions (source).
Support groups are a safe space where individuals can come together to share their stories and experiences with others. Support groups are focused around a common concern; in this case Parkinson's Disease. Support group content is driven by the folks who are attending the group with the assistance of a group facilitator.
I've been avidly reading Louise Penny books- her Inspector Gamache Series. They are beautifully written with rich character voices that struggle with the big questions in life. Yesterday I came upon this and thought about my life and how that way of holding on to the good things could help me: “What do you love Isabelle?”
When you are diagnosed with chronic disease like Parkinson’s, no one promises that because you have Parkinson’s, you will not also experience other illnesses or tragedies, accidents or losses. It is just the way things are. But sometimes it makes me want to jump up and holler, “Wait a minute! Isn’t Parkinson’s enough?!”
