Mary Beth Skylis

The last time I saw my Dad, his feet were swollen. I quickly became worried that we were encountering a new Parkinson’s symptom. And I asked him if he knew why it was happening. He told me that he thinks it may relate to his diet. Perhaps he’s eating too much sugar or salt. Have any of you had swollen feet? If so, how do you manage them?

I’ve seen all kinds of different devices that claim to help with Parkinson’s symptoms. There’s a spoon that helps minimize tremors. There’s a cup that prevents spills and sloshing. I haven’t, yet, invested in any of these items for my Dad. But I’m curious if any of you have tried devices that help mitigate Parkinson’s symptoms? If so, were they…[Read more]

I was several years into my journey with my Dad before I found Parkinsons News Today. The website always catalogues helpful information from both patients and clinicians. And the forums allow us to erupt in conversation when the desire arises. How did you find these Parkinson’s forums? Have they been helpful for you?

As Parkinson’s progresses, it can become really important to have a support team to keep you healthy. Many caregivers help to make meals or fasten buttons. And for many patients, that caregiver is a family member. But it’s also possible to get outside help. Is your caregiver a family member? A stranger? Or something else entirely?

Parkinson’s is infamous for being difficult to diagnose. Since the symptoms vary so widely, it can be difficult to determine just what it is. And I’ve heard that the wide variety of symptoms can contribute to a misdiagnosis. Have you experienced a misdiagnosis? If so, how did you determine that it was the wrong diagnosis?

Finding a doctor that supports your health but who also honors your desires can be challenging. And it can take a long time to find a support team that meets all of your needs. Have you been lucky enough to find a clinician that you love? If so, what was your journey like? Did it take time to find them?

I’m a columnist for Parkinson’s News Today, and I’m always looking for ways to expand our reach and our story-telling abilities. And I was wondering if any of you might be interested in telling me your stories? We could talk about the topics of your choosing. Let me know if you’re interested!

It can be difficult to find the right sources for anyone who’s struggle with Parkinson’s disease. But I’ve heard that it’s even harder to find resources for those who have early onset Parkinson’s. Do you know of any resources that target early onset Parkinson’s? Do you have favorite informational sources? Is there anywhere you go for inspiration?

As Parkinson’s progresses, it can become impossible to perform important tasks like dressing and making meals. I’ve heard before that there are organizations that offer guidance and help when you reach this phase. Have you successfully found external care? Is this something that you’ve been interested in exploring before? Where might we look to…[Read more]

I’ve noticed that my Dad seems to be freezing more frequently. We’ve arranged our furniture to support him while he moves across the main floor. But I still worry about him falling. He spends much of his time alone, and I can’t bear the thought of him falling while no one is around. Are you worried about falling? Have you taken any steps to…[Read more]

I’ve been evaluating my relationship with food lately. While it’s extremely complex and tough to navigate, I do have a theory that some foods are more likely to support a healthy mood than others. Does food impact your mood? Have you noticed shifts in your attitude depending on what you choose to consume?

My Dad jokes that he takes a cocktail of medications to keep Parkinson’s at bay. And while they certainly serve a purpose, some of them come with unwanted consequences. Have you experienced odd side effects from medication? If so, which ones worried you the most? And did you choose to stop taking that medication?

Being diagnosed with Parkinson’s disease often happens in a flurry. It’s fairly easy to get lost in the emotions and information that’s being thrown at you. As we learn about the disease, we may discover helpful tips and tricks that can provide a better sense of well-being. What do you wish you’d learned earlier? Is there anything you’d do differently?

My Dad commonly tells me that he’d like to head south, where the temperatures are a little bit easier to tolerate. He finds that living in the cold is a bit harder on his joints. Because of this, he seems to enjoy the Spring and the Fall the most. In Michigan, those months offer mild temperatures that are just warm enough to support joint health.…[Read more]

It’s easy to dwell on the constant loss that Parkinson’s provides. But I’m often really proud of my Dad when I see him coming up with new ways to accomplish tasks. He’s fighting to maintain his independence in every way possible, and I think that’s reason to celebrate! What are you proud of having accomplished? Are there moments that you’ve…[Read more]

Parkinson’s disease is like a shadow that follows you around. While relationships and support ebb and flow, the disease seems to stay the same. I’ve wondered how we might build more consistent support systems. How is your support system right now? Do you have a stable community of people? Have you been able to get back out into the world or…[Read more]

The last time I was home, I noticed that my Dad was struggling to swallow his chicken soup. On more than one occasion, he got the fluid down the wrong pipe which caused discomfort and coughing. Seeing this happen made me wonder if others struggle with this symptom frequently? And if so, how do you try to fight it?

I recently learned that using the term “Parkie,” to describe someone with Parkinson’s disease may be offensive to some readers. Although, in most cases, it doesn’t appear to be an intentionally harmful term, it does appear to cause pain for some people. I want to continue my search to find ways to communicate about Parkinson’s in a sensitive…[Read more]

My Dad’s speech has gotten slower and more strained. He still does a beautiful job of communicating when he wants to, but I worry that he doesn’t always participate in conversations because it’s getting harder for him to talk. He hasn’t tried speech therapy, and I’m not sure how to convince him to try. Have you explored speech therapy? If so,…[Read more]