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Parkinson’s Disease and the Uninvited Guest

parenting

When Parkinson’s entered my life, it brought an uninvited guest along with it: Parkinson’s me.

Parkinson’s me follows me everywhere and is part of everything I do. Most of the time, she quietly stays in the background. Other times, she is overwhelming, to the point where putting on my brave face becomes exhausting. Until recently, I didn’t always like Parkinson’s me, but I’m trying to understand her instead of simply being afraid of her.

Parents with early onset Parkinson’s are in the busiest times of their lives. Any situation can become stressful and trigger symptoms. Despite my best efforts, Parkinson’s me tends to arrive front and center. It’s not uncommon for her to have a completely irrational response to things. Indeed, anxiety and Parkinson’s are good friends often seen together. Their relationship manifests as a nonmotor symptom that, when overlooked, can be debilitating, frustrating, and embarrassing.

I feel helpless when Parkinson’s affects my ability to parent my child. Parkinson’s me always seems to arrive when my kid needs me — at tryouts, auditions, school functions, and other crowded events. For example, Parkinson’s me accompanied my son to a crowded audition, complete with tremors and a feeling of panic. My son put his hands on my shoulders and said, “Mom, I’ve got this. You can go.”

I was embarrassed and felt horrible for leaving, but he was right to send Parkinson’s me on her way. Rather than being embarrassed by what I could not do as a parent, I should have been proud of my son’s confidence and his ability to handle this situation and many others.

If we’re open about Parkinson’s and willing to talk to them about our diagnosis, kids are incredibly perceptive and resilient. In my opinion, we should help them understand Parkinson’s so they are not afraid of it.

Ultimately, we are still their parents. We just happen to have Parkinson’s.

If you find yourself embarrassed by your disease as a parent, stop and ask yourself the following questions: Did you get the job done? Was your kid strong and confident? The answers will be “yes” because you are a parent. Your kid knows that you don’t quit.

You may stumble and fall, but you will always get up. They are confident that you will be there for them, which is a direct result of your efforts, despite the challenges that come with Parkinson’s.

It is not easy to admit, but Parkinson’s me actually can get the job done. The job is just done differently, and that’s OK.

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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 Parkinson’s Disease and the Uninvited Guest appeared first on Parkinson’s News Today.

Empower Yourself by Making Good Choices

exergaming

Medication is more than the regimen of pills we take every day. Exercise, diet, and music are lifestyle choices that are beneficial to people with Parkinson’s disease (PD). We did not choose to have Parkinson’s, but we do have a choice about how we live with and respond to PD.

Making good choices and living well with Parkinson’s is empowering. You are in charge. There can be a day when the couch and ice cream for breakfast are the specials of the day — they just can’t be specials for the entire week.

One frequently asked question is, “What is the best type of exercise?” While research regularly highlights different benefits of different types of exercise, the answer is simple: The best type of exercise for you is one that you love to do and look forward to every day. Try different things. I do a variety of exercises, from coaching Rock Steady Boxing classes to attending ballroom dance lessons with my husband.

Exercising with people who also have PD is an added bonus. Shared diagnoses facilitate camaraderie that becomes an extended family. You show up for class because your brothers and sisters are waiting for you. Everyone may be at different stages in their Parkinson’s journey, but we all share the same hope.

Exercising together provides a support group that meets two or three days a week, rather than once a month. It may be the only support for someone who otherwise may be alone. By doing things together, the unexpected and uncertain Parkinson’s detour can be a little less frightening.

So, where does music factor into the detour? Music can take you in so many different directions, like playing an instrument, singing like a rock star in your car, or dancing. There is evidence that drumming is beneficial, and you don’t even need an instrument — turn your garbage can over and you are ready to go!

Music encourages movement and is fun, especially when dancing. We all know that when we hear the song “YMCA,” all hands are in the air. Dancing is something you can do with someone who is on the Parkinson’s journey beside you or even by yourself. Dance through your house while doing the daily housework like no one is watching!

Little victories happen each day. If you can’t find one, create one by choosing a little extra medicine that has a good beat, makes you sweat, or gives you vitamins. So, go ahead and put on some good music, exercise, and finish with a smoothie made with all those superfoods (yes, even kale). At the end of the day, you can look back and say, “Today, I was in charge, and I won.”

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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 Empower Yourself by Making Good Choices appeared first on Parkinson’s News Today.

Journaling Your Way to a Productive Doctor’s Appointment

journal

Despite having a good rapport with my movement disorder specialists, a feeling of dread still overtakes me when I have an appointment looming in the next 48 hours. This occurs even when I don’t anticipate the day’s events being different from the last time I sat — and sat and sat — in the waiting room.

As inconvenient as waiting may be, I don’t think it is the physician’s fault. Many doctors are overscheduled with patients and accompanying paperwork. Most make an effort to spend time with each patient, and in doing so, cannot abide by a fixed schedule.

Artificial intelligence will impact healthcare in coming years, but as patients, we can help the process by being prepared when it is our turn. Keeping a journal about how you feel throughout the day can help to sort the puzzle of constantly changing health.

I find this beneficial when starting a new medication or experiencing new symptoms. You also can write down questions, including anything from medication side effects to the latest research or clinical trials. Be concise.

When arriving at your appointment, check in, update your information, and find a quiet place in waiting room No. 1. Eventually, your name will be called. You’ll spend some time in waiting room No. 2, where the assistant will take the form you filled out in waiting room No. 1 and enter the information into a computer. They’ll also take your vital signs.

After a few attempts with the blood pressure machine, the assistant will manually take your blood pressure — yes, you do have blood pressure, it’s just low. Finally, you’ll be on your way down the hall to your final destination, the exam room. The assistant will settle you in and say, “The doctor will be with you shortly.”

The exam room has now become waiting room No. 3, but at least you have made it through the final door.

Choose this time to be productive. Get those questions ready or use the opportunity to challenge your brain. Look around the room. Find 10 things, then shut your eyes and do a memory recall game. With a bit of luck, you will hear the door handle turn as you finish the memory game. Your neurologist has arrived and will greet you with, “So, how are you doing?”

If you have a journal, or at least something you wrote down in the waiting room, you will be better prepared. You can offer a genuine answer to questions, rather than automatically responding with just an “OK.” You can be an advocate for yourself and help solve your personal Parkinson’s puzzle. You know how you feel better than anyone else.

Just remember to bring your journal and be patient. It’s worth the wait.

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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 Journaling Your Way to a Productive Doctor’s Appointment appeared first on Parkinson’s News Today.

Happy Trails While Hiking Your Parkinson’s Mountain

trails

As a person with Parkinson’s, do you think hiking is a viable exercise option? If your answer is a resounding “No!” you are not alone. If someone had told me in the past that I would take up hiking, I would have had a similar response. However, keep an open mind, and you may surprise yourself and those around you. Granted, hiking up Mount Everest is probably not your first choice, but there are other mountains you can climb and trails you can explore.

So, how does someone with the Parkinson’s symptoms of poor balance and a shuffling gait accomplish such a daunting task? The answer is one step at a time using trekking poles. These poles take some time to master, but it’s worth the effort to learn to optimize their benefits. Trekking poles encourage big and coordinated movements. They require the use of both arms, forcing one side of your body to work when it would prefer to be sitting on the sidelines. Your arms and legs work as a team, and each member must participate.

Hiking is not compulsory. As a person with young-onset Parkinson’s, I have many tools in my Parkinson’s toolbox, and I am continually looking for others. My trekking poles are one of my best tools, and I use them often. They are fantastic when I need a little extra help with balance. Besides, they look cool and are relatively affordable. Of course, fancy and expensive poles are available, but they’re not necessary — the only requirement is rubber feet.

A bonus of using trekking poles is they help to improve your posture. You might even become a little taller because rather than leaning forward, you’re standing up straight. With better posture comes improved balance and gait, and, most importantly, confidence. I have also seen others use poles to help with freezing by shifting their weight and using the feet of the poles as targets.

Start small, be smart, and most of all, stay safe. A gentle stroll around your house or along the sidewalk is an excellent way to begin. Once you are comfortable, try a local park or shopping mall. Before you know it, you will be on your way to bigger, better “mountains,’ and a more confident you. Happy trails!

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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 Happy Trails While Hiking Your Parkinson’s Mountain appeared first on Parkinson’s News Today.