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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Having Fun, Keeping Fit with Parkinson's Disease - at all ages

Terri Reinhart

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With thanks to Caring.com for this article!

For the younger folk, here's some suggestions from Studio Foxhoven.

In our Never Give Up - Parkinson's and Dystonia support group, the members age range goes from 6 years old to 80-something. Because I'm used to seeing so many different ages in a group of people with Parkinson's and Dystonia, and because I want to encourage everyone to understand that Parkinson's is not just an "old person's disease", I felt it important to add some suggestions for activities for the younger folk. 

Being handed a diagnosis such as Parkinson's before age 50 - or before 20 - means having to do an attitude adjustment. Our lives have changed. We can still do lots of things, but we might just have to make some adjustments. Knowing that we'll need to plan for some extra rest time on a road trip will make it go much more smoothly and we'll have a lot more fun. 

The most important thing to remember is, no matter what our abilities, we can still find lots of ways to have fun and be a part of the world. Ready? Let's go!

1. Play catch or just play

Whatever we'd like this to be, play is breathing out, letting go of stress, losing track of time because we're in the "zone". 

There is a real benefit to playing catch, which is explained well, just to the left. We used to play catch in our Parkinson's Yoga class a lot. Our teachers brought in a bunch of soft plastic squeeze toys and... we threw them at each other. Technically, we were supposed to call out the other person's name, then throw to them.

Sometimes, more than one person would call my name as they were throwing and I'd end up trying to reach for three at once. The best part was we'd all be laughing!

If you're wanting to really take on a challenge, try juggling. Okay, at least one person is going to say, "WHAT? I have Parkinson's, I can't juggle!" I say... take a gander at this! Juggling

Can you imagine juggling while on a balance beam? In a way, we're all learning how to juggle. Sometimes, just putting the dishes away can feel like juggling.

2. Sing or Speak to strengthen the voice and brain

Singing in the shower, singing in the car, singing while cleaning house - singing is just simply good. 

In every exercise class for Parkinson's, we're given various mouth movements and facial movements to practice. I used to do these in the car, but I got some very odd looks from other drivers.

Another way to exercise our speech and all the muscles required for it AND exercise your brain at the same time is to learn a language. You don't have to become fluent, you just have to have fun. The best way I've found to do this is through the Say Something In programs. They are really amazing and fun. And what better way to exercise those muscles than to learn Spanish or Welsh? Just think how delightful it will be to greet someone in their own language!

3. Exercise - whatever way you will

It comes up now and then - what is the best exercise for Parkinson's disease? The answer to that is simple. It's the one you will do, the one you enjoy.

Walking, unfortunately, is not the one for me. My dystonia makes it exhausting and, when it really kicks in, unsafe. A car horn honking could startle me to where I could fall - though falling isn't really the right word. It's more like being propelled - down, backwards, sideways - my body likes to keep others entertained.

I have friends who ride bicycles, swim, walk with poles, pole dancing, do Tai Chi, yoga, climb mountains, and on and on, all with their challenge of Parkinson's. 

I dance. Specifically, I square dance. Our group (The Rocky Mt Rainbeaus) is the best group in the country (of course) and we always have fun. You can't think of personal problems or try to solve the problems of the world when square dancing. You have to listen and be ready to move - fast. It's sort of like being a human kaleidoscope. 

When I started dancing, I would get dizzy very easily. Now I can do the spins and twirls and rarely get dizzy at all! I started learning how to dance the lead part this year. Going back and forth between lead and being follow, my brain will work very hard.

4. Play games - extra points for playing with grandchildren

I like Sudoku and cryptograms and word jumbles. I like Scrabble. I like playing chess with my grandson even though the rules are changing, and whether or not my piece is captured depends on what direction his piece is facing. It's just possible, in his game, to sneak around an opponents knight, if it's not looking.

As for short term memory practice, grandchildren do not forget. They especially don't forget when you've promised to take them to the park or play chess with them "right after I rest my eyes for a few minutes". Of course, depending on the age of the children, one might not want to rest their eyes until after the grandchildren have gone back home. They challenge us to keep our brains in tip top shape.

Coloring is also a great activity. The new adult coloring books are lovely and appropriate for most ages. It's meditative and reduces stress. And, if your life is way too stressful at the moment, there are adults only coloring books with beautiful swear words to color. 

Here we are playing chess with our grandsons.

5. Try Complementary medicine

I won't speak to Reiki, as it is covered in the article from caring.com, but I will say, I've had Reiki treatments and have come to appreciate the gentle healing energy I've received from this. There are other complementary treatments that can help. It's a matter of finding out what works for us.

Sometimes, we can get so much advice regarding alternative treatments, it can be overwhelming and expensive. We also need to be careful, especially with herbal remedies and supplements. It's important to talk with our doctors and pharmacists before adding these to our regimen. 

If any therapy or product claims to cure Parkinson's, be very suspicious. It might do you some good, but it probably won't cure you.

A healthy diet can be one of the best ways to complement your treatments. This is easier said than done, but well worth the effort.

6. Stay involved

When we're diagnosed at a young age, or even a youngish age, staying active and involved with the world is a big priority. For many people, keeping their job is not just a simple want, especially when one has a family to support. Disability payments are not enough to make up for a full time salary. That said, if we have to give up full time employment, it doesn't mean we can't be active. 

Participating in clinical studies is a way of giving back to the community and taking us closer to a cure and better treatments. For the past several years, I've been one of 4 women speaking on a panel to PharmD students at the Skagg's School of Pharmacy. It helps them to have a human connection as opposed to just the book learning. 

See your family. See your friends. Give. Be a listener. Know that everyone we meet is coping with their own challenges on their own path. Parkinson's just has a recognizable name. Just because someone looks able bodied doesn't mean their life is any easier than yours. Go easy on other people. Go easy on yourself.

Be grateful. See the silver linings. Have fun!

6 Fun Activities to Help Seniors with Parkinson's Stay Healthy

About one million Americans live with Parkinson’s disease, a condition that affects the brain’s nerve cells and affects movement and coordination. There is no cure for Parkinson’s, but treatment can slow its progression and reduce symptoms like tremors, stiffness and balance problems.

Both early on and as the condition progresses, it’s important for the person with Parkinson’s to continue doing things that he or she can and take time to be with family and friends.

“We have found that Parkinson’s can be an isolating disease and people’s worlds get smaller as their functional ability changes,” said Amy Lemen, research assistant professor of neurology and medicine at the NYU School of Medicine. “We encourage people at all stages of Parkinson’s to exercise and take part in social activities.”

The following are six fun activities to help your loved one with Parkinson’s stay physically and mentally healthy.

1. Play catch to benefit the brain

You may not think playing catch can slow the progression of Parkinson’s, but Jackie Russell, co-founder of OhioHealth Delay the Disease, a wellness program for people with Parkinson's, said a growing amount of research shows it may.

The idea behind this is that a game of catch can improve neuroplasticity, since working the brain in new ways forms healthy nerves and connections. This helps make up for areas of the brain that are injured or diseased.

Your loved one will get the biggest benefit from this exercise by simultaneously moving and thinking, Russell said. Increasing their heart rate primes the brain to learn, so they should work on tasks that have become difficult.

For instance, if memory is an issue, each time they catch the ball, your loved one can try naming a month or a color before throwing it back to their partner. If movement is an issue, ask them to try to lift off only their thumb or pinky finger after catching, before throwing the ball back.

2. Sing a song to strengthen the voice

Parkinson’s disease can affect any muscle in the body, including those related to speech. Over time, the person’s voice can become softer, slowly reducing his or her volume.

One way to help remedy this is by singing, which helps strengthen the voice’s quality, clarity and reduce vocal tremors. Lemen says someone with Parkinson's will get the best results if he or she treats singing like exercise – aiming to sing daily, or for at least an hour three to four times a week. Singing loudly will help them retain volume.

The best part is that this “exercise” doesn’t have to be work. Encourage your loved one to join a choir or sing karaoke -- these activities not only help their voice but get them out of the house and socializing with others who also love music.

3. Take a walk to exercise motor abilities

You've likely heard it before -- walking is one of the best ways to get exercise. But instead of hopping on a treadmill, help your loved one turn walks into social activities. You can help them sneak in walking by, say, hiking together, antiquing or going to museums or garage sales.

Since falls are common among people with Parkinson’s, you'll want to make sure your loved one isn't pushing too hard. Rajesh Pahwa, director of the Parkinson’s Disease and Movement Disorder Center at the University of Kansas Medical Center, said you can’t predict a fall. To help your older adult avoid falls, remind them to not multitask – try not to talk a lot or carry something while walking.

Older people with Parkinson’s can also get in walking by incorporating it into daily routines. For instance, if they ride the bus or take the subway, see if they can get off one stop before their usual stop and walk the rest of the way. Park farther out when you go to the store with them or make it a rule to take stairs instead of elevators or escalators when you’re out together.

“There is evidence that exercise really does help Parkinson’s in a variety of ways including improving motor and nonmotor symptoms” Lemen said. “And it helps adapt to living with the disease over time.”

4. Play games for better short-term memory

If you and the person you are caring for like to play games, it can be fun and therapeutic. Just remember a couple of notes to make sure these activities are both enjoyable and challenging.

Nearly any game that requires some thought is good for cognition – puzzles, chess, Sudoku, computer games are all great examples. But Russell recommends switching things up now and again. Once you become really good at something and it’s not a challenge, it doesn’t necessarily offer as many cognitive benefits.

“You need something that makes you think in new ways because that’s part of the magic; that’s what helps you think more clearly and improve short-term memory,” she said.

That said, in advanced stages of the disease, Pahwa notes that it’s good to do things that aren’t too complex. The games need to be at a level your older adult can manage. “As you are progressing, you may need to go to simpler puzzles and things so you are not making it too difficult,” he said. “It’s important to keep doing this stuff but not push to the point of frustration because you won’t keep doing it.”

5. Try Reiki for positive healing

Though there is little research showing that integrative, or “natural” treatments can help diminish Parkinson’s symptoms, Lemen said she has plenty of anecdotal evidence that bears this out.

The important thing is to have as many tools in your caregiving toolbox as possible which may include things like meditation, acupuncture or massage. One she sees many patients use is Reiki.

Reiki is a type of Eastern complementary medicine based on the concept that energy can support the body’s own healing abilities. During the treatment, a practitioner will place his hands on or just above you to create positive, healing energy in particular areas of the body. It is often used to help reduce pain, anxiety and depression.

Lemen said she has heard from patients that it can help manage the mental health issues that can come with Parkinson’s for both patients and caregivers.

6. Help your loved one get involved with their community

If your loved one was diagnosed with Parkinson’s right around the age of retirement, volunteering could be a great option for them to help prevent isolation and loneliness.

If you or your loved one already has a favorite charity, you can ask if they need help. If you're not sure where to start, local senior centers can get you plugged in where there are needs in the community. These organizations can help find ways for your loved one to contribute, even if their mobility is becoming limited.

Lemen also recommends getting involved in the Parkinson’s community. There is a tremendous need, she said, for patients and caregivers to be involved in research or to educate others about Parkinson’s. You can find out more information by contacting your local physicians or the Parkinson’s Disease Foundation.

“Parkinson's can be about loss, but we want to help people regain a sense of what is possible,” Lemen said. “I have seen thousands of people really adapt and learn they can live well with Parkinson’s disease and build a good life.”

A healthy social life is found only when, in the mirror of each soul, the whole community finds its reflection, and when, in the whole community, the virtue of each one is living.
— Rudolf Steinher
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