Clarity is Not Dumbing it Down

Did you understand me?

The last time I was in the emergency room, I was a little taken aback by how one of the nurses spoke to me and I realized she was interpreting my self-advocacy combined with, what I considered to be a rational fear, as hysteria. The situation was this: I occasionally have dystonic storms. Most of the time I do okay and ride out the storm at home. Sometimes, as the article in the link describes, they get away from me. My rational fear is of medication reactions. I've had a number of times when medications have depressed my breathing and virtually paralyzed me, making it impossible to let someone know I'm in trouble. 

At this emergency visit, I was being pumped full of drugs. I made it clear they needed to monitor my breathing because of past reactions I've had. They assured me they would. A couple of hours later, in the room, I told the nurse again that my breathing needed to be monitored. She smiled and said, as though explaining to a 5 year old, "Don't worry, if you stop breathing, all sorts of bells and whistles go off at my desk." Her body language and tone of voice made me feel as though I was just being silly. I didn't know they really were monitoring me. As far as I could tell, I wasn't hooked up to any monitors and the monitors in the room were not on, but I was afraid to say anything more or ask any more questions. She made it very clear how they saw me as a patient. 

How could I have communicated my concerns in a better way? How could the doctors and nurses have communicated to me more effectively?

Patient engagement

I've been pondering this question for a long time, not just because of this one visit to the emergency department, but because of numerous experiences with medical professionals when I accompany my husband, my parents, or one of my kids to an appointment or the emergency room. One phrase I remember hearing (and using) any number of times is "Why should I go back? I know what they're going to say." How many people put off going to the doctor for this reason? 

Several years ago, I became involved with the wonderful organization called PCORI (Patient Centered Outcomes Research Institute). PCORI channels funding to various entities for clinical studies. The applications for funding for these studies go through a rigorous process, all of which include patient representatives in making the decision. I was one of those patient representatives during one funding cycle. It was a lot of work, especially as all four of the applications I read were chosen to be presented during the in-person review in Washington DC. It meant I had to attempt to speak about each one. It was exhausting and I don't know if I really have the stamina to do this, at least not often, but it was also amazing to be part of the process.

The Alan alda center for communicating science

I was also able to attend the first annual meeting of PCORI in 2015. This was truly an amazing experience. To hear first hand the direction we are going in the field of health care was awe inspiring. I wish I could go every year. I especially wished I could have gone this year because one of their keynote speakers was Alan Alda. Yes, the Alan Alda, aka Hawkeye Pierce from M.A.S.H. His presentation was titled, "Improving How We Talk to the Public about Science and Health". Fortunately, even though I couldn't attend in person, I was able to attend virtually through their webcast. Mr. Alda's talk was shown live and would not be archived, so this meant getting up at 6:00 am to be ready and somewhat awake when it started at 8:30 eastern time. It was worth the effort.

Few of us know about the work Mr. Alda has done in this area. Having had a life long interest in science, he hosted a PBS program called "Scientific American Frontiers". He discovered by asking questions of the scientists, he could help them to explain their work in such a way that he could understand it and become even more excited about it. This, of course, helped the audience to become engaged as well. Taking this idea even further, Mr. Alda, along with others at the Alan Alda Center for Communicating Science at Stony Brook University, have created training programs - workshops, online learning, and private coaching - all designed to help scientists and health professionals to communicate in such a way that others will understand and be engaged. 

I will let Mr. Alda explain it himself. This isn't his talk from this week, but a short video I found on youtube which contains a small nugget of the treasures he shared with us.

Good Communication 101 by Alan Alda

Real listening doesn't take place unless you're willing to let the other person change you ~Alan Alda

Considering what I learned from listening to Alan Alda speak, what could I have done to communicate my concerns better? What could the doctors and nurses have done? To be honest, I'm not sure I could have done anything more at that point. I was in pain. I was frightened. There's something about labeling someone with anxiety that irks me. It's the tone of voice that says "Oh, you're just anxious. Aren't you being silly!" Maybe I'm not anxious. I'm afraid. Fear is not an emotion you hear about a lot these days, but how do you go through an emergency health issue without having some fear? Had the nurse acknowledged my fear and addressed it, things might have been different. She could have explained how they were monitoring my breathing and heart rate. I would have understood. She could have asked if I would feel more comfortable if the monitors were on in the room as well so I could relax and know the monitors were working. 

On the other hand, I don't wonder why this is difficult for medical professionals. Caseloads are so high for all the doctors I see, I don't know how they can possibly get to know their patients. When they are rushing from one room to another, where's the space for any connection? Perhaps what I could do, if I'm in a situation like this again, is try to connect with the doctor or nurse. Ask them about their busy day. I could acknowledge their undoubted frustration with trying to effectively communicate with patients, often patients they only see once or twice a year, in the short time they are allowed for each appointment. How many hours do they work? How often do they have to miss things they'd like to do? How stressful must it be to work like this! 

It's very important for us to see that science is done by people, not just brains but whole human beings, and sometimes at great cost.

Alan Alda
 

Unplug

Online support groups. Podcasts. Brain games. Websites about medications. Websites about exercise. Blogs. Reading blogs. Writing blogs. 

There are so many ways our modern technology can help with chronic health conditions.

Reading email. Paying bills. Ordering birthday presents. Contacting doctors. Ordering prescriptions. Making appointments. Checking appointment schedule. Checking calendar. Reading more email. Keeping up with local, national and world news.

Obligations. Thankfully, computers make it easy to do this stuff online quickly. We don't even have to talk to real humans. 

Contacting friends. Planning social outings and family gatherings. Watching movies. Watching TV shows. Playing card games. Practicing language lessons. Listening to music. Reading comics and books online.

If the computer could cook meals and clean the house, we could sit in front of it all the time and not do anything.

AAUURRRGGHHH!

I've been trying hard to limit my time on the computer. My eyes have been helping as they start to burn after about 10 minutes, but 10 minutes here and there add up. I know I won't be able to get away from it completely, and I don't want to, but I've decided I am taking one day each week to be offline completely. Totally and completely. If anyone needs me on Sundays, they can call or stop by. 

It's not like I'm on the computer all the time and don't do anything else. We have our grandchildren over, I watch over my parents and try to keep track of what they need, Chris and I go for walks, I dance, go out with friends, and go to the local thrift shops. I play with the pup. It's just too easy to get drawn into more and more screen time. After all, there's so much to see and read and hear. It's overwhelming. 

I'm not even talking about the negative stuff. We all know about divisive political stuff, the rumors, the supposed news sites that are promoting extremely biased or blatantly false information. Even if we stay completely away from all this (hard to do), there's too much GOOD stuff online. Too much of a good thing is not good anymore. It's mental indigestion.

But wait! Duolingo just emailed to remind me I'm on an 11 day learning streak - "You're killing it! Keep your streak going!" And Nanowrimo (National novel writing month) starts next week! I haven't posted any new blog articles on my other sites for awhile! I haven't connected with my caregiver's support group in weeks! I haven't even watched the latest episode of Brooklyn 99! 

And we haven't made it over to Riverside cemetery to walk around and see the graves of historic people who are buried there. We haven't gone up to Golden and visited the little shops up there or driven anywhere to see the aspen leaves turning gold. I haven't finished building my patio outside and our free library needs a coat of paint. It's not just the computer holding us back, but the ease in which it pulls us in doesn't help.

Heck, I need at least two days a week totally offline. Will start with Sundays.

I will purposely break my "streak" of learning. Who needs that pressure? (I know, it's supposed to be encouraging.) The blogs will wait, as will Brooklyn 99... and The Orville... and Ghosted.

As for Nanowrimo, I will work on my writing every day (working on a ghost story), but I will use my handy dandy NEO writer, a portable word processor that is very low tech. It is so low tech, it is powered by AA batteries and those batteries last around 700 working hours. It's the perfect word processor for writers because it's hard to edit. I can pound out a first draft without having to overthink every word. It's a typewriter not a computer and I can take it outside with me.

Having a day offline will be a gift to myself. Being outside is pretty healthy, too.

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

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

Stepping Back, Letting Go

Sleep has been elusive lately, especially at night when we're supposed to be sleeping. It's not so bad at first, when I toss and turn and try to get comfortable. It always takes a little while for me to fall asleep, but then about 2 or 3 am, my brain starts to take inventory. At this hour, I firmly believe our own brains are out to get us. They're just sitting in our heads thinking, how many embarrassing memories can we throw out there tonight? How many mistakes can can we bring up. Oh, we love guilt trips!

Why is this happening now? It's just gotten cool enough to really sleep well. Even in the heat, I was sleeping well all summer. Why now?

I can just hear my mentor teacher telling me, "It is Michaelmas, you know." My best friend would say, "It is Rosh Hashana, you know." It's also the Fall Equinox with it's many names and customs throughout the world. It's time to give thanks for the harvest. Time to look back at our own lives and see what our deeds have sown and what they have harvested, good and bad. In a number of these traditions, it's also time to visit your ancestor's graves and tidy them. In other words, it's an honest look at life and death and and our own mortality before the challenges of plunging forward through the shorter, darker, colder days of winter. The earth is going to sleep - bulbs and seeds are dormant, lots of animals hibernate - but we have to get up early and shovel snow off the sidewalk. 

For me, this year, it's been time to look at how to step back and let go. What do I need to do? How much do I need to do? This year, more than any other year, I find comfort in the well known prayer: Grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

My brain starts smirking here because there are so many ways to make me feel guilty. Our family has had to deal with numerous health challenges. Am I doing enough for my parents? My grandkids? My kids? Am I cooking the right kinds of foods? Keeping the house neat enough? Being a good role model? Should I go back to making my own mayonnaise?

I've had to take a step back and let go of any crazy idea that I am perfect and will always make the right decision. This doesn't mean I'm not taking my caregiving duties seriously, it means I cannot control everything. I can't insist that my dad give up his dentures for an entire week so they can be adjusted and he won't look like Bugs Bunny. I can't insist they go to their doctors' appointments. Trouble is, I'm their medical power of attorney and, well, that means I am their primary caregiver and responsible for them. Being responsible for people is, at best of times, a messy business. For my dad right now, I have to weigh the benefits of letting him live as independently as possible in assisted living or having him in a facility with 24 hour nursing care, but where he would have to live in a tiny room without mom. 

As I lay awake early this morning, another memory sneaked through the layers of gray matter. I don't think my brain really wanted to let this one out. It was a memory of a conversation with a neighbor years ago. She was 85 years old and up on a ladder, cleaning out her gutters. We chatted for awhile. She said her kids didn't want her to do this; they said it was too dangerous for her to be climbing on the ladder so high. She might fall. I was ready to agree wholeheartedly with her children, but then she put her head back and started to laugh, "I told them, 'What's it going to do? Shorten my life? I'm 85 years old!'"

Dad is 93. Mom is 88. They might not always make the best decisions for themselves. I'm 60 and I'm not a nurse. I might not always make the best decision as to when they should make their own decisions. We're mucking through this old age business the best we can. I'm glad they can live in the assisted living apartment instead of in a nursing home. They might not have the same expert care around the clock, but they have their own furniture and it's their home. And, well, what's it going to do? Shorten their lives?

“In honor of Rosh Hashanah and Yom Kippur:

O God in Heaven,
As we approach another year,
we ask Your blessings upons us
and upon our loved ones.
Grant us the courage to peer
into our lives,
the wisdom and discernment
to evaluate what we see,
and the strength to act with
resolve to change
whatever needs improvement.”

“In honor of Michaelmas:


When to my being’s depths I penetrate,
There stirs expectant longing
That self-observing, I may find myself
As gift of summer sun, a seed
That warming lives in autumn mood
As germinating force of soul.”

— Rudolf Steiner

And because I need some humor and well as all the serious stuff:

May you live to be 100 years old and a few months.

Why a few months?

So you shouldn't die suddenly.

Happy Autumn! Shana Tova! Happy Michaelmas!

Kinetics - Where Parkinson's Meets Parkour

A teacher who has recently been diagnosed with Parkinson's disease and a wayward student who has discovered Parkour are at the heart of a new film coming out this fall. Sue Wylie based the characters and story on her own experiences after she was diagnosed with Parkinson's. She wrote it first as a play and then, after the success of their performances, she began considering the possibility of creating a film, which would allow her story to reach a much larger audience. To give a teaser, here is a link to the trailer for the play: KINETICS.

Kinetics - where Parkinson's meets Parkour is a story about the desire to move through and past the obstacles in our path. In Parkour, the challenges are taken on voluntarily and consciously; getting past the obstacle on the path is the whole point. For those of us who have been diagnosed with Parkinson's, these challenges are not taken on voluntarily. Parkinson's disease is the obstacle we try to move through every day. When part of the sidewalk in front of me has been broken and pushed up by a tree root. I might not be as fast or as graceful as a freerunner, but getting over it, I can feel a sense of accomplishment as though I had leapt tall buildings with a single bound.

One of my former students is now doing Parkour. He's made quite a name for himself. Dylan Baker is not only really, really good, but he seems to have no problem with heights, dashing across narrow beams 50 ft in the air as if they were setting on the ground. I enjoy watching Parkour as I enjoy watching dance, gymnastics, and, well... any kind of movement accomplished with the human body. Perhaps it's because movement can be difficult for me, but it might be something more. I haven't seen this film yet, but I suspect we'll see that getting past obstacles on our path has to do with more than just our physical obstacles. 

I am so looking forward to seeing this film and sharing it with my family and friends. 

Health Labs Offer CoQ10 Test

And the nice part of this offer is.... it's free! As long as you mention that you read about it on my blog.

Health Labs offers direct to consumer lab testing. You don't have to have a referral from a doctor. This is a service they offer to those who want to have testing for allergies, heavy metals, hormone levels, anemia, or vitamin and nutritional testing. There's more, too, more than I can list. You pay online and your receipt (or ticket) allows you to go to any Quest Diagnostics Lab for the blood draw. They will send the specimen to Health Labs. We've used Quest Diagnostics numerous times. There's one not far from our home.

Generally speaking, I'd rather do just about anything than get blood drawn, especially if I'm paying out of pocket, but I can understand why some people would like to do this, if they can. For people who are trying to use alternative, holistic health care, their MD might not agree that certain tests are necessary. Others choose this because they have no insurance or are under insured. It's a choice that is out there for people who can afford to do this... many of the prices are very reasonable.

This last week, Health Labs came out with their list of the Top 100 Health and Wellness blogs. My humble blog showed up at number 28. I was surprised and somewhat bewildered to find my site on their list. Happy, too, of course, and I was honored to be included. I always feel like I should write back and say but.. but.. have you seen Meg's blog? or Jasmine's or Tom's or Yasmina's or any of the many newer blogs out there written by people I know? There are so many talented writers out there. I wish I had time to read every one of their blog articles.

Anyway, as part of being one of their top blogs and to introduce people to their services, if there is anyone out there reading this article who would like to have their CoQ10 levels tested, go to their site and mention my blog, Studio Foxhoven. Tell them you saw it here and the test is free. 

THE TOP 100 HEALTH AND WELLNESS BLOGS

Oh, and by the way, I was slightly embarrassed to find out my site was the only one without a dedicated facebook page and twitter account. So, I have updated my Studio Foxhoven Facebook page (originally meant for craft work) to reflect my writing. Anyone is welcome to follow me on Twitter (@TerriReinhart), but be forewarned - it's mostly political.

Finding Your Voice

Time for a re-run of an article I wrote six years ago. Speech is an ongoing concern for anyone with Parkinson's disease, but then, it is for many people and I don't think we are consciously aware of how differently we treat those who have challenges with speech. Even having a quiet voice can be a challenge in social situations. In a crowded room, it's hard to hear us. How much easier it is to start a conversation with someone whose voice is loud and clear! 

I have had a number of friends who have struggled with speech challenges. Though conversations with them will take time and effort, they are always worth it. For better or worse, it is all too easy to stop trying to communicate with others, especially when you are met with people who equate clear speaking with intelligence. 

So, here is my article again... titled:  SPEAK UP!

One of my favorite scenes in the movie, "The King's Speech", is during a speech therapy session where the King starts swearing as he practices for the speech he has to give.  This pretty well captures my feelings about public speaking.

Even without a speech impediment, I was a quiet, shy child who would rather eat bugs than have to give a book report in front of the class. I was in a school play, once.  Well, twice, if you count my first role as a tree.  Trees don't talk. In my only speaking role, I was a bad angel and my one line consisted of three words, "Keep the money".  That the main character decided to listen to the good angel instead, may have had something to do with the fact that my lines could not be heard if you were more than three feet away from me. I came to dread the inevitable words from my teachers, my parents, and even my friends:  "Speak up!  We can't hear you!"  That's easier said than done.

As an adult, I worked hard to improve in this area, though I never was able to project well, because leading parent meetings and giving educational talks was a required part of my job. I eventually came to enjoy speaking to groups, as long as I was speaking about something that I was passionately interested in.

That changed when Parkinson's disease became a part of my life.  Even before I was diagnosed, I started having more difficulty with speaking.  My voice became quieter and I started stumbling over my words, sometimes freezing in the same way I freeze when I move.  This was my first indication that I needed to leave my teaching job.  Doing this once during a parent talk was embarrassing enough as I would totally forget what I had been talking about.  I would do this repeatedly.  I didn't want the parents to think I was totally stupid.  Before that year was out, I let my colleagues know that I would not speak to groups at evening meetings.  

Once I was diagnosed and my medications stabilized, things got better.  I don't freeze as often either in speech or while walking. As with most everything else with my Parkinson's, evenings are always off times. I am not articulate in the evenings. Difficulty with speech is also one of the symptoms that immediately comes back as soon as my meds begin to wear off at any time of the day.

I'm not teaching anymore and I'm not required to speak in front of groups.  My friends and family understand that it takes time for me to find the words I need and they are usually patient with me.  So, why, as the King would say, should I give a shit about how I speak?

There's a good reason to care about this.  My family and friends might be used to me but I've found that people respond to me very differently depending on how articulate I am at any one moment.  That includes my doctors, even my neurologists who specialize in seeing people with Parkinson's disease.  If I am having a good day and speaking well, my doctors are more likely to take me seriously and treat me as an intelligent adult.  If my speech is slurring a bit or if I stumble for words, it seems to me that my doctors are more patronizing. 

We tend to equate articulate speech with intelligence.  This is one reason I find writing to be so therapeutic.  I don't slur my words when I write, or at least when I type.  My handwriting I can't guarentee.  If I stumble over what I want to say next, there isn't anyone around to get impatient with me.  I can take all the time I need.  When my first neurologist started reading my articles, she suddenly began relating to me more as a person than a patient.  She treated me as an intelligent adult.  I'm not saying that she treated me badly before; it's just that when time is limited, we all tend to go with our immediate reactions and judgements.  I don't know many doctors who have the time to really get to know all of their patients. 

At the end of the movie, the King has given his speech over the radio, with his speech therapist standing nearby.  He does well, stumbling a bit at the beginning but ultimately delivering his message in a heartfelt and beautiful way.  Afterward, his therapist looks at him and tells him that he still stumbled over the w's. 

"That's okay", the King says, "I had to throw in a couple of them so they'd know it was me."

If a king can do this, I guess I won't worry too much about stumbling over my words from time to time.  Maybe one day, I'll take advantage of a speech study for people with Parkinson's disease. Until then, at least when I stumble, you'll all know it's still me.

Never Give Up

A year ago in April, a couple of things happened which would change my life; nothing monumental, but significant, nonetheless:

I became foster mom to a litter of 5-day-old puppies - and - I met Uncle Donut. Okay, I met a lot of other people, too; but who wouldn't be excited about meeting someone named Uncle Donut?

In this last year, we have raised a total of 9 orphaned pups from when they were brought to the Municipal Shelter to adoption age. Our grandson says, "It's not just a one time thing with Grandma, it's an ongoing habit." Yup. Who could say no when asked to save the lives of tiny, cute, adorable puppies?

And in the last year, I've gotten to know more of the "Never Give Up - Parkinson's and Dystonia" family. It has become an extension of my family as well. There is something special about an online group where, if I don't post for awhile, someone is going to check up and see if I'm okay. There is something special about an online group when they plan a meet-up in Denver and over 100 people show up from all over the country. 

The group was founded by Erika Snider-Jimison after she had been in another, larger group, and she wanted something more personal. Now, she and 7 others (including Uncle Donut - Keith McCoy) are administrators for a group with over 1700 members. Not everyone is very active in the discussions, but that doesn't matter. Some people are more comfortable just reading what the others write. The important thing is everyone is welcome; you can ask whatever questions you want; you can vent, be silly, post video blogs, or eat donuts. 

I'll let some members speak for themselves:

From Erika - "Seeing the love and support this group has for one another online and in person is a testament to why support groups are so important. Starting this group has been my most rewarding achievement to date. When I think of NGU I smile."

From Terry W - "Some say I inspire them to do better of themselves. I say each one of you are an inspiration to me. To see the different ways that a person can deal with all the negative issues of these afflictions and still be a light to all around them. My hat is off to all of you.. You are the blessing that has renewed my heart and brings a smile to my face every day."

From Keith - "Parkinson's Disease is not an "old persons disease", it affects all ages, genders, races, etc.... There is no cure and it's a terrible disease to have, especially if Dystonia sets in. These diseases are painful and I don't wish them on anyone. I have both plus fibromyalgia, edema, osteoporosis, etc.. We struggle every day to do what used to be easy tasks, like brushing our teeth, eating, getting dressed and more. It's a degenerative disease that cripples you. It not only affects you emotionally and physically, but it affects those you love. Don't feel sorry for me, but laugh with me. I'm known as Uncle Donut in my support group and they're amazing people We need a cure."

Keith asked, "What stuck with you from the Meet and Greet?" Some of the answers are below:

• The true warmth and genuineness of everyone! From the greetings to the hugs, to the offers of help! It was humbling!
• It would be how comfortable it all felt.
• How I wasn't self conscience about how I walk or movements I make, because, everyone understands.
• I still try to hide it, especially at work. It's so exhausting.This weekend I was able to just let the tremor do its thing.
• How real and genuine everyone is. The warmth of the hugs. The feeling of having known each other for so long. The generosity. The willingness to help each other without blinking an eye. The strength, courage and laughter through struggles.
• The thing that stuck with me the most was "no fear". Through storms, dystonia, nOH, for the first time (in public) there was no fear from those around me. I had no fear of people not understanding. It was a wonderful feeling! I cannot thank you all enough for giving that to me!!
• Beauty. Erica's video celebrates the beauty of NGU members. You have to see them in person to appreciate it. Gorgeous. I felt attractive myself in their company. (my note - when the people around you can see the beauty in every person, it's easy to see and feel the beauty in yourself)
• The comfortable feeling to be around folk that understand! No explanations - NO hiding symptoms - HUGS instead of DRUGS!! And no one expects or suspects anything...WE CAN JUST BE!!
• By only being there virtually through all the wonderful posts, it is family. A sense that we are not alone, and among others that understand the daily struggles and accomplishments. I will be there next year!

Look at this photo - these are the faces of people with Parkinson's and Dystonia. Yes, there are some family members in the picture, too, but our youngest group member is 3-years-old and has Dopamine Responsive Dystonia. Okay, her parents are active in the group for her. We have other children with DRD. We also have young people in their teens and twenties with juvenile onset Parkinson's disease. The oldest member of the group is 82. I'm almost 60 and in many PD groups, I have been the youngest. Not so in this group and it's not just because I've gotten older! 

The Meet and Greet included a catered lunch, T-shirts, and two keynote presentations. The first was given by Jasmine Sturr, who has juvenile onset Parkinson's disease. She spoke about the non-motor challenges with Parkinson's, making a good argument for not describing Parkinson's as a movement disorder, redefining our language to describe PD as a "Systemic Neurological Disorder". Her entire talk is on her You tube channel.

The other speaker was Navin Kumar. Navin has Parkinson's disease and he also has a partially mechanical heart because of a congenital heart defect. He has had 5 open heart surgeries. He is also a champion table tennis player and is, right now, in Germany to represent the US in the Paralympics in table tennis.  

Online, the group is growing every day. This will be a challenge for our administrators and all of us. Can we keep the personal, community feel with over 1700 members? For those who cannot come to the Meet and Greet, how can we include them during this special time? As the numbers grow for the Meet and Greet, how do we reach out to all the new folks and not just hang out with those we know and are comfortable with? Can we have some fundraising to help members who would like to come, but can't afford the trip? Or use some of us who are in town to provide host homes?

Teri, Terri, Terry, and... Teri! 

I believe this group can do it. We have amazing leaders who really believe in this community. In Denver, Keith Uncle Donut McKoy made sure to greet every person in attendance and he had his picture taken with each one of us. This year, we added a picnic after the Parkinson's Vitality Walk, just to give everyone more time to get to know each other. 

Nearly everyone came. We even brought the puppies.