Dentist Phobia

My husband recently went to the dentist. He came home with instructions to get an electric toothbrush, a waterpik, special toothpaste, and a gel for dry mouth. He's taking care of his teeth, though he complains about how long the routine takes. "I'll see you in an hour or so," he moans as he closes the door and starts up the toothbrush. 

Now he's telling me I should go in for a dental check-up. 

That's like gently suggesting I make a visit to the local torture chamber. "It'll be fine, honey, just think of the nice back stretch you'll get on the rack." Right. With Parkinson's and Dystonia (or vise versa), there's enough torture without adding to it. 

I do need to go in. I know I do. Dental health is important to our overall health. The other day I took my parents in to see the dentist. They both have dentures. Dad got his before he was 30. I don't exactly have good DNA when it comes to teeth. Seeing my parents struggling now with dentures that don't always fit properly (though that is probably due to using too much dental adhesive) and sores on their gums, I figured it's time for me to think about getting my teeth checked. First, however, I will talk with my neurologist.

There are a few things I know: 

~ I can use an electric toothbrush only if my meds are working well and my dystonia is not acting up. Otherwise I run the risk of forcefully cleaning out one of my nostrils.

~ Some of us are at high risk for choking. While dentists have helpers who suction out the saliva from our mouths, they either can't get it all or they ask you to close your mouth around the suction tube. The latter will set off my dystonia quicker than just about anything. I get tired of having to explain this. They don't always believe me. One dental assistant physically closed my lips around the tube. I feel about suction machines like many dogs feel about vacuum cleaners.

~ Epinephrine, which is in most dental local anesthetics, can interact with our Parkinson's meds. What does this mean? At one visit, the dentist accidentally injected the local anesthesia into a vein. I started to shake uncontrollably. My heart was racing. I started going into a dystonic storm. A reaction like this should have prompted the staff to call 911, but they didn't. They let me shake and twist with a racing heart for what seemed like hours. I'm not sure how long it really was... maybe 20 minutes? It was terrifying.

~ Don't take Ibuprofen before a visit to the dentist. It can make your gums bleed, which then makes it easier for the dentist to inject into a vein. 

~ Don't go to a budget dentist. In all the articles I read about Parkinson's and dentistry, they all agree that our visits should be shorter so our medication doesn't wear off during the visit. It won't happen during the assembly line dental work at a budget clinic. 

Which brings me to another challenge. When people talk about Universal Health Care (Medicare for All, etc), there's never a mention about dentistry. Medicare does not pay for dentistry at all. You have to purchase a separate policy for dental coverage. I have a dental policy which covers basic check-ups and basic cleanings. Nothing else. The local dental college sees patients at about the same cost as the budget clinics. The dental college is on the other side of town, which means up to an hour to drive each way. Both the dental college and the budget dentists require either payment up front each visit or a contract with monthly payments. Dentists take one look inside my mouth and plan their next overseas holiday. There are programs to bring dental health care to children, but no programs for adults.

I know I'm not the only one out there with dentist-phobia, but before I embark on this adventure, I'm going to do some more research and talk to my neurologist. 

The Hare is Back

My kitchen needs rearranging. Currently, the baking supplies can be found in any one of four different cupboards, the pantry down the hall, or on the shelves in the laundry room. Generally, I don't pay much attention to my lack of efficient organizing. It's like when my son learned how to type. He never caught on how to do it the right way, but he was still able to pass the speed test at school. I'm not trying to pass a speed test on baking or even on getting everything ready to bake, but I would have liked to be a wee bit more together when my friend came over to bake with me this morning. 

First of all, the reason she offered to come over and help bake is because I had to use up some of the 3 1/2 gallons of buttermilk in my refrigerator. I didn't want it to go to waste. Why did I have 3 1/2 gallons of buttermilk in my refrigerator? Because I didn't want it to go to waste. The community pantry had about 15 gallons of buttermilk and, at the end, workers told me, "Take it! Take it!" I should be commended for not taking all of it.

What was I talking about? Oh yeah, the kitchen. I'm ready to sit and ponder how I might redo the cupboards. While I ponder, I'll knit. Knitting is cool and it helps  me think. I wonder if I should make a sweater or a poncho for the little kitty I made. A sweater would look nice, but a poncho would be easier. Maybe I'll go look up a few patterns on the computer.

My desk is a mess. I need to reorganize this area, too. Since I watch movies on this computer and knit at the same time, I have my yarn basket under the desk. Brilliant move, methinks. The knitting needles I used on my last project are sticking out of the pencil holder and the pattern I'm working from is.. where? back in the dining room. My other knitting supplies are in my work room, which I have been rearranging and reorganizing. This is why there are boxes filled with odds and ends, piles of books, and dog toys all over the floor.

But I digress....

I should be making dinner. 

Leftovers. I'm cool. Pizza doesn't take long to warm up so I have time to get something else done first.

Distractible? Yeah, but I don't mind. It’s kind of nice for a change. For the last six months, I’d found myself dragging more and more. I thought I’d learned to appreciate the Way of the Tortoise, but the Tortoise wasn’t moving much anymore. I wasn’t ready to learn the Way of the Potted Plant.

The worst of it was, I didn’t care and I knew I didn’t care. I didn’t want to not care. It was depressing. I had gone four whole months without going to coffee with a friend. I hadn’t prepared for the holidays. No baking. No cards. No shopping for gifts. This was not acceptable. I figured it was related to my medication and decided I would definitely bring it up with my neurologist.

Then, right before Christmas, I realized I had run out of the drug which happened to be the one that had introduced me to the Way of the Tortoise. I ordered it, but I knew it would be a week or more before it would arrive. Unintentionally, I took on the experiment of going off this drug for a week. 

This is where I'm supposed to say we're really not supposed to do this and warn you all to not do what I did. It's still good advice. I probably should have called my doctor, but it wouldn't have gotten the meds to me any faster. No lectures, please, or if you must, at least don't shout. My startle reflex is drinking espressos again. I’m a wee bit jumpy. I'm back to the Way of the Hare.

After a week off the drug, I wondered why the heck I was taking it. Granted, I was having a lot more dystonia. I also had a lot of nervous energy, but the upside was I got more sleep - good deep sleep - than I'd had in a long time. I had energy. I didn't care if I was a bit scattered. Dystonia can be painful, but as things go, I’d rather feel pain than not feel anything.

My neurologist agreed with me and said I could and should stay off the drug. She then explained something else. I am now 60 years old. I am no longer a young Parkinson's patient. We have to look at drugs differently now, she said. Because I'm old, I said. My doctor smiled. Older folks' bodies respond differently to medications. Usually, it means there's more of those non-marketable effects we're all so very not fond of. My body tends to respond to drugs in rather weird ways at the best of times.

I'll take that. I'm just happy to have some energy again... even if it means it means more dystonia. It's a matter of what's harder to put up with and, well... how normal do I have to be anyway? 

Was that a ....? Never mind.

There are a lot of places where dogs are allowed to visit nowadays, but hospital infusion centers are not the likeliest places to see someone in a wheelchair with a poodle on their lap. It worried me. Had I really seen this? Sure, the poodle could have been a service dog, but .. well, how many service dog poodles have we seen? I turned to my daughter. Dare I ask? 

There's a new commercial out about Parkinson's disease. It's presented as an awareness ad; awareness of the lesser known symptoms of hallucinations and delusions in Parkinson's. The ad is very emotional, and I understand because these symptoms can be frightening, but it's also stirred up quite a lot of mixed feelings within the Parkinson's community. I mean, come on! It's hard enough to feel confident socially. Now you're going to blast it to the world that we're seeing things? The ad doesn't start explaining delusions, but just the word... it doesn't sound good. 

And that's part of the problem. As soon as we hear of the possible issues that can affect our thinking, we immediately want to say, "but that's really rare. It doesn't affect most people", and by that we mean, "not me". What we also mean is, "dear God, please not me". All sorts of our culture's worst insults come to mind, especially as they're being used often by and about people in politics these days: crazy, loony, lame, insane, idiot, screw loose, mad, demented, mental, or sad. The stigma of mental illness is often more damaging than the illness itself. When there is such shame attached to any health condition, it makes it much more difficult for people to ask for help.

Okay, with this in mind, having an awareness ad about hallucinations should be a good thing, right? By the way, this ad is put out by a drug company. Oddly enough (or perhaps not so oddly), the ad doesn't mention the fact that a lot of these symptoms can be caused by certain Parkinson's drugs. There's no suggestion to have your doctor evaluate the meds you are already taking. The patient in the ad is portrayed by an actor. The sound effects and music are eerie. The whole feeling is one of sadness and fear. But they tried. They are honestly trying to bring awareness to these symptoms, the symptoms we don't want to talk about. And sell drugs. Let's be honest. They're marketing their product.

So how can we bring awareness to this type of issue without portraying the person as sad and suffering and dependent? ... without portraying these issues as a tragedy? Could we provide a somewhat more positive picture? When my able bodied friends see a commercial like this, I brace myself and get ready to hear their condolences on having this horrible, tragic illness that has obviously robbed me of having any sort of a normal life. 

Would someone like to stand up and tell me what normal is? 

On the other hand, there are those typical drug company commercials which show beautiful, cheerful, active adults swimming, climbing mountains, taking their grandchildren to the park... and hey! They are beautiful, cheerful, and active because they take this drug! All the while, of course, you hear the narrator speaking as quickly as possible describing all the possible side (ie: non-marketable) effects of this drug and all the ways it can kill you. Let's not go there.

I hallucinated once - only once that I know of. I was in a restaurant with my grandson and I watched a family come in. Someone was pushing a stroller that had a doll in it and someone else was holding a chihuahua in their arms. A couple adults took turns holding the baby doll. Why would anyone bring a chihuahua into the restaurant? And, putting the dog in the high chair? I said something to my grandson and he looked at me and laughed and said, "Grandma, you're silly!" That was my first clue that just maybe my brain was playing a few tricks on me. Will it happen again? I was relieved when I finally asked Emma about the dog I saw at the infusion center. She had seen it, too. Someone really and truly had a service poodle.

What do I need to know about hallucinations? The one I had was right after starting on new medication that gave me insomnia. I've since talked to others who've had hallucinations when taking that particular drug. My experience with hallucinations was startling, not scary. All the same, it took awhile before I told anyone about it. Had I seen this ad right after my experience, I would have totally freaked out.  

While I don't have THE answer, perhaps it's time to let a group of people with Parkinson's create these ads.

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.