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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.

Two More Days to Endorse Nominees for Wego Health Awards

Terri Reinhart

First things first. I am not asking you to endorse my nomination. You can if you'd like, but that's not at all the point of this article. If you're reading this, you're probably already familiar with my blog. I want you to see all the other wonderful blogs and podcasts that are out there in the world. I want you to meet more patient leaders who advocate in many ways. So, endorse if you'd like, but find at least one person you hadn't known previously and endorse them first.

CLICK HERE to see the list of nominees for WEGO Health Awards. Here you will find blogs, podcasts, patient leaders, collaborators; people who share through websites, twitter, facebook, instagram, and youtube. Their focus is on wellness, illness, coping, advocacy, survival with physical challenges and mental health challenges, and caregiving. Just about any health subject you can imagine is represented here, along with information by and/or about the author, blogger, advocate, etc. 

Find a nominee who has few or no endorsements. Look at they do. See how many "best kept secrets" are out there. Three of the winners are chosen simply by how many endorsements they receive. Two are chosen by the WEGO panel. I'm glad everyone gets a chance to win this way. The popularity contest may have merit - if you have thousands of followers, then you must be communicating something which has been helpful to many people - but not having followers doesn't mean you aren't making a difference, it just means not many people know about you.

We're down to two more days to endorse patient leaders. Hopefully the information about the nominees will stay up on the website after the contest is over. The real winners in this contest are all of us. This is a wonderful way to find the gems hidden all over the internet.

Kate

Terri Reinhart

Two pieces of news came to me the other day, almost at the same time. The first was news we all heard: Alan Alda came out publicly to say he had been diagnosed with Parkinson's disease 3 years ago. As he was diagnosed quite early, before the classic symptoms of PD had begun, he is still just beginning this journey. Not long after reading this, I received a message to say Kate Kelsall had passed away on Sunday, July 29, ending her journey with Parkinson's disease.

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Ask anyone who knew Kate and the first thing you'll probably hear is "She was a force to be reckoned with". Kate took the Parkinson's community by storm. She had DBS surgery and, with Valerie Graham, was a patient liaison for patients having DBS and they started the Bionic Brigade support group. She talked Paul and Carolyn Zeiger into starting a support group for caregivers. She danced, played accordion, went to the World Parkinson Congress in Montreal, won a channel 7 Everyday Hero Award with Valerie, among many, many other things, and... she wrote a blog.

In her very first entry, dated September 27, 2006, Kate talked about being approved for long term disability benefits, thus confirming what she knew already: Parkinson's disease is "chronic, permanent, progressive, and incurable". She had hoped she would be the 2nd miracle which Pope John Paul II needed for his sainthood application or at least the "DBS or PD poster child". In the last paragraph, she makes a sobering observation: The letter further stated: “In no event, will benefits be payable beyond October 1, 2015.” Oh well, perhaps I won’t have to worry about it. I doubted if I’d even be around with advanced PD in 2015 or as Nora Ephron described it her latest book, "I Feel Bad about My Neck" as “dancing around the D word.” 

Kate talked about her DBS surgery, dancing, her challenges with speech, her frustrations and her victories. She listed resources, talked about various forms of exercise, and discussed ways to make our lives better. She interviewed others and encouraged guest bloggers to allow her to publish their writing. She was the first person to publish my articles. I'm not even sure how she found out about my writing. 

She also wrote about death. She didn't even "dance around the D word". Kate talked about the death of her mother: "We fear that our Mom who suffers from Lewy Body Dementia (LBD) will either choke to death or starve to death." and "Aspiration pneumonia, a leading cause of death with Parkinson’s patients, often develops as a complication of mealtime swallowing problems, leading to the inhalation of food and drink."  She answered one reader's question on October 16, 2007 with: "Frankly, my greatest worry is when and how I am going to die. The only blog posting that I started but didn’t finish was about dying with or from PD."

I argued with Kate about this. We got together a few times and we corresponded a lot through email. She told me she certainly wasn't going to live to be 80 years old and that she'd probably die of aspiration pneumonia. I insisted that we don't die from PD, but with PD. She smiled. She was sure she was right. We argued amiably about a few other things, too, like whether one could drive with dystonia and the proper length for blog posts. This one would already be too long in her opinion.

It's humbling to realize now, but Kate was right. When she died of aspiration pneumonia, 21 years after she was diagnosed, she was 67 years old. Parkinson's disease not withstanding, she barreled her way through life, always working to provide support and resources for people to make their lives better. It's really hard to imagine any Parkinson's function without her.

Well, Kate, take a little breather then, wherever you are, keep on being the force you were here on earth. Sing! Talk and yell and shout and dance! You've finally left your PD behind for good.

 

 

Our Own Fab Five at Work

Terri Reinhart

Like many people, I've been enjoying watching the new Queer Eye series on Netflix. And like, probably most of the people who watch the program, I fantasize about having the Fab Five come to our home and help us redecorate, cook, buy clothes, change our hairstyles, and give us a pep talk to get us revved up about our lives.

Reality check: 1) Getting accepted for a Queer Eye makeover would be kind of like winning the lottery. 2) Imagining what the guys would say about my sense of style is humbling. Maybe it's best to figure out how to do this on my own.

I'll admit, I don't want advice on clothes. Two pairs of jeans, two pairs of shorts, some t-shirts and other odds and ends and I'm good. I'm taking my fashion hints from my husband. Oh, and... no more skinny jeans. Been there, tried that. At my age and shape, they make me look like a lollipop. I wouldn't mind help with cooking, but if I'm honest, I really just want someone to cook for me.

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Our Fab Five this summer are the foster puppies. Above, you can see 4 of the 5 taking my crocs out to the garden. Obviously, crocs are not in style for me this year. Jeans are in style. Long pants in 90+ degree weather. When I rebel and wear shorts, they remind me with their needle sharp teeth and claws.

They help with the landscaping, too. So far, they've taken out three types of Sedum plants, a woodsorrel, my peppermint, and the ornamental grass. The plants they've decided to leave to grow in my garden are bindweed, crabgrass, lamb's quarters, and common mallow. Interior design consists of numerous dog beds, pens, and pee pads. Oh, and dog toys. My new hair style is carefree. 

Taking on the care of foster puppies on top of all my other responsibilities and on top of trying to take care of myself and manage my Parkinson's/Dystonia challenges doesn't make a lot of sense. I don't get enough sleep and it's a lot of work. There are days when I crave just a few hours without a puppy whining or a mess to clean up. Aside from being with our grandkids, this is the best retirement job I could imagine.

What the puppies are really, truly good at is giving us the opportunity to sit and play and just be loved. 

 

The Resilience and the Fragility of Life

Terri Reinhart

The young robin must have flown into our window. When we arrived home after errands, it was lying on its back, perfectly aligned on the arm of our porch swing as though it had just decided to take a nap. Though I knew it was dead, I sat and held it in my hands, marveling at its perfect beauty and almost willing it to open its eyes again. Of course it didn't and I buried it on the far side of our raspberry patch.

I'm tired. Two funerals in one week have left me and my family physically and emotionally exhausted. Being greeted by a dead robin was not among the list of things I could deal with right then. 

Life can seem, at times, to be oh, so fragile. A little bird still learning how to control its flight, hits the glass at just the right place, just the right angle, just the right speed. A young woman's doctor doesn't realize how severe her infection is. A teacher finds out he has cancer. A man with a heart of gold dies of a massive heart attack. 

All life is a gift.

I've cried and yelled and shook my fist at God many times these past weeks. How dare he let a 32-year-old woman die! How dare he strike good men with good hearts in the prime of their lives! (okay, I think retirement age is prime) And why the robin? I like robins. 

"All life is a gift and it owes us nothing. It doesn't owe us longevity. It doesn't owe us good health or wealth or happiness. It is pure gift." 

I don't know the source of this saying. When I heard it the first time, it sounded almost cold - too objective. The more I read it, I began to see the wisdom in these words. We had the gift of our niece, Dani, for 32 years. In our minds, it's not long enough, but we had 32 years of the gift of her life. Our students had the gift of Mike Baker's teaching, humor, and compassion for many years. I can't begin to tell you how many people were touched by the gift of Dean Stefan's humor and warmth and generosity. To the universe, the universal, the supreme Good: Thank you for the gift of these people in our lives.

After experiencing a time when life seems so fragile, it's good to also remember how resilient life can be. My dad will be 94 in September. He didn't do any of the right things to assure longevity - except for having longevity run in his family. Our friend, Carolyn Osborn is, at 72, one of the few remaining survivors from the era of polio and the iron lung. There have been times she almost left us, but somehow, miraculously, she has come back every time. We've raised orphaned puppies from day 5 weighing a few ounces to wriggling piles of love, puppy kisses, and leaping on our laps. Our grandchildren and our gardens are growing as quickly as the weeds.

And the other night I dreamt of a tree growing at the back of our raspberry patch. As it grew, white blossoms appeared. They didn't turn into flowers, but out of each one, there came a tiny, living bird.

And they started to sing.

 

In Fits and Starts - Getting things done the PD way

Terri Reinhart

I'm waiting for my next dopamine surge. 

We folks with Parkinson's disease know all about dopamine. We know what happens when we don't have enough and we know what happens when we have too much. We also know there isn't any such thing and having it perfectly balanced. So, when we want to get things done, we play the dopamine game, otherwise known as doing things in fits and starts. 

Wake-up! What kind of day is today? Is it the slow motion, not gonna accomplish much today sort of day or is it the ohmygodIfeelgoodtodayandIamgoingtogeteverythingdoneonmytodolist sort of day? Okay, in general we may tend to be more the tortoise or more the hare, but day to day is a different story. How our dopamine system is doing and how it will all work with the medications can result in a roller coaster ride between dopamine surges and dopamine crashes.

This is because a lot of things affect how our dopamine system works. It's not just the medications. If we don't sleep well or if we're under a lot of stress, the meds are not going to work as well and it's not going to be easy to stay motivated. Did something exciting happen? How much caffeine have we consumed? Sometimes we don't know what the heck is causing our dopamine levels to fluctuate more than the prices of gasoline. 

We do know what this means in a practical way. 

A dopamine crash is easier to understand. We know we're going to feel lousy some days. No energy. No motivation. We'd procrastinate if it didn't take too much work. It's the day when we say, "I have Parkinson's. You can cook." 

A dopamine surge is when we expect everyone to stay out of our way, thank you very much, because we're going to Get It Done. It's kind of like an adrenaline rush, but without the racing heartbeat. It's more of a racing brain: "I think I can I think I can I think I have a plan.... I think I can rewire the light in the bathroom and replace the medicine cabinet  - myself - and then build a patio  - today - now". I like projects anyway, but during a dopamine rush, I like BIG projects.

bathroom.jpg

I suppose it would be better for us to pace ourselves. Working for a shorter time everyday would help us to avoid a few of the hills and dives of the roller coaster. If we'd pace ourselves really well, we'd get things done, maybe, and not wear ourselves out to the point where we crash. I think. 

On the other hand, a dopamine surge can be a lot of fun as well as being productive. I haven't gotten the patio done yet, but I'm pleased to say I rewired the light and put up two cabinets and a new towel rack in Emma's bathroom. It took three days, several trips to Habitat Restore, and a mad dash to the Ace Hardware store where, 20 minutes before closing time, a clerk found what I needed and gave me a crash course in what I needed to do. He made sure I remembered everything so I could repeat these instructions to my husband. Sigh. 

That was 5 days ago. I'm glad it's done because I used up all the energy I had stored up. We're having pot pies for dinner. I haven't accomplished much of anything today, but that's okay. I'll save my next project for my next dopamine surge.

Olly Olly Oxen Free! Is there a Movement Disorders Clinic hiding near me?

Terri Reinhart

They're hiding out there somewhere. As long as you know what you're looking for, some may even be in plain sight. For many patients with Parkinson's, the rare neurologists who truly understand Parkinson's and even rarer Movement Disorder Clinics will continue to elude them. 

We're lucky here. We have a number of sanctuaries where these doctors can remain safe and continue adding to their knowledge. They are rarely seen in the wild, or even outside their sanctuaries, not because they can't handle the freedom, but because they are kept too busy to be much more than captives in their offices. 

Because they are so rare, many people will drive hundreds of miles just to see one. Other people will never have a chance and so they take their chances on being seen and treated by doctors who are general neurologists or family practitioners. It's not always a bad thing. There are some less specialized doctors who either understand Parkinson's or are willing to get the information they need from one of the sanctuaries. 

There are also the other stories - a patient who is told they don't qualify for DBS surgery because they aren't bedridden yet; a doctor who prescribes a large dose of Sinemet in an odd combination (10mg carbidopa/250 mg levadopa) to a new patient who then goes through agonizing nausea and vomiting from their medication dose; a doctor who tells a new patient that if this dose doesn't work, double it. Some doctors think they know enough, but don't. My father's general practitioner gave him the diagnosis of Parkinson's disease, then refused to refer him to a neurologist. My first neurologist told me my symptoms were just like Parkinson's, but that's not what it was. He didn't refer me to the Movement Disorder docs even though they were just down the hall. 

Treating Parkinson's disease, finding the right combination of medicines and other therapies, is an art. I consider my neurologist to be a master artist as well as an amazing doctor when it comes to how she handles my treatment plan. I know I'm privileged.

There are many reasons patients may not be able to see a Parkinson's specialist. Some patients don't have adequate insurance to pay for a specialist. They might live where there are no Movement Disorder Sanctuaries.. I mean Clinics. They might have one close by, but it is so busy, their visit must be scheduled months in advance. 

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Movement Disorder Specialists, we need more of you. We think it would be nice for you to have a smaller caseload, fewer patients to keep track of and treat. I'm sure you'd enjoy being in the sunshine now and then. It would be nice to see you out in the wild - as well as in smaller cities and more rural areas.

Some sources say we are facing a shortage of doctors. Others say no, it's not a shortage of doctors, we're just not efficient. We should be using more Nurse Practitioners and Physician's Assistants. A number of sources feel we have too many specialists and not enough general practitioners. Too many specialists? I don't think so. When a specialist has such a high caseload, you have to call at least 4 months in advance to make an appointment, I say there aren't enough. 

When patients live too far away to go to a specialist or, if they go, they drive hours each way, we need to find a better way to serve those people.  Asking in our support group about how far people drive to see their Parkinson's neurologist, the answers ranged anywhere from 20 minutes to 7 hours one way.

We need General Practitioners, too, of course. They need to be the ones who really get to know their patients. As they are seeing patients for all sorts of ailments, they also need to know when to refer them to someone else. How can one person be a specialist in every possible disease and disorder of the human body? It's just not possible. Specialists help with the efficiency of modern medicine. At the very least, we need Nurse Practitioners and Physician's Assistants who can specialize in different areas. 

We don't have the answers yet. Like most people in the US, I'm dreaming of the day when we have health care for everyone, the day when income inequality isn't so completely off balance, the day when college tuition and medical school tuition is not so prohibitive and school loan repayment doesn't threaten to bankrupt average people and become one more reason for the high cost of health care.

Until then, keep your binoculars handy just in case a shy, elusive movement disorder specialist happens to be spotted in your area. 

And here is a handy guide for locating them:

Movement Disorder Specialist Finder    

 

Wisdom and Strength and Love Shall Grow

Terri Reinhart

Having a sympathetic young police officer NOT give me a speeding ticket is one of the perks of being an elder, but being an elder also means learning how to let go. We have to let go of bits of ourselves, what we used to do, who we used to be. With any progressive neurological disorder, letting go starts a lot sooner.  What happens when we get to the point where there are things we can't do anymore? 

Okay. Stop right here. I know what you're thinking. I've heard it before, many times. Please don't send me the quotes and memes saying, "Stay positive! Don't ever say you can't do something!"  I don't want to see the videos of 99-year-olds riding skateboards, climbing mountains, or running marathons or the videos of 99-year-olds with Parkinson's riding skateboards, climbing mountains, and running marathons. I get the point. If they can do it, so can I.

Right.  

The message in these memes and videos? Running marathons = awesome, walking with a walker = not cool.   Climbing mountains = awesome, needing help to climb stairs = not cool. Riding on a skateboard = awesome, riding a mobility scooter* = not cool. If we must have Parkinson's or if we must get old, be like the awesome ones. I know it's all meant to be inspiring, but too often it's discouraging. Nope. I obviously can't be awesome because, try as I might, I'm not going to climb mountains or run marathons or ride skateboards.

Stop again. Breathe out. All those memes and videos? Hit the delete button.

Now, a reality check. Giving up the awesomeness of climbing mountains, running marathons and skateboarding isn't difficult for me. I don't do those anyway and, if I'm truly honest, I don't want to. It's when I have to give up things I love to do, that's my true test.  

Because of fatigue issues, I've had to give up a few things - working full time or  even part time, volunteering regularly, doing more than one major activity per day and not more than three per week. I've been very lucky. What I've had to give up, I've been able to replace with other activities like naps...and, well, other things... like naps.. and... Okay, instead of felting intricate pictures and figures, I'm knitting little animals for my grandchildren.  I can join my husband on his daily walks if I adapt and use my cool scooter*. I can, occasionally, be in a clinical study and once in awhile, I even get paid for it.

We all respond differently when we are faced with chronic health challenges and the challenge of growing older. Some will choose to not go gentle into that good night, but will, as Dylan Thomas' poem advises, rage, rage against the dying of the light. Some will pretend their challenges don't exist and try to pass as a younger person in perfect health. Some will be convinced their challenges will go away if they are just positive enough. Some will climb mountains and ride skateboards till the day they die. 

I don't want to spend the rest of my life raging or feeling guilty because I'm not climbing mountains.

My mentor is Dr. Paul Zeiger, engineer, scientist, university professor, yoga teacher, poet, and PWP (person with Parkinson's). He says we are given many opportunities to reconfigure our lives according to the resources we have available to us. He knows. He and his wife, Carolyn, have had to do this time after time. Paul says that growing old is the most difficult work a person will ever do. For some of us, a marathon is also known as getting through each day.

There is a verse which is said by the first and second graders at the Waldorf school at the end of each day. It allows the children to put their academic work aside, let it rest.

All my doing now has ended.
What I have learned shall rest.
When I have done my very best,
wisdom and strength and love shall grow
and I will bless all those I know.

We tend to identify ourselves by what we do and when we lose the ability to do something, it can be like losing a part of ourselves. We have to reconfigure ourselves and find out what this new.... or older body can still do. If we get stuck trying to hold on to who we were once upon a time, we're not leaving room to discover who we are now. The time for doing some things may have ended, but we can let them rest and trust in what we have learned from our doing.

We have to grieve and maybe even rage a little. But what if we take Paul's advice? What if we could let go of those lost parts of ourselves and let them  go gentle into the good night? If Paul and Carolyn's lives are an example, we know if we can let go and let those things rest, our lives are not empty, but will include wisdom, strength, love, and the capacity to bless those around us.

Skateboarding is optional.

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*My mobility scooter IS cool. Some 12 year old boys told me so. It is a TravelScoot, the best little scooter ever. Thank you, Roger, again and again, for blessing me with this gift and the bigger gift of a connection with our family in Luxembourg.

 

 

 

The Privileges of Being An Elder

Terri Reinhart

Last night I drove our daughter to her play rehearsal. We made good time, but as we approached the turn into the parking lot, I glanced in my rear view mirror and saw flashing lights behind us. A police car. With flashing lights. Maybe he needed to get around us? I turned and he turned right behind me. I parked and he pulled up and stopped, blocking my car.

Emma got out, saying "Bye! Good luck!"

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Apparently, I had made better time than I'd thought and the nice young policeman seemed to think I could've gone a wee bit slower. He asked to see my ID, registration, and proof of insurance. I resisted the urge to give him my Medicare card. He took the info and disappeared into his patrol car, which was still blocking me from going anywhere. 

Several thoughts went through my mind. Would there, could there be any chance of getting off with just a warning?  Yeah, right. I told myself there was no way in hell I'd be that lucky. You see, I remember very well which friends got warnings and which of us got tickets. The ones who were let off the hook were almost always very attractive females. Never happened to me. I sat, waiting and wondering how I was going to tell my husband about this and how much mileage he'd get out of it. And how were we going to pay the fine? Another fine mess I've gotten myself into, Ollie. 

The policeman (did I tell you he was young?) eventually came back and, miracle of miracles! he gave me a warning! It was a very gentle warning, too. He understood. It was the hill. It was so easy to get going too fast. He said it knowingly as if he was admitting it had happened to him more than once. But, just be careful, he said, because the fine is pretty steep. 

I realized how privileged I was in that moment. Not only am I white, and female (occasionally it's a help), but I don't think he expected to see a grandmother when he pulled me over. All the way home, I basked in the wonder and privilege of being an elder. I didn't even have to be gorgeous. I just had to be grandma. 

And today, I went to the thrift store and got my senior discount, without even asking. Life is good!