Kate

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.

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.

In Fits and Starts - Getting things done the PD way

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.

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?

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. 

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    

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.

When Do You Call It Quits?

My friend, Ed Sikov, recently wrote a wonderful article about writing. With the title, "How Do You Know When Your Writing Career Is Over?", I was almost too scared to read it, wondering if I'd find out my writing career should be over. It's way too easy for me to believe. Scared or not, I read it anyway. Ed's a friend. He's also someone I consider to be a real writer, he has written books and articles and gets paid to do it. Any advice he gives, I'll take seriously.

Soon enough, Ed reassures his readers. All we have to do to be a real writer is... write. Write consistently. Don't say we're going to write, just do it. Don't stop because we get rejection notices or because someone thinks it's a silly thing to do (Ed words all this much better than I do). I would encourage any and all writers to read this article, more than once. Print it out and keep it handy for those times when you get discouraged.

Then, about halfway through his article, he speaks about his diagnosis of Parkinson's disease and how this affected his writing. What he had been doing for years as a professional writer didn't work anymore. He didn't call it quits; he changed how he was writing. This article of his is proof he still is very good at what he does.

I would also encourage any and all people with Parkinson's disease or other chronic health challenges to read this article, print it out, and keep it handy. It's easy to get discouraged when it's harder to concentrate, harder to find the fine motor control, harder to find the energy to do things we used to enjoy so much. We have to learn when to take a step back and change how we do things, not call it quits.

Craft work was a huge part of my life for a long time. It's not that I cannot do it anymore, but the end product of my art work was no longer up to my standards. So I called it quits on a few things, like felting and artistic books. I couldn't think art anymore; couldn't get into that special art zone. I called it quits on broom making too, but that was for another reason; it's just too hard physically. I'm cleaning out my studio and giving a lot of art supplies away.

I still make simple books from time to time and I knit. I don't think I'll be tackling any complicated lace patterns, but I can still do the basics. It's enough and it's very satisfying.

I also write. Oddly enough, I didn't really start writing until after I was diagnosed with Parkinson's. This blog began as articles I wrote simply to help me process this new direction my life had taken. I finally put them on the website because I wanted to make sure I wouldn't lose them if my computer crashed. I didn't really expect anyone to read them. Perhaps this made it more exciting to hear I made the top 15 Parkinson's blogs of 2017, chosen by Healthline. 

I've made the list for a number of years now, but I never expect it. I've run across some wonderful new blogs by people with Parkinson's disease and, if there is a year I am not chosen, I won't be the least bit offended. I won't call it quits, either. Writing seems to be in my DNA. My father wrote his first novel at age 85. Our son, John, is becoming well known for his poetry, and our daughter, Emma, has had two of her short plays chosen to be performed. I'll do my best to keep up.

And before I sign off, here's my new favorite Parkinson's blog:

Small Girl With Parkinson's by Meg Bernard

Oh, and if you haven't done it already, read Ed Sikov's article. 

Healthline

Parkinson's, Eating, and Cyborgs

It's amazing how much we do during the day without thinking about it. Actually, it's a good thing we don't have to think about everything we do every day. If we did, we wouldn't have time for anything else. We'd need an entire crew to manage everything.

Captain:  Body - Report.

Data:  Heart - Currently at 74 beats per minute. Adjusting for emotional fluctuations and exercise levels, we should see an average of 69.327 beats per minute over the next 24 hrs. Blood pressure holding steady at 104 over 62. Lungs - respiration in the normal range.

Worf: Weapon systems operational, but only when startled. There seems to be some electrical malfunction. The limbs aren't receiving the proper signals. This indicates a weakness. Captain, are you sure this body is worth maintaining?

Captain: For now, yes. As long as critical operations hold, it's the only body we have until the 27th century. We need to keep it running. LaForge, what about the climate control?

Geordi:  There's something going on with the heating system; too many fluctuations. I'll see if I can make some adjustments.

I thought I was up on all the crazy symptoms of Parkinson's. I know we have to actually THINK about things like blinking, swinging our arms while walking, not looking and sounding like we are drunk when our meds wear off. I never thought I'd have to think about swallowing. 

I've been feeling sorry for myself since my neurologist and speech therapist agreed that I cannot eat unless there is someone close by who can do the Heimlich maneuver. This is when I learned about one more thing I do without thinking about it: eat. No more grabbing a few toasted almonds when I go through the kitchen. No meals when I'm alone. Makes me grumpy.

Scotty:  She canna take any more, Captain. She's gonna blow!

Until I remember some of my fellow Never Give Up Warriors who go through Gastroparesis. This is when one's stomach becomes paralyzed. I would try and explain, but I'd rather let Meg tell you herself. Meg Bernard is "Small Girl with Parkinson's".

In honour of Feeding tube awareness week, I'm reposting the story of when I got my feeding tube. I have moved on in my journey and now eat intravenously 'with my heart'; but my GJ tube is still a huge part of my world as I use the J portion for medication and the G portion to drain my stomach (yes, it's as nasty as it sounds). My central line, my GJ tube and my DBS are my miracles...AND they qualify me for the elite status of "Cyborg". You can't beat that!

                 It’s my Tube-iversary ~ Memories

DECEMBER 5, 2015 / MEG BERNARD

~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

To read the entire article.... which you should... click here.

As much publicity Parkinson's has received because of celebrities such as Michael J Fox and Mohammed Ali, we still often get asked the question, "Parkinson's? That's the one where you shake, right?" Ah, if only that was all it did, most of us would say; not that shaking all the time is a walk in the park. I've been fortunate. While my biggest challenges are dystonic storms and choking, I can still eat and drink. Gastroparesis is one of those possibilities we don't hear about.  And Meg is an inspiration to all of us, even those of us who aren't Cyborgs... yet. It's all about being alive and ready to keep learning and discovering.

Captain: Now, do you have course and speed laid in?

Wesley:  Yes, sir, they are.

Captain: Very well, Mr. Crusher. Engage

  

Guest Blog - Parkinson's: The Bigger Picture

"Sara! Come sit down with me and listen to this song." Youtube is calling again and with a sigh, I try to find an excuse to get to the kitchen and help my mom with the dishes or take the dog out for yet another potty break. You see, my dad sits comfortably in his La-z-boy recliner for the majority of the day (which is hours on end), watching the endless classic rock videos taking him back to the normal life he once experienced and enjoyed...the life before Parkinson's set it.

All those around him are searching diligently to find some purpose of life for him as he slips into an isolated "coma" of the mind. My father is currently in stage 4 of the disease. Lucky for him, his grandchildren keep him on his toes with the occasional, "Grandpa, catch!", as a workout ball comes flying at him full force. Or, the newest fuzzy addition to the family jumps up on him licking his beard uncontrollably, scampering for all those yummy scraps from the previous meal. He definitely gets his fair share of attention whether he likes it or not!

By far, I have the most caring mother a person could ask for. She is selfless  in every way towards my father. I mean, who gets a whole bowl of seasonal fruit, scrambled eggs and homemade whole wheat bread for breakfast everyday! She cares for his every need and takes on the burden of a life that was handed to her unexpectedly. We all make plans for the future and have goals we wish to accomplish. My parents longed to serve a mission for our church and travel the world together but the cards just didn't deal that hand.

The road has been a long, burdensome one. My parents have gone through the headache of 5 different neurologist who all think he needs a different medication, all with different effects that go along with them from horrible tremors to hallucinations. You have non-stop physical therapy, frequent dentist appointments because eating and brushing become very difficult, applications for breathing treatments, in-house care and the list goes on. Bottom line, those who are in this boat know that the storm is tremendous!

Now what?... Well, we all have that gift of agency. We get to choose happiness or sorrow. We can choose to mope around all day feeling sorry for ourselves or do something about it! And that is just what our family chose, to do something about it! We all decided to have an outing, at least once a month, to take my father out of his comfort zone into the great outdoors. Now, he does get outside occasionally but this is an outing that would involve a longer period of time with much more activity than normal.

So, off we go! This is where the story gets interesting. Every drug that has been prescribed to my dear old dad cannot give him the joy and stimulation that the outdoors provides. Just this last weekend we spend the day in a regional park, listening to the birds sing, watching the squirrels chase each other and laughed as we raced around in a 4-seater pedal bike. My dad had the chance to laugh, heighten his senses and experience a piece of his life before it all changed. I have to say that the worst thing for a patient with Parkinson's is for them to sit around watching TV or stay inactive. Their speech slows down, mobility is more crippling, overall they become completely immobile. We will all be making a better effort to improve his quality of life through the God given beauties of the Earth.

I think everyone would agree that the quality of life is more important than life itself. As loved ones and family, we choose quality of life for my father. As we accept the change Parkinson's has brought into our lives, we can now focus on those things we CAN change to make the quality of life the best that is possibly can be. That's the bigger picture!

Thank you, Sara, for sharing your story with us! 

Breathing, Eating, and a little Good News

This has been a week full of good news (mostly) and small victories. It's been nice, especially since last week was a little too eventful and challenging.

Last week:

I woke up early last Thursday, picked Dad up and took him to his Dr's appt to check his ears, then took him home, rushed home myself, fixed myself a peanut butter and honey sandwich and proceeded to eat it quickly so I could get to the school in time to pick up our grandson. Chris would have willingly done this errand, but he was on strict NO DRIVING orders while we waited for his pharmacy to screw up his seizure meds prescription one more time.

I choked on the peanut butter. Really choked. I mean really really — can’t breathe gesturing to my husband and daughter to call 911 and my husband doing the Heimlich maneuver on me while shouting at our daughter – kind of choking. Our daughter called 911, but even I could hear the phone just ringing and ringing. Fortunately, the Heimlich worked (so far*, thankfully.. and obviously, it always has) and, as no one had picked up the call yet, she just hung up.

This meant my husband had to explain everything to the nice person who called us from the police station and we all had to explain to the two nice policemen who came to the house and quizzed us and obviously had expected to find domestic abuse going on. Fortunately we got all that out of the way and I still had time to go get our grandson.

THIS WEEK!

Something is shifting with Dad in the ear department because he can hear better than he has for a long time. I got Mom’s computer to connect to the Internet and figured out why it hadn’t been connecting, then helped her find an old friend. Then checked my email and found a message from our Medicaid consultant with the word HALLELUJAH! in the subject line. Mom and Dad are back on Medicaid as of February 1st! 

And I got a referral for a swallow study and therapy!

Okay, while this doesn’t sound like fun, and sitting together watching a video of “Breathing and Swallowing in Parkinson’s Disease”  (starring Roxann Diez-Gross, PhD, SLP-CCC) isn’t the most romantic way to spend an evening, I realize it’s all good for our relationship. As lovely as it is to have my husband come up behind me and throw his arms around me, it’s much nicer when he isn’t doing the Heimlich maneuver and I’m not choking and spewing bits of bread and peanut butter across the room.

Swallowing issues with Parkinson's and Dystonia are serious. If you have any of these symptoms, check in with your doc:

• Chronic coughing, especially during or after eating
• Increase in phlegm
• Food collecting around gum line
• Feeling like your food is getting stuck in your throat
• Having a lot of heartburn
• Sore throat/hoarseness 
• Frequent choking

Make sure your family learns how to do the Heimlich maneuver and you know how to do this on yourself. Talk with your family or close friends and go over the drill. If you choke, make sure you or someone else calls 911. Even if you can't speak, they'll know something is wrong and will send someone to check up on you. Don't hang up.

Watch the video, too. Dr. Diez-Gross has some wonderful information here and the tips she gives really, really help.

*this is the 6th time for me