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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.

Filtering by Tag: advocacy

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.

 

 

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    

 

Parkinson's Central - New Smart Phone App is an Electronic Advocate

Terri Reinhart

Recently, I had to get a new cell phone as my phone company changed over from one something or other to a different something or other. The old phone wasn't smart enough for the new system. So now I have a newer old version of an Android phone. It's a little smarter.

This is good because there is a new Parkinson's Central smart phone app offered FREE by the National Parkinson's Foundation.  As soon as the LG P500 was up and working, I downloaded it and decided to check it out.

There is a lot on this app, from general information about Parkinson's disease and how it is diagnosed to treatment options, hints for making your doctor's visit more productive, news about current research, and a whole section about living well with PD.  There is a surprising amount of information there.  

Now, I will admit right away, I am not big on reading a lot of information on my cell phone. I'm over 50 and my eyes start to rebel.  If I am going to look for this type of information, I will look it up on the full screen computer.  Even there my eyes will tire quickly. However, I know for many people, cell phone apps are THE WAY to get their information. I highly recommend this app for those people with Parkinson's disease who use smart phones.

I didn't think I'd be using it, but then I saw...

There is a section on other health issues and PD (under Doctor Visits), specifically about dental visits. I didn't know levadopa and epinephrine together could cause an "exaggerated effect on blood pressure and heart rate".  Hmm, that could explain why I had such a violent reaction when the local anesthetic was accidentally injected into a vein in my mouth.  

I will cruise through more of the information on the app, even if it is on the phone. I suspect I'll find other gems of knowledge hidden in each section.  The nice part of having it on my phone is I can show it to my dentist or other health professional. It has more weight when it's coming from the National Parkinson's Foundation.

As patients, we have to learn how to stand up for ourselves. This can be challenging, especially when we are standing up to doctors and other health professionals. Our own doctors may understand us, but if other medical issues come up, it's much harder to explain. I know.  I tried this when I was in the hospital for a hysterectomy. No matter how much I tried to tell the nurse-in-charge that my sleep attack was not anything to worry about (I was in bed, not driving) and was, in fact, a side effect of my medication, she just pursed her lips and glared at me.  When my husband came, the nurse turned to him and said, "We had an incident this morning." I felt like a naughty child.

Now I have a helper right in my hand. The Parkinson's Central app is an electronic advocate.  Now they have to believe me.  See? It says so right on my phone.

So there.

 

 

Click on the photo to go to the National Parkinson's Foundation page about Parkinson's Central.

Click on the photo to go to the National Parkinson's Foundation page about Parkinson's Central.