How Far Would You Go to Raise Awareness for Parkinson’s Disease? The Roden Story

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You may have heard of them… Roy and Lynn Roden? PD CHALLENGE? 4,700 miles across the U.S. of A.? On a bike?

It began November of 2012. The reason? To raise awareness for Parkinsons’s disease. A progressive, degenerative disease that affects 1 in 100 over the age of 60, but is increasingly becoming more prevalent in those under the age of 50. The bike ride that ended in 2013 of March, was only the beginning of the journey that Roy and Lynn would take for bringing awareness to Parkinson’s disease and encouraging those who struggle daily with this disease. This is their story, as told to us here at Parkinson’s Journey.

A passion for fiitness. Recently married. A love for life. But something wasn’t right. At the age of 49, Roy and his new bride found out why…

 

Noticing a twitch in his thumb, like so many others in his shoes, Roy didn’t think much of it. After all, he had consulted his doctors about it on occasion. However, as it got grew worse, so did his concern. He sought a definitive diagnosis and was routed to several neurologists where a diagnosis of Thoracic Outlet Syndrome (TOS) was made. TOS is a group of disorders that occur when the blood vessels or nerves in the space between your collarbone and your first rib (thoracic outlet) become compressed. This can cause pain in your shoulders and neck and numbness in your fingers. 

Roy was recommended to have a very painful surgery where they remove the upper rib and shave off part of the clavicle. Finalizing plans for the surgery at the doctor’s office, a nurse practitioner waited until the GP was out of the room and recommended Roy first see a neurologist specializing in movement disorders. Her father-in-law had Parkinson’s disease and she recognized the symptoms Roy was having with those familiar of PD. After scheduling an appointment and going through a preliminary baseline test, he was told to come back in a month where the same test was once again repeated and he was finally given the diagnosis of Parkinson’s disease in January, 2009. He had just turned 50 and he and Lynn had just been married a year.
 
 
While Roy was relieved to finally have a name to put to his affliction, the newlyweds would just begin the journey of ups and downs, trying to distinguishing the man from the disease. Now that he had a diagnosis, however, he could do something about it and, in less than six months post diagnosis, Roy began organizing his first Parkinson’s disease fundraiser.
 
Roy handled the diagnosis well. At first.
 
Lynn took the news of his diagnosis relatively well. At first.
 
But for those who know Parkinson’s disease all too well, we know it doesn’t just sit and look pretty. It is a progressive disease and manifests itself in its recipient in any way, shape, or form it chooses, at any time it chooses, and at whatever speed it chooses. 
 
It took several years before Lynn would eventuallly begin to doubt whether she could handle having this little monster around that had invaded her husband and her marriage. The side effects from the 30-some pills Roy was ingesting daily were beginning to affect his cognitive thinking and create side effects that he was having to learn to deal with besides the disease itself.
 
Roy’s symptoms were getting worse and he knew that mentally, he was slipping. He didn’t want to go out in public. He would never eat in front of anyone – not even Lynn. He was depressed and began becoming reclusive. His wife’s concerns about him became an added burden. 
 
And then one day, Roy and Lynn sat down and looked at all the medications he was currently taking to treat this disease (those 30-some pills) and written on the label of each and every one it stated, “May cause drowsiness or confusion”. It is hard to distinguish between the disease and the side effects of medications when consuming that amount. 
 
Roy was still holding fundraisers as he did when first diagnosed, but wasn’t very active in the Parkinson’s community because he didn’t want to know what other problems he might end up with. He realized that he was beginning to struggle with his own diagnosis.
 
About ten months after Roy’s diagnosis in 2009, he had gone to CLRI, the Clinical Learning Research Institute. It was a busy place and while there, Roy inquired of a gentleman who happened to be there as to why he was there. 
 
Was a speaker? He told Roy no. 
 
Was he a clinician? No. 
 
A doctor? No. 
 
So Roy asked him why he was there and the gentleman responded that he, like Roy, had PD as well. Roy was somewhat baffled, as this man had none of the symptoms that he or the others there with Parkinson’s had and then the man explained he had had Deep Brain Stimulation (DBS) in October of 2009. 
 
In the meantime after that encounter with the man at CLRI, Roy had continued on with various research studies and the standard medications prescribed by his neurologist. Toward the end of 2011, as his symptoms progressed and he was taking more and more medications and as his cognitive issues continued to progress, he asked his doctor if he would be a good candidate for deep brain stimulation, to which he replied yes, Roy would be a good candidate. After going through all of the psych and other necessary medical testing required, Roy had the surgery in July of 2012.
 
 
The surgery itself was done in two parts. First, the bilateral probes were placed in his head and he was released the next day to go home. Roy says this procedure wasn’t painful except for where they placed the halo (a frame that holds the head still) and he didn’t even take an aspirin. The next part was to place the ‘generator’ in his chest and that was done a week after his first surgery. This one was slightly more painful, but he was out the same day and still took no analgesics. Three weeks later they activated the stimulator.
 
Roy is now down to about 4 pills a day. His symptoms are being managed better than ever before and his cognitive function has returned to normal. About a month after his original surgery some people from Medtronic (the company that makes the implant) took he and his wife out to dinner to see how he was doing. The answer was obvious. He was doing better than ever.  He was eating in public for the first time in about a year and not only that, but he was eating with chopsticks. Medtronic has since made him an ambassador for their company and Roy stays busy making himself available to anyone who has questions about the surgery. He says that deep brain stimulation may not be for everyone but he highly recommends it as an option for treatment for those who are suffering with Parkinson’s disease. 
 
In giving Roy (and Lynn) their lives back to as close to normal as possible (through DBS), they now had a brighter future ahead of them. So, Roy posed the question of what one was supposed to do after having brain surgery and out of that lighter look at the life before them, they began looking at their lives with a new perspective. 
 
Lynn’s kids had just graduated high school and traveled to Brazil so they were also empty nesters. Quantity no longer meant anything for the couple and the whole cycle of living to work to buy things no longer appealed to them. They were searching more for a quality of life versus the quantity in life and so their new journey began. 
 
They decided on a cross-country bicycle trip because Roy was now capable of accomplishing what was impossible just a few short months prior and they both agreed it would give them the opportunity to really be together and see the country.
Along their journey from Seattle, Washington to Southern Florida, they had the opportunity to meet many others battling with the Little Monster, as well as educate others about the disease. They had the occasion to meet a reclusive man in a little town in Oregon who had been diagnosed with PD and sent home. Roy says that this man was not even made aware that there were medications available to help with his symptoms. Roy and Lynn were able to put him in touch with people in his area and he is now getting out of the house and doing much better. 

They also met a CEO of a large corporation who’s wife had Parkinson’s and who had undergone unnecessary shoulder surgery and were able to answer their questions about DBS. Another encounter was meeting a man in Arizona who had Parkinson’s and his main symptom was freezing. It might take him 20 minutes to get to his bike that was a few dozen feet away, “but once he was on his bike – woosh! watch out – he’d be 8 miles down the road,” they said. They also went on to say that, “We attended the Davis Phinney Victory Summit where we met so many positive people – most struggling with a YOPD [Young Onset Parkinson’s Disease, age 50 and under] diagnosis. We spoke at universities and at many PD support groups along the route. Most importantly, we were able to reach out to the media and help spread awareness about Parkinson’s disease. We met many angels along the way and shared some amazing stories and experiences. We set out to find ourselves and in turn found our place in the Parkinson’s community.”
 
 

 
 
 
 
 
 
 
 
 

 

 

 

If You’ve Got It, Why Not Flaunt It?

Day 28 of Parkinson’s Disease Awareness Month continues…

The question was posed on a Parkinson’s disease discussion board: “I was wondering if craving sweets is an unusual symptom of Parkinson’s Disease. I am still trying to get acquainted with the ever transforming symptoms of the problem.”

The following replies were posted:

  • “I just got back from the store with a gallon of ice cream, a package of Pepperidge Farm Milano cookies, a chocolate pie and 3 bottles of Magic Shell… so I would have to say yes to your question.”
  • “Let’s see– 3 bags of chocolate covered raisins, a big dark chocolate bar, chocolate ice cream, and chocolate covered donuts…”

The honest to goodness truth of the matter is, Parkinson’s disease takes a lot from a person. It takes your independence, for one. It takes the spring in your step for another and leaves you with an awkward shuffle instead. It takes the swing in your arm and leaves it stiff and motionless. It takes your smile and replaces it with a ‘stone face’ instead. PD, while agreeably, takes away your ability to smell bad things, also takes away your ability to smell most everything else. Good-bye cow dung. Good-bye sweet, fragrant lilacs.

However, while it can and often does take away your sense of taste, it in turn can leave you with a greater sweet tooth.

Now, one could choose to crumble against such losses and complain to those who will stop to listen, but you’ve gotta admit,– this is a priceless gift, however expensive such a luxury may end up costing.

Who could ever imagine such an extraordinary blessing? We don’t need excuses or reasons stretched far and wide, stuffed with lies in order to engage in such a once formidable past time such as sitting by the pool side and eating decadent See’s Candies milk chocolate covered Bordeux’s, sprinkled with chocolate jimmies, washed down smoothly with an iced-cold glass of sweet tea. We need no excuse! We have Parkinson’s disease. And I say, if you’ve got it, flaunt it. Take advantage of each and every blessing it affords you. You’ve gotta start somewhere. My suggestion?

Start with the chocolate. It is one of the four food groups, after all. Right?

Parkinson’s Prose

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Day 27 of Parkinson’s Awareness Month continues with
 
“A Parkie’s Prose”

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I have this muscle in my body

More like two or more makes three

I tell them to do this or not to do that

But they no longer listen to me.

***

They have control of most everything

they move me all over the place

doing strange things I don’t want them to,

like taking control of my face.

***

I drool when I don’t even know it,

And it’s quite an embarrassment to me

I flail about and fret within

and wish that I could just be set free.

***

Instead it seems to get worse and not better

I stumble when I just want to walk

I take too long checking out at the store

And I slur my words when I want to talk.

***

My writing’s getting worse every day

It’s getting smaller and harder to read

There’s no reason to tell you all this stuff

except that I’m trying to plant a small seed.

***

You see, people really aren’t aware of the consequences

from having this chronic disease

but there’s so much more than shaking around

So – I’ll enlighten you now, if you please.

***

Tremors are the most well known symptom

Then perhaps walking rather awkwardly

Some call the walk the Parkinson’s shuffle

Because we kind of look like a penguin, you see.

***

This disease knows no boundaries

And it plays no favor-its

It picks and chooses its victims

And leaves them defenseless, bit by bit.

***

It takes a little of our independence each day

Takes our voice, sense of smell, and our smile

It takes our self-worth, our confidence, our sense of pride

And leaves us feeling quite useless after a while.

***

It makes us feel stiff, depressed, weary and tired

Not just from the disease, but the medicines, too

For the pills may help this symptom or they may help that one

But we could really use something better, something new.

***

Between having tremors and finding it difficult to swallow,

Losing our balance and feeling like we’re just a burden as well,

When we’re stiff we find it hard to stand up straight and tall,

We deal with pain –oh, there’s so much more I could tell.

***

But the purpose is not to seek pity

or make others fear this disease and back away

But to make you aware of the burden we share

And the hope through a cure soon some day.

***

You see, it’s only in telling others what we deal with

The symptoms, the medications and all of the rest

That people can begin to see that it’s more than just shaking

That puts our patience and caregivers to the test.

***

And so together we will stand united

As we battle and wage war for a cure

We’ll stand tall, hold to hope, keep the faith, won’t back down

The cure is coming, of that we are sure.

*****

by sherri woodbridge

Friday’s Funnies

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Day 28 of Parkinson’s Disease Awareness Month continues…

 

Having been serious for too many days now over PD, we are taking a much needed break. These Friday funnies are brought to you for the sole purpose of laughing.

Because sometimes in life, you just have to…


For more funnies, visit here.

 

 

Apathy in Parkinson’s Disease

Day 26 – Parkinson’s Disease Awareness Month continues…

I posted an infographic the other day about Parkinson’s disease. It didn’t have the non-motor symptoms listed on it and it was brought to my attention. For a list of non-motor symptoms, check this out. For today, I am going to focus on one non-motor symptom: apathy

Just what does apathy mean? Some say that the opposite of hate isn’t love, but apathy – an attitude of not caring. Miriam Webster defines it as showing little or no feeling or emotion. Spiritless. There’s little or no intereste or concern. You feel 

  • indifferent
  • complacent
  • disinterested
  • unconcerned
You are
  • lukewarm
  • aloof 
  • cold 
  • numb
  • unemootional
  • detached
  • unfeeling
  • insensitive
  • unattentive

Ever feel that way? I highlighted the word spiritless above, because I think that sums up the whole mess. 

Apathy can be pretty pathetic and discouraging when you come across it in someone. Most people who are apathetic cause you to feel frustrated by their seemingly sense of detachment and unfeeling attitude toward life. However, in a person wwith Parkinson’s disease, often beknownest to them what is truly happening, they don’t want to feel this way. They don’t want to feel numb, lifeless, spiritless

Some tend to believe that apathy and depression are one of the same. According to the Journal of Neuropsychiatry, “Apathy is defined as diminished motivation not attributable to decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death.” In a study conducted several years ago, doctors concluded that in Parkinson’s disease, apathy is present, but depression is more consistent with the disease. So do we ignore the sometimes and shoot for the consistent? No. It all needs to be addressed. So where do you start?

I have struggled with both aspects of these two specific non-motor symptoms. Apathy has robbed me of time. Opportunities. So has depression. Whereas apathy has left me feeling unemotional and numb, depression has left me in darkness, despair and desperation. When they have coincided with one another, it has felt like a ticking time bomb in my head and spirit. It is a scarey place to be and it is real.

For me, part of thee apathetic feeling I had came from feeling like I didn’t know what to do next. Feeling stuck in those ‘off’ moments. Keeping a list of things I want to accomplish or need to accomplish, no matter how simple or mundane it may seem, helps to bring things back into focus. Here are some practical suggestions for those moments when you feel bound in the land of apathy (and they help for depression mode, too):

  • Get up, take a shower, get dressed. Don’t think about it. Don’t allow yourself to get distracted. Do it. Laying out your clothes the night before may sound childish, but who cares? It makes your life easier.
  • Get some exercise. Stretch. Walk. Go for a swim. If you can’t motivate yourself, ask someone to help you/keep you accountable. To pull you out of the house if they must, and drag you along until you’re going along because you now see just how good you feel.
  • Take your medications on time. This involves sorting them ahead of time and having them ready to pop in your mouth when you are taking a handful each time. When you’re feeling apathetic or depressed, it is easy to just forget it becasuse unscrewing five child-proof prescription bottle caps four times a day isn’t something you’re going to feel like doing and you’ll pay for it within the hour. 
  • When you have things you really shouldn’t put off, do the things you hate first. That will make accomplishing your goals easier.
  • Talk to a friend. Have someone pray with you and/or for you. Having another person to share life’s struggles makes the struggle bearable.
  • Talk to your doctor. There are treatments for apathy and depression for people with Parkinson’s disease who find themselves fighting to stay sane. This disease already takes enough from us. Don’t let it have your joy and happiness, too.

 

 

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