Connections

Today we had the pleasure and honor of meeting with CEO of Kendall Jackson, Rick Tigner. You may have seen him on an episode of Undercover Boss. In the episode Rick revealed that his wife, Wendy, has Parkinson's Disease. Today, finding ourselves in Sonoma county, Roy called his office to see if it would be possible to meet with him. To our surprise, this busy man, took time out of his day to spend some time with us. Certainly an honor, but one of many instances throughout this journey where we have been honored to get to know several amazing people.

Take David Anthony of Gardiner, OR. Having gone through some severe damage to our trailer while in the northwestern storms, we found ourselves in this small town, population 248, in need of emergency bumper welding. It is evening, with a continued a stormy forecast ahead. We speak with a welder and make arrangements to meet the next morning.

Overlooking a gloomy coast, approximately 46 degrees out, cold and rainy with wind gusts of up to 40 miles an hour, David Anthony agrees to take on our repairs. Helping him to tarp the back of our trailer, that we had backed up close to his gate, David sets up two pieces of plywood as a bridge to lay on and to keep his welding gear out of the pools of water all around him as we go to find a laundry mat and wait for his call.

A call never comes as he is busy welding all day in these conditions, trying to finish and just never took a break to contact us. When we do drive back, David is dirty and tired and bearing bad news, he needs another day. Disgruntled but resolved, we spend a few more minutes chatting with him before running off to find a place for the night. In this time we discover that David is not just a welder but also an artist, hence the gallery next to the mechanic shop! More importantly we learn that both David's brother and brother-in-law have been diagnosed with Parkinson's.

With conditions even worse that next morning than the day prior, everyone sighs upon meeting up with the impossibility of the task at hand. Roy graciously stays to help this poor welding artist suffering to mend our trailer, that we can get on our way. By doing so, Roy got invited in to speak to David Anthony's family. Living in such a rural area, there are no available neurologists specializing in movement disorders nor any local support groups to help them in their struggles with PD. Roy got to help answer any questions they had about options available and offer them hope that their symptoms could be managed better. This was another honor.

Or Sherry and Jeff at the KOA Mt.St.Helens. Sherry was diagnosed with stage 4 pancreatic cancer and was awaiting an operation as she would not survive in her current state. She tells us we are inspiring as Roy and I are just standing there with our mouths agape at the inspiration exuding from this positively frail woman, who's brother just happened to have finished his own cross country bike ride - at 70!

The list goes on, even getting to know my brother, Dave, who deals with his own struggles of diabetes. Diagnosed at age 25 with type 1 diabetes and insulin dependent, it is amazing watching him just be so aware of his blood sugar levels around his food intake because his very life can depend on whether he eats or not. Oh, the things we take for granted!

Meeting people, and hearing who they are, helps you appreciate your own troubles. In Zulu the greeting, “Sawubona” means “I see you” and the response “Ngikhona” means “I am here”. It is an honor to be able to really see and be seen, as we are, with our struggles, with our hopes and dreams. We all share a similar story, getting to know one another and share makes the soul full. 

Starting to feel it

My body is sore today. It is different being sore in the cold rather than in the heat. I’m more used to a dull ache rather than these sharp pains that the cold provides by keeping the muscles cold and stiff. But we are working through it.

Roy has been a trooper. He has definitely biked further than he ever has before and yesterday seemed like a day entirely uphill. It’s funny in that we actually dropped 400ft in elevation but we must have climbed 1000ft first! We can both feel it today but I’m still looking forward to riding again today.

It is an amazing sense of freedom and joy to just be riding through the country. I have been up this way before having done a cross-country camping trip with my ex and our girls. However, we drove by car and some of the little joys we’ve seen in the last few days I’ve not had the chance to experience.

Picking fresh Washington apples off the trees growing alongside the highway. Seeing huge salmon stuck in a stream - I tried to get them but we had no way really without getting wet and it was just too cold! Good thing too, it’s a $500 fine to get caught with salmon without a license. Listening to the wildlife as we ride by.

I also am getting to experience all of this with my dogs. They haven’t been riding with us yet as we wanted to acclimate to the grueling physical torture but watching them run free in all the new nature has been exhilarating. They are pure happiness and joy and it is hard to have a hard heart when seeing them in all their wild beasty glory.

Which is good. Pain and uncomfortability will certainly bring out the grumpy in people and while Roy and I are both this sore we have a tendency to want to lash out. I’m doing my best to ignore the pain and keep the exhilaration going because, after all, this is an amazing trip. Getting away after a long ride for a moment to myself, with the dogs, out in nature certainly helps.

That and hot showers.

Missing posts

There's a couple of other posts I have done but they are on Roy's apple and I can't post from there.  With time I will stick them in...

If life was easy where would all the adventures be?

I love to cook. Some of my best dishes have come about by having my heart set on a certain something to eat to only to find I didn’t have the right ingredients. So, I had to come up with something that would still encompass the ingredients I did have. I am fortunate enough to be able to work well, even better, under pressure.

Life can be like that. You find yourself with a certain ideal of what you want but inevitably circumstances abound that take your best laid plans and they wreak havoc. We can either get mad, frustrated and shut down or take stock in what we do have to create something even better.

Ultimately, with perseverance, we come to see that what we thought we wanted turns out even better than we imagined. We learn to trust our ingenuity and instinct to overcome the obstacles we face, to overcome and succeed, as best we can.

Never be afraid because life doesn’t come easy. Every difficulty is an opportunity for us to feel our own strength. Learn to trust yourself and your ability to overcome. After all, it is those that can adapt to any situation that survive and prosper.

You can always have an ordinary planned meal, but sometimes you end up with something spectacular, beyond your expectation, that fills you with pride at what you produced because you were willing to step up and look beyond the restrictions set upon you.

May you appreciate your obstacles and grow with them. Enjoy the adventure. 

Like Minds

It has been my discovery that most people want to help. There is an innate need for people to do something good. Frequently, though, during the mundanity of our lives we get caught up in the minutia of daily living and are left feeling that there is nothing we can do. We are busy just trying to get through the day in order to get to bed and do it all over again the next day.

Unless a tragedy occurs: loss of a life; new diagnosis of an illness of themselves, or a loved one; a sudden accident, it’s finally pause enough to make one stop and think about what has true value in their life. Unfortunately, or fortunately depending on how you look at it, as we get older there are more and more people that have faced or are facing a trying circumstance.

This is what it took for us. My husband’s diagnosis of Parkinson’s disease made us have to reflect on what is truly important. We were so busy consuming, as is the custom in the U.S., placing worth in the things we could acquire, we didn’t fully appreciate those things of true value to us.

It is my opinion that this is the reason behind the need for anti-depressants, anti-anxiety medication, struggles with addiction, stress – we are lost in a capitalistic world where the things we idolize, the things we buy to fill us up, still leave us empty, questioning what we are living for. This leaves us disconnected, wandering lost with no since of purpose.

Maybe this is why the response we are getting is so overwhelming. Complete strangers going out of their way to offer kind words and help in any way they can. Through our mutual struggles we have made a connection. It is overwhelming, the amount of generosity we have encountered, because it has been so unexpected.

Living and struggling alone for so many years, caught up in our own lives, this sense of union, of everyone doing their part for a greater good is refreshing. Through Parkinson’s we have found our purpose and found people who share the need to do something, anything, to make sense of it all.

One of our greatest advocates has been Mark Burek from New York. Diagnosed 4 years ago, Mark has done his own cross-country treks and made many connections along the way. Selflessly, he has not only offered support and advice but has also gone out of his way to share those connections and promote our cause – one that we both share.

Medtronic, the company that makes the device(s) that made Roy’s DBS possible. We have never met such a genuinely caring company. In the OR throughout his surgery, they have gone out of their way to since to make sure he is doing well. Excited about or endeavor, they too, have networked to share contacts to ensure our ride is a success. This is a national company, the personal attention they have given us is above and beyond any normal interaction, especially in a society such as our own. We bought their product, we should be done. Instead we find ourselves with new friends, again working toward a common goal of helping others with Parkinson’s disease.

We have received support from people across the nation. An artist in LA, also diagnosed with PD, with whom we are collaborating with his artwork and inspirational quotes to offer encouragement to others through sage words and beauty. A doctor in Tucson, offering us their gym to have a large event, to speak and share hope with their members. A KOA owner in Washington state promising a bowl of hot stew as we pass through. Myriad notes of encouragement.

The list goes on and on and we find ourselves humbled.  This devastating disease has left us with purpose and offered a connection to others we never fully understood. It feels good to be able to help others and it feels good to receive help we never expected.

After many years of feeling misunderstood or alone, it is amazing this restored faith in humanity. It has been my discovery through PD that there are people who do just want to be good and help others. Although we have may have many years of struggles ahead of us, if we set out to be the best we can, to help others with their own diagnosis, there, in turn, will always be those that will turn around and help us.

Do not wait for a calamity to make that connection. Today there is someone less fortunate than you. By opening our minds to see what we can contribute to others, it allows that energy to be shared and you notice how many people are out there to help you. Like minds doing like things for a common purpose. Together we can make that difference.

A New Journey

Well, here I am apparently about to start a new journey. I’m not talking about our 4,500 mile cross country trek, rather everything that comes along with it. Since we have started I have been doing things that I always left for others; solicitation calls, bills, marketing myself (us), facebooking and now blogging. Although all the other things are essentially things I could always have done and just chose not to, this blogging is the scariest one.

For years I’ve known I should be a writer if only to let out all the clutter locked in my head. Some say I am even a pretty decent one (we’ll let you be the judge) but for whatever reason it has always been fear that has kept me from actually embracing this craft. Fear of what, I’m not sure exactly, but gut tells me it is fear to truly know myself.  

You see, I come from a pretty frightful childhood and although I pretend it is not so, deep down I have low-self esteem and feel unworthy. My children saved me in so many ways, gave me a purpose and I was finally good at something, but as they grew older they surpassed me on so many levels, that that bad feeling inside grew stronger. They are beautiful girls, strong, funny, smart and independent and I am very proud of them but every mistake I ever made with them eats me like a cancer. Now that they have grown and left the house I find myself wandering, lost and scared about who I am and where I go from here. Facing an uncertain future with my husband who has a debilitating neurological disease hasn’t helped.

It has been a struggle. Who am I now? That person, alone in my struggles I always felt I was? Or someone who has grown and now faces new troubles. Plighted to suffer forever, or someone who has conquered, and although reverted to those old fears on occasion, someone who is strong enough to take on these new challenges? Obviously, I prefer the latter (minus the struggles, of course) but strength has become the word I choose to focus on.

I am not religious but would consider myself spiritual. For ease of understanding, I use the term God – even though my inner self says “Universe”. For practical purposes I will use God and they say “God will not give you more than one can handle”.  If we take that for truth then I am prepared for this journey of Parkinson’s because to date I have dealt with a lot. Child abuse, alcoholism, homelessness, raising two girls, surgery, the list goes on.

However, life continues and it is a blessing. As I write this I realize I am not the only one that has ever faced challenges. Hell, my husband is the one with the degenerative neurological disease, not me. Putting things into perspective, as I choose to continue on, my only resort is to embrace the life I have now.

Embracing means I must write. I must write about my own past (to clear my own conscience – to focus) and I must write about what I (we) are doing NOW! There is a quote by Robert Holden “Sometimes in order to be happy in the present moment, you have to be willing to give up hope of a better past”. This is me in a nutshell. I always felt I was cheated in life, each and every new obstacle weighs on me heavily, but ultimately what I choose to do in the here and now is my choice.

I do not want to be a victim of circumstances, as I’m sure my husband doesn’t want to either, nor anyone else given the opportunity. That is why I am embracing this challenge TODAY.

I must blog in order to help reach people to support our cause. I must write to help people understand that they are not alone. We all face the same struggles – regardless of the details of which. I have the opportunity, NOW, to bow down and say “No, I can’t do this” or step up and face my fears to help others in their own struggle and know they are not alone.

Again, I choose the latter. If we separate in our oneness, we are, in fact, alone. Should we choose to branch out and realize we are not unique in our effort, we realize that we are one TOGETHER. I truly believe in my heart we can create a force for the greater good. Another expression (sorry) “Be the change you want to see in the world”. I believe this is my opportunity to be that change.

Truth be told, this is a scary journey. My children are now off on their own and my husband and I are left selling everything we own to do this 4,500 mile cross-country trek without knowledge of what we’ll do when we get back. It is daunting feeling. The positive side, we have already met so many inspiring and hopeful people, our options are limitless.

So, here I am on this new journey. In order for our ride to be successful I must override my innate fears. Bloggers are an entire community among their own. The more people I (we) can reach – by writing - the better chance of success at a positive outcome of our endeavor. Therefore, I humbly swallow my fears, try to overcome them so that I may write to keep up with the technology of today and promote our cause.

I respectfully request that you follow us. If you have tips, hints, ideas, recommendations please share them. Of course, we will always ask that you sponsor our endeavor with a donation – it must be done – at PDChallenge.com. In the meantime, I will conquer my fears and continue writing about my own journey as well as this ride that we’re on.

Peace be with you,

Lynn Roden

We went to pick up plastic for the windows of our duct tape camper top and got a flat :~( But AAA showed up and helped us change the tire. Def worth the service to keep!

Challenge is on

It's the day after Isaac and we are officially getting the ball a fantastic rolling. A new friend, Fulvio out of Spain made a fantastic trailer for our website. We got screen today and hope to have our camper top close to done by the end of the week. You'd be amazed at how strong duct tape can be!

Ahhh...my very first blog! Well, it's Thursday, August 23rd. Lynn is out exercising the dogs (in 94o heat) and I'm here at home trying to get our "ducks in a row".  The DBS unit has already considerably reduced my tremors, but just as Dr. Gallo warned me, the dyskinesia (erratic involuntary movement) has temporarily increased. That's okay though...this too shall pass!
 I think I'm going to start spinning classes today or tomorrow. I know I'm gonna be sore!

Roy Before Turn On