Parkinson's Disease and my cyclling...

[tiger]

Last Fall, after many months of increasingly intrusive symptoms, I was diagnosed with Parkinson's Disease. I'm 49 years old. Thankfully I have responded to medication, and am able to continue working for now. My cycling has been greatly affected, though, and it's clear that I will never again be able be more than a casual cyclist. Last week I went for a 24 mile bike ride - the furthest I've ridden in 9 months - and let me tell you it was exhilarating to be out on the bike again.

For many years my passion outside of work and family has been cycling. In retrospect I never really appreciated how fortunate I was to be physically able to cycle so much. It was my release in life. I'm embarrassed to say that I could have been more mindful of my good fortune when I was physically well.

By sharing all this, I hope I can influence a few people to focus on the joy of the bike during your next ride. Breathe the air, smell the scents, view the views, go hard up a hill and revel in your quads screaming and the peace it all brings. Realize that this is a gift.

I'm looking forward to some riding this year, with a modest goal of 1500 miles and making it around the lake once. A far cry from 5000 miles and 50 times around the lake just two years ago, but still much more than most middle-aged folks could even dream of doing, with or without Parkinson's.

(An aside: there's no way I "need" five bikes anymore...one or two will do. If you ride a 56-57 top tube and would like a great condition Spectrum Ti, Trek Madone SL, or Landshark drop me a line. I'll get them into the classifieds here eventually, but it may take me a while).

And many thanks to all of you on the Forum. Although I don't post much, I lurk almost daily, and I've learned so much from all of you.

Tiger

[Onno]

Thanks for sharing this. Yours is an eloquent and moving post, reminding us occasionally to live in the moment, and of the joy of cycling.

I wish you well, and many glorious miles on the bike.

[Bruce K]

Tiger;

Sorry to hear about your situation.

As you are probably aware, I am a big supporter of the Davis Phinney Foundation and its work to improve to quality of life for those in your situation.

I would strongly suggest that you and/or your family/caregiver/support people contact them about the various programs, and possible treatments that might help you to reduce the effects of Parkinsons and help you get back some of what you have lost.

Some of the programs are getting amazing results.

Good luck and feel free to PM me if you want the names and contacts of some folks who might be able to give you some insight into the road ahead.

BK

[mike p]

Tiger,
Thanks so much for sharing, and glad to hear your doing better. Your right we all take our health for granted till something happens. Thanks for reminding us to enjoy life. Keep up with the positive attitude, I'm praying for you.

Mike

[CNY rider]

Tiger-pal

I am sorry to hear your news but glad you shared it with us.
Hearing this from a cycling buddy really is like a slap upside the head, reminding me to focus on what is important in life.
I will be thinking of you, and your message, when I ride this afternoon, and hopefully on many more rides to come.
We shall Ramble together again!

[gasman]

Thanks you for the reminder to appreciate what we have and how it can be taken away so easily.

Best of luck to you and your family on your journey.

Our thoughts are with you.

[Spinner]

... and thanks for reminding us all about the joys of life that we all to frequently gloss over in our haste.

All the best to you Tiger.

[356a]

Tiger,

Thank you for sharing.

I wish you all the best, and with your attitude and perspective, you are a winner.

with our thoughts,

[RABikes2]

Along with Bruce, I have a soft spot in my heart for the Davis Phinney Foundation. They have been funding unbelievable work in research and various programs. Take Bruce up on his contacts. Your positive and upbeat attitude is a reminder of Davis ... you both are an inspiration to all.

Thank you for reminding us to appreciate and be thankful for what we have and are able to do.

You and your family are in my prayers.

Ritaann

[Smiley]

Best of luck Tiger, I wish you nothing but the best and hope for tomorrow. Thanks for putting it all in perspective.

[rwsaunders]

I just came home from a ride, showered and we're off to my daughter's art exhibition. I was checking the Forum (while waiting for my wife of course) and came across your post.

Your ability to share your thoughts here is special. I'll be thinking about your post and the joy that cycling does indeed bring us, as it is a great release from some of the challenges that life dishes out.

It looks like you're hitting your disease head-on which is the right attitude.

[Louis]

Tiger,

Thanks for sharing your moving story. It is interesting how often we fail to appreciate the good things we have when we have them. Perhaps that is one reason we keep moving forward, why we keep striving, but being content with your lot, enjoying your life as it is, "playing the cards you are dealt" as Sheldon Brown once wrote to me, is certainly just as good, if not better.

Glad you are able to continue cycling and able to enjoy it. It's an important part of our lives.

Take care,
Louis

[Minstrie]

Hi Tiger, thanks for posting. I've got a close friend with advanced Parkinsonism, he's got the brain electrodes and all.... He's not a cyclist, but does ok driving a car even at the extremes of spasticity/rigidity. Which made me think, trying to put myself in your place, what about a high end trike to prolong your ability to cycle? Just a thought. I hope you'll keep posting, and send me a PM anytime....
Minstrie

[Keith A]

I wanted to add my voice to those that have expressed appreciation to you for posting your story. We all too often take for granite the things that mean the most to us...our health, our families, cycling and even our lives...to name a few. Yet in reality, any of these things could be taken from us without warning. So it is posts like yours that helps me to remember to give thanks and to take full advantage of the blessings and opportunities that I have been given.

I wish you all the best as you move forward in life and hope that someday there might be a cure for this and many of the other diseases that can be debilitating or even deadly.

[konstantkarma]

Thanks Tiger, for putting things so eloquently into perspective. I will think of you and your courage while I ride.

Very recent research is showing promising results of exercise in slowing the progress of Parkinson's. Try to keep up a regular exercise routine.

Best wishes!

[Johny]

Tiger-pal,

It seems like yesterday when we rambled at dbrk's... Thanks for your message and inspiration. I'm glad you have responded to medication. We will keep you in our prayers.

John

[garysol1]

Hi Tiger,
Can you teach me a little about your disease please. What keeps you from riding farther than you do? Is it pain or is it fatigue or.....? Do feel like you have lost much bike control? Thanks so much and best of luck to you!!!

[Keith A]

Can you teach me a little about your disease please.I'm not Tiger, but this website (http://en.wikipedia.org/wiki/Parkinson%27s_disease) is a good place to start.

[garysol1]

I'm not Tiger, but this website (http://en.wikipedia.org/wiki/Parkinson%27s_disease) is a good place to start.

I am a bit more interested in how it effects cycling directly.....first hand from a cyclist. My mom has Parkinsons so I understand the basics of the disease and how it effects a senior who is basically un active physically but I would love to learn a bit more from an active person who is battling Parkinsons.

[RABikes2]

I am a bit more interested in how it effects cycling directly.....first hand from a cyclist. My mom has Parkinsons so I understand the basics of the disease and how it effects a senior who is basically un active physically but I would love to learn a bit more from an active person who is battling Parkinsons.

Please visit the DPF website.

http://davisphinneyfoundation.com

Ritaann

[johnnymossville]

Keep riding Tiger. I've ridden around that lake, not all the way though, a few times and it really is a beautiful part of the country. Stay in touch here also if you can.

John

[K5Cruiser]

Great story Tiger, and Thank you!

I'm just now getting back into cycling after an approximate 20 year hiatus. I'll be picking up my new to me (used) bike tomorrow morning. When I get on it and take my first ride, I'll think of your recommendations and be sure to take in all the sites, smells, and tactile stimulations that one receives when riding. :beer:

[tiger]

My sincere thanks to all of you who so kindly responded to this post and in private messages and email. You are indeed a wonderful lot.

Your support means a lot to me. It's especially uplifting to be remembered by some of you whom I met at the Ramble.

The pace of the progression of this disorder remains to define itself in me. It could quickly advance, or it could take 30 years. All I'm sure of is that I'm currently breathing and have a heartbeat. As long as that's the case, I will be riding a bike!

-- Tiger

[Bruce K]

Tiger;

Check your mailbox.

BK

[Len J]

Inspiring...thanks for the reminder.

Len

[tiger]

Well, a while has passed since my starting this thread. After fairly rapid progression of symptoms I left work on disability last September. I was unable to get out of bed or dress myself, and had tremendous on/off effect of medication. Recognizing there was about a 5% chance of dying or having a major stroke, but figuring that was actually preferable to what life had become, I had deep brain electrodes placed during a six hour [I]awake[I] neurosurgery in October. The stimulator was turned on in December, and it and the medications have been fine tuned over the past several months.

I'm happy to say I'm back on the bike. Not far (20 mile ride) and not fast, but the exhilaration is still there. 100 miles YTD! (used to do that in a day!). No, the DBS is not a cure, but for now the Tiger is back!

My daughter will be an Intern with the Davis Phinney Foundation this summer. I'm driving with with her to Boulder and will do the Victory Ride fundraiser June 3rd. Anyone who would like to donate please go to http://dpf.kintera.org/faf/r.asp?t=4&i=1008314&u=1008314-338639817&e=5535662983

Reading over my first post in this thread, I still feel every bike ride is a gift. I refuse to give up! In the words of one poet:

"This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world would not devote itself to making you happy."
--George Bernard Shaw

Regards, appreciation, and tailwinds,

Tiger

[vav]

Happy for you!!

[Louis]

Tiger, thanks for the update. It's good to hear that you are enjoying cycling again.

I have tons of respect for folks like you, who every day have the emotional strength and perseverance to overcome challenges so great many can barely imagine them.

I'm happy to say I'm back on the bike. Not far (20 mile ride) and not fast, but the exhilaration is still there. 100 miles YTD! (used to do that in a day!). No, the DBS is not a cure, but for now the Tiger is back!

[thwart]

Great! Glad to hear it.

And I won't take any time on the bike for granted...

[Viper]

My daughter will be an Intern with the Davis Phinney Foundation this summer. I'm driving with with her to Boulder and will do the Victory Ride fundraiser June 3rd. Anyone who would like to donate please go to

http://dpf.kintera.org/faf/r.asp?t=4&i=1008314&u=1008314-338639817&e=5535662983

"This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world would not devote itself to making you happy."
--George Bernard Shaw

Regards, appreciation, and tailwinds,

Tiger

Tiger,

Wow. I just saw this thread for the first time. Donated and subscribed to root for you. There are so many people who don't understanding it's not the meaning OF life, it's the meaning IN life. Be well and continue to be brave.

http://trainoutpain.blogspot.com/2011/11/parkinsons-disease-biking-and-awesome.html

[Peter B]

Tiger,

Thanks for the salient reminder to appreciate this and every moment. Health and fitness are gifts indeed. I lost my mother to Multiple Sclerosis and my step-mother to Parkinson's; I know all too well the struggles you face. Know that there are people wishing you strength and wellness.

A small donation is on the way.

Peter

[cycle_chic]

I've never met you, but from what you've written, I know this:

you are honest
you are strong
you are loved


Keep fighting.

Amanda

[Johny]

Tiger-pal,

Great to hear from you. Thank you so much for the inspiration. Enjoy the warm spring and ride with forever joy!

Best,

John

[benitosan1972]

Keep fighting Tiger, wishing you the best!

[Bruce K]

Tiger

I will be at R2V and so will Bradford (see events section).

I will probably be riding with Polly and Lauren from the DPF and possibly Davis so look for me and we'll share a few miles (maybe dinner if you're game).

Arriving Friday VERY late and trying to change plans so I can leave on Monday morning instead of Sunday night.

BK

[Fixed]

Sometimes we don't know how important something is till it is gone
Keep up the fight bro.
My dad had Parkinson's my brother n law has it too .

[soulspinner]

Thanks for geeting back to us. You inspire me to make my goals this year and get back in the shape I need to ride the Highlander well.:hello:

[majorpat]

Tiger,

I live on the other side of the lakes and would consider it an honor to ride with you if you are ever out this way, glad to hear that you are back on your bike again and rolling. And hey, you may think riding 20 miles isn't up to snuff but I can point out say, 300 million or so Americans who don't pack the gear to make it that far on two wheels. Seems to me, you're doing just fine!

Pat

[Bruce K]

Tony;

Congrats on becoming the largest fundraiser so far on R2V.:banana:

Now I have someone to chase !! ;)

BK

[tiger]

Tiger,

Thanks for the salient reminder to appreciate this and every moment. Health and fitness are gifts indeed. I lost my mother to Multiple Sclerosis and my step-mother to Parkinson's; I know all too well the struggles you face. Know that there are people wishing you strength and wellness.

A small donation is on the way.

Peter

Thank you! Tiger

[tiger]

Tiger

I will be at R2V and so will Bradford (see events section).

I will probably be riding with Polly and Lauren from the DPF and possibly Davis so look for me and we'll share a few miles (maybe dinner if you're game).

Arriving Friday VERY late and trying to change plans so I can leave on Monday morning instead of Sunday night.

BK

Bruce: We definitely need to email or skype. My daughter is working for Lauren this summer. We will arrive Thursday or Friday and I'll be there until at least Monday.

Tony

[tiger]

Tiger,

I live on the other side of the lakes and would consider it an honor to ride with you if you are ever out this way, glad to hear that you are back on your bike again and rolling. And hey, you may think riding 20 miles isn't up to snuff but I can point out say, 300 million or so Americans who don't pack the gear to make it that far on two wheels. Seems to me, you're doing just fine!

Pat
Pat: Last summer the ride that broke me was Skaneatles Lake. I had to stop half way around - meds just wore off and froze up. My daughter continued on and came back with the van to get me. When she is home this summer I am going to do Skaneatles with her - it would be great to have you join.

Tony

[tiger]

Tiger-pal,

Great to hear from you. Thank you so much for the inspiration. Enjoy the warm spring and ride with forever joy!

Best,

John

Johny-san,

Thanks for the encouragement!

Tony

[tiger]

Thanks for geeting back to us. You inspire me to make my goals this year and get back in the shape I need to ride the Highlander well.:hello:

I've done the Highlander several times - those are my backyard roads! I stopped doing it a few years ago when they seemed to be trying to make it harder and harder each year (it's already hard enough).

Tiger

[tiger]

I've never met you, but from what you've written, I know this:

you are honest
you are strong
you are loved


Keep fighting.

Amanda

Thanks Amanda! Those words mean a lot.

Tony

[tiger]

Tiger,

Wow. I just saw this thread for the first time. Donated and subscribed to root for you. There are so many people who don't understanding it's not the meaning OF life, it's the meaning IN life. Be well and continue to be brave.

http://trainoutpain.blogspot.com/2011/11/parkinsons-disease-biking-and-awesome.html

Thanks! I couldn't agree more. Too many people think life is about just passively showing up. I think it about embracing challenge and how you finish. At least that notion keeps me going. I am very fortunate.

Tony

[Viper]

Thanks! I couldn't agree more. Too many people think life is about just passively showing up. I think it about embracing challenge and how you finish. At least that notion keeps me going. I am very fortunate.

Tony

“First they ignore you, then they laugh at you, then they fight you, then you win.”
~Ghandi

You have won. I do not know the definition of winning when it comes to life. It's not about what one accomplishes, I think it's more about what they've learned and shared. I knew a girl once who told me life was about teaching and I argued it's about learning. Semantics, but a difference. We cannot teach (which is simply showing and hoping someone memorizes). We are here to share ideas, experiences, thoughts and we hope that others learn not through dictation or memorizing, but through having that ah-hah moment and getting it. Stories, story telling. Teaching is so 1950's...we are now Sharers. Modernday electronics do have some benefits, but still, it will always be the Story, the time we share talking which matters most. Sharing.

Everyone has something. We all have a strife, a challenge, some type of inner pain. I believe too many cyclists and runners and fitness freaks take it way too seriously while they avoid the factoid their cycling, running and fitness Facebook Updates are created by them, to hide their strife and inner pain. The fitness fanatic always existed...now we just get to read and see their unhealthy Narcissismbook and Twittercissm.

Then there is the athlete who has taken something away. The humanbeing who is handed a very real, significant challenge. Not some conjured up childhood drama from the dirt road they grew up on or a Facebook saga gone south, but a real deal. There's how many people out there drinking, drunk, pilled-up and making themselves numb? Then there are people who take pills for real medicine, so they can try to maintain their living, life. There's the Paris Hilton, Britney, Lindsey Lohan, Whitney Houston Generation, then there's Real Life.

A cyclist's inability to bike is no different than a librarian's loss of sight or a musician's loss of sound; we are given senses when we are born and we should all, like you, do our best to keep them, while we also stay true to ourselves with a level of morality which knows True North.

Parkinson's may ignore you, laugh at you, fight you. But you will win.

http://www.youtube.com/watch?v=-jpFaCYMaTo&feature=related

[Bruce K]

Tony;

Lauren is GREAT. Your daughter will love working with her.

No skype here but we can e-mail, PM, or cell phone.

Definitely need to connect. I am picking up a rental bike Saturday morning and am working on some sort of Saturday afternoon "tune-up" ride with Nicole Druse Duke from the Cannondale Cyclocrossworld.com pro team (she lives in Boulder) but we can plan some time around all that.

BK

[rwsaunders]

I had a couple of guys bag the ride this morning because of the high probability of rain and I almost did the same myself. I still set the alarm for 6:30 am and figured that I'd at least hit the trainer or treadmill early. When I ventured outside on the porch and it didn't "feel" too bad, I decided to eat breakfast and ride solo.

Cruising the overnight news on the iPad, I always check the Forum as well and I saw your post. I have to tell you my friend, you inspired me to ride this morning and for a long time to come. Tony the Tiger for sure!

[tiretrax]

I am glad that the implant surgery has had such great results for you, Tiger. It is a blessing for those suffering with Parkinsons. If I don't make it to Boulder and meet you, I hope you have a great ride.

[Bruce K]

Douglas

Don 't make us come kidnap you from TX:eek::help::banana:

BK

[soulspinner]

I've done the Highlander several times - those are my backyard roads! I stopped doing it a few years ago when they seemed to be trying to make it harder and harder each year (it's already hard enough).

Tiger

I live in Rochester on the east side. Its like 10,000 ft of climbing and 20 percent grades. Love to do the short one but my triathlete peeps want the old guy to suffer. If you are up to the 100k I could ask them to let me off the hook.

[tiretrax]

Douglas

Don 't make us come kidnap you from TX:eek::help::banana:

BK

I won't put up a fight!

You might have to come to Boy Scout camp in Oklahoma to find me (which will be 4 hours closer to Boulder). I'm still trying to work it out so I can miss the first day or two.