Nan, congratulations!

You have inspired me to challenge myself today. It may not be trekking up a mountain…but I can boost my speed while walking on the trail this morning.

Jill

P.S. Update after the walk….well even though I challenged myself to walk faster, today was one of my SLOW days. But that is OK, the important thing is to just get out and move! Perhaps tomorrow I’ll be able to channel my inner power walker.

Here is a more complete version of our hike. I often forgot, or at least ignored, PD.

This past week we hiked the Inca Trail to Machu Picchu. We took four days covering about 27 miles and climbed to 13,800 feet. The trail is mostly a series of steps that go up-and-down up-and-down up-and-down. On the second day we went up to Dead Woman's Pass at 13,800 feet. On that day we had 4000 feet elevation gain and 2000 feet elevation loss after crossing the pass. I was afraid before we went that I would not be able to make it. But I trekked the whole way and carried my pack the entire time. When the going got tough, which it often did, I recalled my little two and a half year old granddaughter who would mutter her way through a difficult task, saying, "I can do this. I can do this." I would climb the next series of steps, repeating her mantra.

We slept in tents and used portable potties or facily-bushes or facily-trees or toilet-trees along the way. One of the unexpected best things was to have to go to the bathroom in the middle of the night and look up and see the incredible stars. Even though it was very cold, it was wonderful to know your cozy sleeping bag was waiting for you after taking several minutes to soak in the beautiful landscape and the overwhelming array of stars above.

We saw so many astonishing Incan sites and were so well guided by our local guides that by the time we got to Machu Picchu and had to contend with crowds, even though it was a marvelous place, it was almost anticlimactic after all the wonderful things we had already seen. On the last morning we rose before sunrise and climbed to the highest spot in the area. From there we had a 360° view of the Andean ranges and Incan ruins below. We stood in awe, drinking hot tea or coffee as we watched the sunrise reflected on the mountains around and the landscape below.

I was the oldest woman in the group at age 67 and the only one who had a neurodegenerative disease, the only one with any disease at all from what I could gather. The trip was put together through Yale Educational TraveI and Global Adrenaline, who did an absolutely first-rate job.

I credit my involvement with Pedaling for Parkinson's for being able to do this. My legs are unusually strong due to all the cycling that I do, even though my hands are not strong enough to hold my knife to cut my meat. It was comical to often lead the group up the mountain (I only led because I started off early!) and then be stuck at lunch or dinner because I couldn't manipulate my utensils. We had wonderful guides and an outstandingly positive group.

If anyone wants more information, please feel free to contact me at nan.little@comcast.net

Today I returned from a meeting at the YMCA where we were discussing the possibility of extending the PFP program around the country. When I got home this email waited me. I asked for permission before sharing it with you. If we ever doubt the importance of what we do....

Nan - i do hope this finds you well -

i am not sure if you remember me, we met at the chula vista conference in wisconsin in, i think, june - i was the guy who brought the bike and trainer for you to use -

i really do need to thank you - your presentation did a great deal to get me back on track and off the self pity boat - i had given up to be honest - the stiffness and pain, the awkwardness and the idea that i had had to give up so many things that i had previously so enjoyed had me to the point where i did not want to continue - this did go on another month during which i kept remembering your presentation and thinking just why is it things cannot be better - i did try to get back on the upright bike - rode a mile here and there - it was not great or comfortable -

i was at the time slowly decreasing the amount of mirapex i was taking with my doctors permission and supervision - in mid july to replace the mirapex my doctor had me double the amount of sinemet i was taking and to decrease the time between doses -

within 4 days the change was amazing - i had not felt this good in years - and remembering that presentation you gave - i tried again to get up and out -

as i write this - i am now riding between 150 and 200 miles per week, am feeling like i did 10 years ago while on the bike - comfortable - connected and getting stronger - this is like it used to be -

to be honest - i doubt i would have gotten back on if it were not for your presentation -

thank you so very much!

there is also something you might wish to know - lol - i didnt realize until i put the bike back on the car that the rear brake was rubbing on the rear wheel - so - it was not you - it was the equipment that was making it difficult to make your cadence -

thank you again

This may be my last post for a little while. We are headed out to Canada, first to go to Mount Tremblant for a few days of exploration, hopefully biking outside and rest and relaxation before heading off to Montréal for the World Parkinson's Congress. My life improved tremendously after I stopped taking the galantine August 29. Since I was a little shakier, my doctor prescribed another medicine with the warning that it had side effects as well. I took two pills and decided against it. Instead I got on my bike and rode just about every day. Even today, when the weather turned in Seattle and I started feeling a funk, I dragged my bottom out of the chair, put on my biking clothes and went in the basement for an hour of watching the Seahawks while putting energy in my bank. I am still constantly amazed at the reaction I have from biking. It is hard for me to keep the cadence now that I am nearly 68, but I find that maintaining an average at least in the very high 70s seems to do the trick. For this I am grateful.

I am quite excited at the number of contacts that I have had about Pedaling for Parkinson's. Just this week the YMCA in Bellingham Washington signed a license agreement and they are preparing to start the program as soon as possible. I had another request from San Francisco and yet another from Arizona. People talk to people and realize that they can make a difference in their lives without taking medication, but by taking dedication instead, dedication to change their lifestyle on a daily basis by including cycling in their daily regimen. I find that all of that helps charge my dopamine as well!

At the World Parkinson's Congress we're going to be asked what particular areas of research we think are important to pursue. Our answers will be given to young researchers who are seeking grants from the Parkinson's Disease Foundation. Here is your opportunity to speak up, because I will enter every single request that appears on this board. Please don't be shy.

I am 68 and have Parkinson's. When I was 58 without PD I booked a 15 day trip with G.A.P. which included the 3 day Machu Piccchu 27 mile 2 nite hike.
The Max # of people allowed came (12). Several porters carried the tents and food etc....they weighed about 130lbs each and carried all that stuff. The first nite we slept in the tents the 2nd nite we sleep on the floor of a building that had a screaming wild cat in it. The trails were the authentic inca trails sometimes 2 feet wide with a 2 mile drop off.
I asked the guide, who had done this trip for years, how old was the oldest to compete it...he said 62 and I was second oldest.
The reason I write is I have the greatest admiration for you. The trip was all I could handle at 58 and fit. That you did it at 67 with PD is unbelievable. Congradulations.
Dan Murphy
Rochester, NY

A key difference is that we trekked the 27 miles in 4 days, not three! The trails were the same though!

Interesting take on exercise here in Montreal at the World Parkinson's congress.

Yesterday we sat in on the Parkinson study group session on cognitive psychiatric conditions and Parkinson's. One man was speaking about the difficulties of doing a cycling study and actually claimed it would cost $12,000 per participant to execute such a study. My husband jumped up and told my story of doing exactly the same kind of study and it cost no dollars at all. There was much concern about the ability to collect data and I told them about a new product that is just being tested now with the Sarasota Pedaling for Parkinson's group. The monitor that sits on the front of the bike, either stationary or a road bike, will not only record all the heart and cadence and speed and whatever data, but will transmit it back to the doctor or the researcher who is in charge of that person. It should be available soon. The researchers were all very interested. One doctor asked if I would be willing to come and speak. Another sought me out later to tell me that I had inspired him to climb Mount Kilimanjaro or Annapurna base camp. You never know!

More later from the WPC.

I can't begin to keep up with news from the WPC. Hopefully I''l have time to go through my notes and write when I get home tomorrow n ight.

I have met several people from t his forum in person. What a thrill! THanks for stopping by the PDF booth to find me.

On the opening night one speaker talked about pronouns and how "I" is the most used pronoun of all, by far. He ended by asking what is the difference between Illness and Wellness? Illness begins with "I" and Wellness begins with "We". Of course, our current times are identified by the IPhone.... I feel well being here at the congress.

THe biggest problem here is that all the government people were sent home because of the shutdown. I met so many fabulous researchers who had so much to share. I had my list of people to contact and questions to ask and now they are all gone! It's so WRONG!!!

Pegleg and others have been working on a book for several years. Last night I saw a copy right off the press. I cried with gratitude for the work and quality, passion and love t hat went into making this book: The Peripatetic Pursuit of Parkinson Disease, an illustrated anthology of experiences. Order at: www.parkinsonscreativecollective.org

I took lots of notes at the WPC on many different subjects. These sessions were denoted in the program lineup with little beakers with varying levels of color in them that showed whether the session was highly scientific, somewhat scientific, or totally accessible to the nonscientist. I did not attend any of the sessions that had full beakers. So, briefly, here are my notes on various sessions I attended. please excuse any typing errors or any errors that make the information somewhat incomprehensible. I tried. Since I am not able to write, all my notes were made my little iTouch. I am posting the same information on the WPC thread.

Nonmotor symptoms:
They appear 15 to 20 years prior to motor symptoms
they are idiopathic
the causes are different for each patient
multiple factors lead to PD
understanding the causes is crucial to developing treatment
basic research is critical

Vary treatment for patients needs
patients must participate and advocate for selves
drug studies should be done with cohorts of patients with similar symptoms
there is no compelling reason for genetic testing at this point in time. Stay tuned. What will the information do for your and your family?

It is likely that idiopathic Parkinson's disease is not one disease. Therefore it is not likely that there is one biomarker.

Motor serum urate is a predictor of progression of Parkinson's. Inosine is a potential disease modifying therapy. It raises serum and CSF urate levels in early PD. It's generally safe, tolerable and effective in raising urate levels.

Non-motor symptoms:
sensation: loss of smell is a very early indicator; visual blurred contrast sensitivity that shows up particularly in reading is another early indicator
behavioral depression due to chemical changes
anxiety appears in 40%
apathy, less emotion, general indifference
dementia
executive dysfunction
sleep problems appear in 74 to 98%
REM disorder appears in 50%
pain shoulder, constant rigidity, stooped posture are all early indicators
fatigue
not all of the above are related to dopamine deficiency.

medical treatment varies on the phase of the disease. The Movement Disorder Society website has drugs and their uses

if you are concerned about dyskinesia, don't take sentiment as you will likely have more dyskinesia. (I wish I'd taken better notes in the session. I'm not sure I could explain that one.)

Patient engagement. It is difficult to extrapolate the experience of 30 to 300. The strongest indicator of success for PWP's is self-management and efficacy. The take away point is to be engaged in your own treatment.

Need for research: we need to know what drives the disease.
We don't have a good way to figure out what is going on with individual patients.
We need biomarkers, objective handles.
There are nonscientific roadblocks, such as participants in trials, regulation, funding, scientific cooperation.
The approach is fragmented.

More on nonmotor symptoms: smell, pain in the shoulder, fatigue in the mind. As well as being a motor disorder, PD is a neuropsychiatric disorder. There is evidence of extraniagral PD pathology.

tango studies show strong improvements over continuous period of time, with improvements continuing up to a month after stopping the tango. Generally these classes are one hour or one hour of twice a week.

Exercise in general: we know that it slows the disability;we don't know whether it changes the progression of the disability. Intensity varies per individual. Find a level and push beyond it. use a variety of exercises; strength, cardio, stretching, balance. Exercise a minimum of 150 minutes per week. What kind of exercise doesn't matter as much as the level. You need to sweat. Think of it on a continuum of 1 to 10 and put yourself at Level Seven. biking is easier than walking for Parkinson's patients. You can use a metronome to regulate walking. Try to speed up your exercises. Using a pedometer helps. Exercise when medications are working, not when you are stiff. People who expect good outcomes get them. Take charge of yourself: self-efficacy. Experience success.

This is difficult to write. After holding steady at 4 mg of a dopamine agonist (first ReQuip XL and then Neupro) for several years, my tremor and rigidity worsened to the extent that I had to increase the Neupro to 6 mg. I realize that's still very little medication, but I was so hopeful (unrealistically hopeful) that the disease progression would be slowed almost to a standstill. Feeling much more energetic with the new dose, I even went for a 20 mile ride on my bike this week to celebrate my 68th birthday. My shoulder locked up on the uphill way home and I am back to square one with the shoulder pain. This is nothing compared with what many PD patients experience, so I'm not complaining, just reporting. My shoulder doesn't lock when I'm on the stationary bike because I don't pull on it going uphill. It may be that I am now restricted to either flat paths or the stationary bike. Still not so bad all things considered. I saw a pain doctor the same afternoon that I took the ride and he prescribed Meloxicam. I hate taking more meds, but I hate the pain even more. There you have it. Not giving in!