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hiker

newly diagnosed outdoor active female

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hiker    2

I am a 54 yr old very healthy female diagnosed in Jan. 2017. My main symptoms are reduced fine motor in left hand (typing is hard), left arm swing, stiffness in shoulders/neck, and left foot feels awkward (lags?) when walking on flat surfaces like a sidewalk. I have to really focus to keep my feet in rhythm. The faster I walk the easier it is.

Running is easier than walking. When I hike on hilly or mountain trails I am fine and symptom free...no lag. 

I also have very subtle slurring of certain words when tired or stressed. Voice projection is normal.

I am super active - bike to work 24 miles round trip weekdays, strenuous hiking on weekends, plus do 45 minutes 80-90 rpms on stationary bike 3x week. And I do the Boston College parkinsons stretching and strengthening program. 

What do I need to do to keep my symptoms minimal enough that I can continue doing what I love - biking, hiking, backpacking, xc skiing? Is high intensity better than moderate intensity?

How does this disease progress? Will I still be able to hike in Spain in 5 years or should I go now?

How do I know when to start on medications? And what medications are best for what symptoms?

I want to stay active for a long time. 

Thanks!

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LAD    202

First take a breath....

Being active and exercising is GREAT! Keep doing what you love to do. You can add neuroplasticity into your routine...say colors of things you see, do math facts, say names that begin with each letter of the alphabet... look up some others...

I have taken the seize the day attitude in terms of travels and life in general. You have PD ...it doesn't have you. 

Welcome to the forum! 

Keep moving!

just thought of something.... look up pole walking exercises for PD on YouTube ... you can do lots with hiking poles! 

 

 

LAD

Edited by LAD

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Lonnise    60

Welcome Hiker to the club no one "wanted" to join; but now that we've been involuntarily inducted we're glad it exists.

Since exercise is the only "treatment" proven to slow the progression of PD, you are clearly on the right path to keeping it in "slow motion" (no pun intended).  Keep up all the activities you currently enjoy and as LAD wisely points out add in neuroplasticity activities and maybe even some speech strengthening work - I've read that singing is excellent, however I clearly could only do this in the shower when no one else was home  - I cannot generate music as much as I appreciate it :P.

As you will find from the wonderful contributors on this forum, oxymoronically, we are all the same in that our journeys are all unique.  The progression of your PD may indeed follow parts of "common paths" as listed in all the literature you can find (I think the pamphlets that NPF will be happy to mail you are a good start if you haven't already read them), but no one will be able to tell you on exactly what course your PD will progress.

As far as starting medications, these only treat symptoms.  There are some Neurologists that still feel Rasagiline (brand name - Azliect) may have some neuroprotection qualities - but that's not been scientifically proven and starting it is a personal decision only you can make.  There are as many folks that are "for" it as "against" it - which is true with most approved medications.  "One size fits one" is how I look at it.

Moreover, with any plan of action (including inaction) you will best know what works for you by how your symptoms respond, pay attention to the non-motor symptoms as well; however you may not have realized these were PD related (if they in fact are) - that's what DH (my dear husband) and I found. Try to find an MDS that will help you craft a path of action that serves your purpose.  Beware, finding and getting in to see an MDS will probably take months (took us 7 months and now we're having to find another which is also taking months, but we try to remind ourselves of the adage - patience [and persistence] is a virtue.  Mind you, I always said "if I wanted to have [patients], I would have been a doctor" - works better orally than in writing - :rolleyes:).  There is a serious scarcity of MDS specialists compared to the increasing number of humans diagnosed with movement disorders, nonetheless having this specialist as one of your trusted advisors is worth the work & wait.

As I have quoted in other posts, I am a huge fan of Atul Gawande's book Being Mortal.  I encourage you to ask and answer the following questions in your ever-evolving journey with how you manage PD as part of your new reality.

Quote

From Atul Gawande’s Being Mortal, Metropolitan Books, Henry Holt and Company, LLC 2014

Epilogue, pg 259

[The job of medicine] is to enable well-being.  And well-being is about the reasons one wishes to be alive.  Those reasons matter not just at the end of life, or when debility comes, but all along the way.  Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:
What is your understanding of the situation and its potential outcomes?
What are your fears and what are your hopes?
What are the trade-offs you are willing to make and not willing to make?
And what is the course of action that best serves this understanding?
 

Lastly, as far as when to go hiking in Spain, my "advice" is do it as soon AND as often as you want to and can.  Why not go now AND in 5 years?  I assure you the hike will be different each time but not because of PD, because it's something you want to do and will appreciate forever.  Doing the things that fill our lives with joyful purpose and appreciating all the things in life we can seems to me to be a wise philosophy by which to live.  Again, as LAD wisely stated, you have PD it doesn't have you.

Best of luck with your continued journey, I look forward to sharing with you.

LHG
 

 

Edited by Lonnise
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ShopGuy    87

Hi Hiker,

Rates of progression vary widely. I'm starting my fourth year post-diagnosis, and have noticed very little (if any) decline in physical abilities. My MDS considers my progression very slow. Having said that, I was dx'd quite early, with just a few mild symptoms I probably could have ignored

Like you, I'm active outdoors (hiking, backpacking, skiing, etc). I also have a job that keeps me physically active. Some of my symptoms are similar to yours--Neupro (a dopamine agonist) restored arm swing, and got rid of that draggy foot feeling, but also caused frequent nausea and afternoon sleepiness. These are mild side effects relative to what some experience with agonists, but still annoying. I haven't decided yet if I'll start taking it again, when the clinical trial I'm in concludes this October.

As others have said, exercise is a great way to try to slow progression. You might want to keep an eye on Phase 3 trials of isradipine and inosine--two promising approaches for slowing progression that will be available immediately for that purpose if trials are successful.

PD dx can be a shock, but also an incentive to focus on the present, and quit putting off plans for some future time (a future that may not happen, with or without PD). Last spring, my wife and I climbed our first Cascade volcano.  Summer included multiple backpacking trips. Last fall, we went to Iceland for two weeks of hiking (including glacier hiking) and sightseeing--a trip we'd talked about for years. I did a three day mountaineering course on Mt. Rainier, which I'd like to repeat this coming spring under more challenging conditions.

Based on my experience so far, and barring significant advances in treatment, I expect to keep doing this kind of stuff for another 5-10 years. Granted, pre-dx, I wouldn't have contemplated giving up intensive outdoor activity at 55 or 60 years old, and granted, being fortunate enough to have slowly progressing PD is not as fortunate as not having PD at all. But things are as they are.

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hiker    2

Thanks all! David I am thrilled to see that you are still so active. Gives me hope that I have years of hiking and biking left. We are headed up to NH for some hiking next week and then a week on the Appalachian trail and thereabouts in Virginia in October. Hopefully the Pyrenees next summer!

So how do I follow the Phase 3 trials of isradipine and inosine? Where will it be posted?

Sue

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ShopGuy    87

Years ago, a friend and I spent two weeks hiking a stretch of the AT along the Blue Ridge--ended at Buena Vista, VA if I remember right. Beautiful country, but I don't miss the heat and humidity, or the overloaded pack I was carrying.

Started doing the ultralight backpacking thing a few years before PD dx. Getting pack weight down was a big help even w/o PD--I expect more benefits as things progress. Sleeping on the ground isn't as easy as it used to be, but a thick insulated air mattress helps.

The Pyrenees sound fantastic--my wife and I are hoping for Finland sometime in the near future, and I'd also love to go back to Iceland for an extended stay in the East Fjords. And this summer/fall may finally be the year we climb Mt. Adams (WA State), instead of just talking about it...

My MDS is one of the study doctors for the inosine trial: https://clinicaltrials.gov/ct2/show/NCT02642393. Trial uses the dietary supplement inosine to raise blood rate levels. Urate within a certain range is associated w/ slower progression. My urate levels are already too high to qualify for that study (a good thing, I'm told). My understanding is, using inosine needs to be carefully monitored, as urate levels that go too high can cause gout. 

I was taking isradipine off-label until recently (see signature) and will resume in October. Had already started dopaminergic meds, so didn't qualify for that trial: https://clinicaltrials.gov/ct2/show/NCT02168842  Off-label isradipine use was with MDS guidance and consent. I've had no noticeable side effects, but others have (mostly mild edema).

Searching for SURE-PD III (inosine trial) or STEADY-PD (isradipine trial) should be a good way to keep up to date.

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MusicMan    769

If you want to go to Spain, I would go soon, maybe next year. Afterwards, plan your next "bucket list adventure" and tick it off as soon as possible. You may be fine for 10 years, or you may progress rapidly, there's NO telling. And despite anyone's advice and suggestions, nothing can be guaranteed to slow YOUR  individual progression..... be it exercise, medication, or therapies.

I'm doing pretty good for 3 years in, but I'm not kidding myself. I'm traveling and having fun while I can. I set a goal for a myself, "just hang on until you get thru this vacation", then when that's done, I set my next goal. Right now my goal is to stay in good shape until next February for my daughter's wedding. I'm walking her down the aisle, of course, as well as writing, playing, and singing a song for her at the reception. But I only look ahead for one year at most, plan out the year, and when it's done I start planning again.

But that's just me.

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AmyM    1

Hi Hiker,

Your description of yourself sounds almost exactly like me. It's been 2.5 years since diagnosis, and in that time I've been able to continue working, exercising, and taking active vacations with my family - since diagnosis, I've biked and hiked in Italy, Austria, Canada, and Spain, and finished a half marathon in Yosemite. (Although I still have trouble walking the three mile round trip to work every day.) I actually find that traveling makes my symptoms better. A big inspiration for me was a Seattle professor who I met at the World Parkinson Congress last September in Portland, OR - ten or so years after diagnosis, she hiked Machu Picchu and then Mount Kilimanjaro! She did a video for the Congress and I watch it sometimes when I need a little reminder. You can find on their website, I believe.

And saying I like a lot, from Jon Kabat Zinn's Full Catastrophe Living, on challenging health conditions: "There's more right with you than wrong with you. See it as the adventure of a lifetime."

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Gardener    193

Hello Hiker,

I was 55 when dx and had always been healthy and very active but slowed considerably before diagnosis.  I don't have tremor so my main symptoms were rigidity, slowness and pain.  I started levodopa within my first year and it helped me become active again but not to the extent that I was before symptoms.  Six years from dx I'm doing well but experiencing wearing off and when I try to exercise or do physical labor my medication wears off in 2-3 hours.  Otherwise, I get about 4 hours per dose.  When I'm well controlled on medication, I feel better  than I did in the couple of years leading up to the diagnosis.  I believe that my progression has been slow and for that I'm very grateful. 

I hope that you can continue to do all the things you have been doing but don't feel that it is a "failure" to start medication.  It may help you to continue your present lifestyle for many more years.  I've been lucky so far in that I don't have any side effects from levodopa except for very minor feet wiggling some evenings.   

Good luck and keep us posted.

Gardener

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hiker    2

Thanks everyone - love the positive encouragement and insights. I am living life for today, with my sights on tomorrow too!

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LAD    202
On 7/31/2017 at 10:21 PM, hiker said:

Thanks everyone - love the positive encouragement and insights. I am living life for today, with my sights on tomorrow too!

Nice!  I sent you a message/email. hope you were able to get it. 

 

LAD

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waruna01    44

I,would try to,stay with herbs such as Ashwaghnda and mucuna and delay PD meds as long as possible. Also be sure to exercise daily. Vit d is,good,to

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Linda Garren    736
On 7/31/2017 at 11:16 AM, MusicMan said:

If you want to go to Spain, I would go soon, maybe next year. Afterwards, plan your next "bucket list adventure" and tick it off as soon as possible. You may be fine for 10 years, or you may progress rapidly, there's NO telling. And despite anyone's advice and suggestions, nothing can be guaranteed to slow YOUR  individual progression..... be it exercise, medication, or therapies.

I'm doing pretty good for 3 years in, but I'm not kidding myself. I'm traveling and having fun while I can. I set a goal for a myself, "just hang on until you get thru this vacation", then when that's done, I set my next goal. Right now my goal is to stay in good shape until next February for my daughter's wedding. I'm walking her down the aisle, of course, as well as writing, playing, and singing a song for her at the reception. But I only look ahead for one year at most, plan out the year, and when it's done I start planning again.

But that's just me.

Hi, MM.  I hope you'll share the video of your singing at your daughter's wedding!  Would love to hear it.

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