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    • #16893
      Jean Mellano
      Participant

      I often wonder if the athletic life I led prior to diagnosis has impacted what symptoms I have now and/or helping me to progress slower. I used to weight train 2-3x/week, cardio (cycling, spinning, heavy bag classes,race walking) 3-5x/week plus, I used to dance and trained like a professional 15-20 hours per week for over 20 years.

      Did you exercise/train a lot prior to PD? If so, do you think that was a factor in severity of your symptoms or disease progression?

       

    • #17159
      Bob Hodgson
      Participant

      I was extremely active pre-diagnosis and have tried to remain so after I was diagnosed in June 2014. I have found that muscle memory has been beneficial in continuing to exercise. For example, I found that it was easier to run/jog then to walk. Consequently I am running 3-4 days per week and on non running days I either walk or use an elliptical machine. This exercise routine has significantly slowed down the progression of the disease for me. In fact this year I have had an improvement in my symptoms such that I get comments all the time from friends and family that they notice an improvement.

      The only activity that I no longer do is surfing and snowboarding. My hope is that someday I maybe able to do those activities again.

    • #17161
      Jean Mellano
      Participant

      bob, i think muscle memory has helped me also.  with PD’s lack of motivation symptom, i dont know how people who never exercised pre diagnosis can exercise to help their symptoms/slow progression.  i find i need to go on autopilot to do my workouts, else they wont get done.

    • #17167
      Andrew L.
      Participant

      BOB YOU ARE AM INSPIRATION! I played tennis and went to the gym (worked out with weights and on various aerobic machines) most of my adult life. Since the advent of the “fit bit” , rarely have a day with less than 10K steps going back many years. Sometimes looking back I think I might have had this disease for years or even a decade or longer, based on various symptoms I had for years. If I am correct then exercise has really slowed it down. Now only time I actually feel close to completely normal is when I exercise while dopamine is kicking in on a day after I slept at least 5 hours the night before (unfortunately not a given). I probably average a solid 4 hours of varied exercise per day. Outwardly people do not know I have PD (balance actually has improved with my training, since started dopamine no gross outward tremor). My belief is exercise is medicine.

    • #17168
      Jean Mellano
      Participant

      Andrew, Exercise is indeed medicine.  One thing about being an athlete prior to pd diagnosis,I think it makes us more in tune with our bodies and we notice our symptoms more.  My neuro says I was high level in the past and now I am closer to normal and I shouldn’t set the bar so high.  LOL

    • #17169
      Andrew L.
      Participant

      I like that Jean. Normal is good. :)Plus we are getting older, so maybe it is not all Parkinson’s if we slow down a bit.

    • #17172
      Michael R. Scott
      Participant

      Good Morning Kids,

      I began really training when I decided at 16 that rather than let the Army Draft me, I was going to follow my Cousin (who had taught me to rock climb and made me a better skier) into Special Forces, U.S. Army (Airborne). I joined a gym and began training to make and exceed the SF/PT test. A year later with the SF/PT requirements in my back pocket, I volunteered and passed that Pre-Induction test.

      There is a saying that by the time they let you go, you were about “as lean and mean” as you were ever going to be.. I’ve since found out that most of us, decided to stay close to what I called “the line in the sand”. And, accordingly, I found myself back in that same gym and from then until now, I’ve maintained a MWF routine of basically the “Nose to Toes” routines  that I began following in 1962 at 16.

      Rather than the training, I believe what brought on my Parkinson’s were the many Concussions and Exposures to Hazardous Materials that I got during Active Duty, National Guard SF and the dangerous professions that I was involved in from age16 to 51 (when I retired (thank God for the GI Bill for College))and some of the same injuries that occurred after I retired. I am now 74 and was diagnosed at 70.

      Something that the rest of you might want to know. I live in the West and I have moved all of my care to a local University Medical Program. I am there because I know that they are the “Tip of the Spear” when it comes to new medical advances and studies. Relative to their studies, I was recently asked to join a Federal Research Program because they have noticed that my Progression (despite my many more injuries than normal) is the slowest out of some roughly 2,000 patients that they see with Parkinson’s. Their observations are that those that are the most fit, have the slowest  levels of progression. And they want to try to figure what it is that I am doing that is slowing down my progression…. Is it the Core Training, The Weight Training or the Cardiovascular Training, or is it ALL of those together?…

      I’m beginning to believe that, because of these preliminary findings, more and more previously inactive Parkinson’s patients are going be begin doing some sort of PT  that increases their fitness levels in an effort to slow the Parkinson’s progression.

      Mike S

       

    • #17175
      Joe Ferguson
      Participant

      I was a two-letter athlete every year in school. Then was a full time army ROTC cadet in college academy (Va Tech), then nine years in the army including airborne school. I was always in good running shape. About age 35 I started having serious episodic progressive trouble with my back every couple years. I live on an old fashioned farm and did all that hands on, strenuous, he man work without benefit of much modern machinery, and loved the challenge, “I can do/lift it!” I thus let go of deliberate, non-chore type exercise for years until I had my corrective back surgery in Jan 2018, then during recovery in May I was dx with PD. I had planned to get in shape anyway after my back repair, but then PD dx really got me going, to survive at all! I’ve faithfully been doing my power walking for an hour three times per week since then. Retired early at 57 last month and am getting back into weight training too. I’m thankful I know how to train and learned the self discipline early in life though it was always a team thing back then. Now, out in rural America I’m on my own to exercise, but feel I have the background to make myself persevere and not quit. So far my physical symptoms are not bad but the ED and MCI and other subtle things are progressing that o can perceive inside. I hope to delay the wolf at the door. My kids are still in public school.

    • #17189
      Skip Shaputnic
      Participant

      I’d like to think I’m still a bit of an athlete, or at least a committed exercise fiend, though I don’t quite have the ‘go for it’ attitude that I once did when younger. My primary care physician delights in reviewing the results of my annual physical exams as the numbers remain very good, so I’ve at least got that going for me.

      Going on 8 years since tremor symptoms started I’m happy to report continued stabilization and little, if any, disease progression (my neurologist told me during September’s appointment that progression appears to be flat). My take on this is that it is at least partially due to my lifelong devotion to exercise as it appears to be a key factor for a favorable prognosis (I sure hope so!). I’m still getting several hours of cardio each week, which is even more important now, and overall feel much healthier than not despite living with PD and another chronic condition. I feel blessed that I can keep on keeping on with my favorite activity—mountain biking—and hope that I can continue riding with confidence for many years to come and avoid what I call ‘premature dismounts’ though I don’t bomb down the hills like I used to. I believe that my lifelong commitment to exercise may have actually delayed disease onset until my early 60s.

    • #17196
      Jean Mellano
      Participant

      Andrew, yes, one of our challenges is trying to determine if a symptom is age related or if it is due to PD.  Personally, I like to blame PD LOL

       

      Mike, More and more I am beginning to think if we were athletes prior to diagnosis, our progression will be slower.  A good friend of mine is an Airborne veteran; he started a triathlon team to help veterans dealing with PTSD and depression.  http://www.airbornetriteam.org/.  Thank you for your service.

      Joe, thank you for your service. I too, feel like I have the background to make myself persevere and not quit.  Like you,  I hope to delay the wolf at the door by continuing to push myself to exercise.

       

      Skip, your story is a testament to the importance of exercise. I hope you continue to see positive results.

    • #17209
      Jo Elmblad
      Participant

      Classification as an “athlete” might be too optimistic,  but I was consistently active before Parkinson’s diagnosis and I believe that has really helped me continue to be able to do most of the things I used to do.  I bowl, go to Jazzercise class 3 times a week, walk, and do  a number of active things.  Am able to physically do more than the typical woman my age(74) plus live in a two story home which requires multiple trips up and down stairs.

    • #17210
      Stanley Yip Moy
      Participant

      Yes, this forum is very helpful & inspiring. We all need motivation and reminders to keep going, and this says we’re not alone on this epic journey(marathon, not sprint).

      Thank you Jean, and all others.

    • #17214
      Jeffery Hill
      Participant

      I was a reasonably committed athlete from high school through my 40’s (running, x-country skiing, weight training etc).  Unfortunately I allowed work to become my priority in my later years, and slowly gained weight and lost my conditioning.  My PD diagnosis shocked me into action.  Work stress was completely incompatible with PD, and the literature on the “exercise as medicine” was intriguing.  Something had to give, so I decided to retire at 60 and throw myself hard into exercise.  I now work out 2 hours a day, 5 days a week.  I tell my friends it’s like going back to school, where the only course is Phys-ed.  I’m having a blast and feeling better.

    • #17216
      Bob Hodgson
      Participant

      What impresses me the most is the results from regular exercise of which you have all have experienced, the slowing down or even reversing the symptoms from PD. That’s incredible! Keep up the good work!

    • #17224
      Glenn M.
      Participant

      I think I might also fit the profile for this thread – ie had a pre-PD history of doing much strenuous excercise and  am currently exercising to help  slow the progression of symptoms.  I was on the cross country team for 4 years in high school (1960 – 1964), plus a physical fitness team that competed in a state-wide Marine Corps contest for high schoolers. We had the same coach for both teams – he worked us really hard. (A bit late but … Thank you Coach Murray!). I didn’t do any athletics after HS until I started recreational running (5 and 10K races) in my fifties and sixties. I was diagnosed with PD in February 2019 at age 73. I have some of the usual symptoms (tremor in one hand, voice fade-out, distorted handwriting) but they are early stage, quite mild. So far PD doesn’t interfere with my life style. The only “medicine” I take is an excercise cocktail which I developed based on my physical therapist’s recommendations and reading about the benefits of exercise for “slowing down the progression”. It includes a mix of  distance running, walking, stretching, weight machines and Tai Chi. My program is to do one or two elements for about 1-2 hours  each day, 5 days a week. At the time of my diagnosis I had a lot of stiffness in my back and torso. This went away gradually. The only sign of disease “progression” I have noticed since February is a slight increase in the tremor in my hand.  I just saw my neurologist for my semi-annual follow-up. He wants me to take medication but I feel like I don’t need to  – at least for the time being…

      In summary, based on the experience of the participants in this thread, it seems there might be a correlation between a person’s pre-PD exercise regimen and delayed onset and/or slower progression of PD. Thanks to everyone above for sharing and helping to shine a light on this important topic!

       

    • #17225
      Jean Mellano
      Participant

      Thank you all for your feedback.    I really do believe based on what I have seen in this post, that a consistent exercise lifestyle (pre-diagnosis) and a continued focus on exercise (after diagnosis) goes a long way in staving off or slowing down progression.  My biggest challenges are fatigue, lack of motivation and apathy ( used to love working out; now it is a chore for me).   Luckily, I still can go on ‘auto pilot’ to get to the gym but, the fatigue prevents me from exercising more intensely or for longer duration.

    • #17232
      Alan Ascher
      Participant

      I was an athlete and continue to be..I play pick up basketball with other basketball enthusiasts.  We literally stop the game for me to take my 9:30 AM Sinemet pill….and muscle memory in basketball appears to carry over into PD treatment.   Plus it’s fun !

    • #17304
      Richard Perlmutter
      Participant

      I was very active before diagnosis in 2012 and have remained so. I ride a road bike 80-100 miles per week. I also lift weights 2-3 times per week. Finally, I ski, kayak and hike regularly. I think all of the above, especially cycling, has helped me to stay static (of course I take L/C). I remain hopeful.

    • #17305
      Jean Mellano
      Participant

      Richard, Alan

      Thanks for your input.  More and  more, I am becoming convinced that a consistent exercise lifestyle prior to diagnosis is key to helping lessen symptoms and slow progression.

    • #17331
      Carolyn Huggett
      Participant

      I have recently been diagnosed with Parkinson’s and have been an athlete all my life. With my husband I have competed around the world in Ballroom Dancing and we have won many trophies. That has stopped now due to PD but we are continuing to dance and have taken up Argentine Tango. Dancing 3 or 4 nights a week, teaching Tai Chi and Qigong 5 days a week and walking my dog daily is helping me keep the symptoms down to a minimum. I have also found that knitting in the evenings while watching TV helps too.

    • #17340
      Michael R. Scott
      Participant

      Skip,

      I just read our note about Mtn biking and wanted to share my experience with the group… I have several injuries to my hips and legs that probably goes back to my SF Airborne days, Ski Patrol, etc. That said, in the past I both backpacked and Mtn Biked about equal. But since my Parkinson’s diagnosis, I’ve found that hiking was getting more and more exhausting. That said, I’ve found that now I can Mtn Bike for much longer dustances than I can comfortably walk. So the Summer hikes and Backpacks have given way to Mtn biking as my main Summer Cardiovascular exercise…. If some of you other members are finding it harder to walk longer distances as I have, might I suggest you try getting on a Mtn Bike, aye?… 🙂

      Mike Scott

    • #17346

      My husband never participated in any formal sports or forms of exercising.  He was a firefighter, then Captain, for 34 years and there is some controversy about why they have Parkinson’s at the rate of 10x the average.  Since being diagnosed in May 2019, we discovered Rock Steady Boxing which was designed specifically for Parkinson’s patients.  They have a website which great info.  There are  chapters all across N. America and we were lucky enough to find one about half an hour from us.  He also had his knee replaced in June and we are discovering that this program is also helping this recovery and his flexibility.  I would highly recommend anyone viewing this post to investigate this.  There are about 30 members where he goes and some have had great responses.  I think the major goal is to stop the progression and, in some case, actually reverse some of the symptoms.

    • #17347
      Michael R. Scott
      Participant

      Mary,

      I am also a retired Captain Firefighter/Paramedic from a major city who retired after 29 years at age 51. I was diagnosed at 70 and now am 74. There are about 10 of us from our Fire Department that have been diagnosed with Parkinson’s and  two things that we all have in common are Concussions and Hazmat Exposures. Because of our annual Combat Challenge Tests, most of us were in pretty good shape when we retired and most of us have stayed that way. There seems to be a component of physical fitness that seems to slow down the progression of Parkinson’s. Currently there are physical fitness studies being done around the country under Federal Grants to try to figure out what it is about physical fitness that is slowing the progression of Parkinson’s. Also, there a lot of physically fit people on this site who’s progression of Parkinson’s is also very slow.

      Michael S

    • #17348

      Wow Michael – thanks for sharing about your background etc.  My husband is badge 62 on the Dept. which now has well in excess of 300 firefighters.  He is therefore one of the most senior members and will be 73 next week.  He retired at age 60 as it was mandatory at that time.  So far, he is the only one diagnosed with Parkinson’s.  He spent a number of years of the Rescue Truck attending to highway accidents etc.  as well as a couple of very large fires that likely emitted toxic fumes and, even though they wore breathing gear, I think it is possibly for exposed skin to absorb chemicals.  Also, we lived, for 29 years, between two golf courses where there was regular spraying of chemicals and now they are saying that they feel Parkinson’s can be cause by these toxins.  Obviously, we are all more concerned as to how to slow the progression.    You sound like you are right on top of it and we are glad to have discovered this forum.  We look forward to further conversations in the future.  BTW, John was physically assessed by the Fitness Trainer (who has specific training in Rock Steady Boxing) when he started a couple of months ago.  He will be re-assessed in six months just prior to his follow-up appointment with his Neurologist.  So far she has not recommended any medications and we are hoping to put this off for as long as possible.  His tremor is sporadic and only affects his left hand at this point.

       

    • #17353
      Kim Mortson
      Participant

      I was diagnosed with PD at the age of 57.  I am a personal trainer and had been a runner for almost 20 years.  Unfortunately, one of the 1st PD symptoms that I experienced was my left foot stiffening and then turning over on it’s side when I ran.  I have had to give up my running however I still weight train 2x week, do a “HITT” workout 1x week, take yoga 1x week and walk when I can.  I also downhill ski in the winter and waterski in the summer.  I truly believe that my PD symptoms are under control due the regular exercise.  My neurologist is very pleased with how slow my symptoms are progressing.  One thing that I will comment on is the effects of stress on my PD.  Stress definitely makes things worse.  I have had to make some changes to my training business so I experience less stress in my life.

    • #17378

      It is amazing to see how differently this illness surfaces and progresses with each individual.  Thank you for your advice re stress.  This is something we will control the best way we can.  Having joined Rock Steady Boxing has been the best thing for my hubby – he is a social person to begin with but no one understands better than those afflicted by the same disease.  The exercise component has been excellent – I think we are on the right path for sure.  Attitude is everything with this problem and, the more one can surround themselves with words of encouragement, the better it is.  Parkinson’s will not control us, we will control it.

       

    • #18363
      ann marie Brick
      Participant

      Skip & Michael:  I started mountain biking 3 years ago when we lived in Leadville, Co.  We moved to Arizona 2 years ago close to McDowell Mountain with 250 miles of trails!  I was diagnosed last month with PD (age 71) but haven’t been able to meet with my new neurologist at Mayo, because of the Covid virus.  Consequently, I’m not on any medication.  (yet?)  Do you think my frequent mountain bike rides (16-24 miles) can delay the need for medication?  I mean, have you been able to have reduced dosages of the meds because of your biking?

    • #18374
      Glenn M.
      Participant

      Hi Anne Marie:

      I am a PD runner, but running and biking  have the same effect, i.e. high intensity excercise might help “slow the progression”. In my case, I was diagnosed with PD  13 months ago at age 73.  My neurologist, who is in a PD Center of Excellence, recommended I start medication (Sinemet) right away, even though my motor control symptoms were slight – a minor tremor in one hand. His reasoning was that I would “feel better” on a medication regimen. I actually felt “ok” at the time – other than learning I had PD. So I decided, with all due respect, not to follow the doctor’s advice, due to my concerns about known medication side effects. I’ve had two follow-up visits since then. He continues to recommend medication, but he respects that it’s my decision not to take anything until I feel like it will help.  I continue to avoid medication. I follow my excercise regimen and continue to have no motor control issues other than a slightly more frequent hand tremor.  More importantly, I feel fine (for 74).

      Effectiveness of excercise against PD is definitely correlated with the “intensity level” as measured by heart rate. One reported Phase II clinical trial with treadmill exercise found that the group running 4 times a week at 80-85% of maximum  heart rate had a significant improvement in motor scores compared to the group running at 60-65%. (The study can be downloaded for free from JAMA Neurology website – just Google “Schenkman high intensity treadmill exercise”.

      Here is some related medication overview advice   – it is copied from the Davis Phinney Foundation PD guidebook “Every Victory Counts” (which can be downloaded from their website for free):

      “Initially, Parkinson’s symptoms may be mild and not interfere with daily routines. Choosing when to start medication for Parkinson’s varies from person to person. A general rule of thumb is to start medication when the Parkinson’s symptoms become restricting or disruptive in some way. In addition, if you are starting to make accommodations or are giving up activities you’ve previously enjoyed, it’s time to consider medication.”

      So,  I’m just another new patient – that’s my take on “excercise vs. medication” so far. I wish you the best, especially many more years of mountain biking, and  hope you are able to get an appointment to have that discussion with your neurologist before too long.

    • #18375
      ann marie Brick
      Participant

      To Glenn M.: Thanks so much for taking the time to respond to my question. I really appreciate the references to the research studies because I learned that the intensity of the exercise is very important as well. I do not need medication at this point so I will focus on the exercise!

    • #18376

      We, too, believe that one of the best therapies is exercise and keeping active.  My hubby had his knee replaced last June – less than a month after his Parkinson’s diagnosis.  This surgery turned out well – but there will always be certain limitations.  After having joined Rock Steady Boxing in December, once the knee was healed, he has found it to be of tremendous benefit (including even more flexibility in the knee).  He not only benefits from the exercise component but also the social component.  All those who attend are goal driven and willing to fight.  He has had two appointments with the Neurologist and neither of those times did she push medications.  We are coming up to a yearly appointment in June and are expecting that she will stay in this holding pattern.  The only change from a year ago is a tendency for the left-hand tremor to increase somewhat.  We feel the benefits of staying off medication, for now, outweigh the potential side effects of medication.  Good luck everyone – keep on pushing forward!

    • #18377
      ann marie Brick
      Participant

      This info is very heartening! I know medications are inevitable, but the side effects scare me more than the symptoms I have now. Thx for your comments

    • #18400
      Michael R. Scott
      Participant

      Dear Ann Marie,

      This is Mike Scott. Sorry I haven’t responded to your questions sooner. In my opinion, your body will tell you when you need to begin your medications… Most of my biking took place at around 8,000-9,500 ft in the Wasatch Mountains close to the Alta Ski Resort, which is very similar to your altitudes around Leadville in the Rockies… At those altitudes, you know well how much your body is tested…. Your move to the mtns in Arizona where you will be riding at lower altitudes should give you more time in my opinion… I actually had a few falls when my tremors got to the point where I could not stay on trail during an outbreak. Also, my ability to do fine motor skills completely stopped  during my outbreaks. The only thing that the Carbo/Lebo stopped where the tremors. I did not notice any change in my cardio output or muscle strength. Sometimes when we are training at a high level we  can tend to get a little “bullheaded” about needing the medication… For me it only took a couple falls in really bad places to pound it into my head that unless I began the medications I was going to end up with a traumatic injury that would end my biking days or at worst, kill me!… 🙁

      Relative to Arizona, I have found that my ability  to ride hard in high temperatures has dropped considerably, so you would do well to plan your Summer rides in the early morning. The only hazards I have found to early morning rides is that the deer, elk and moose are also more active in the morning. Nothing like coming nose to nose with a 300 lb moose when you are going fast downhill. You’d be surprised at how many more pretty sites you see when you are going slower plus colliding with a moose can have very negative effects on your body and your future!….. 🙁

      I hope I have covered your questions. Feel free to ask if you have more for me. You might find it interesting to know that the 10th Mountain Division began in those mountains around Leadville in WW-ll. While they were expected to be effective in the Scandinavia, their greatest Claim to Fame was the (what was thought to be impossible) climb of the shear face of Mt Belvederer in Central Italy. The Germans had put huge cannons on the top and that had stopped the Northern Push of the Allied Forces in Italy… They made that climb in two nights, (bivouacking in the daylight on a small shelf about half way up) and assaulted and captured that garrison in the early morning when most of the Germans were still in bed! I believe that is still harolleded as on of the greatest climbing assaults in Military History!

      Mike Scott

       

       

    • #18399
      Skip Shaputnic
      Participant

      Hi Ann Marie,

      Although I like to theorize that lifelong commitment to exercise may delay disease onset, in my case until my early 60s, it may be more of a hunch than reality. But, since exercise is beneficial (read: vital) for PD it makes sense. If you have to deal with PD at least developing it later in life is much better than earlier onset. All I know is maintaining an active lifestyle has, and continues, to pay dividends in so many ways–mostly helping me to feel good, fit and healthy (despite having PD!). I feel about as energetic as I ever have. My neuro told me a couple of years ago that carbidopa-levodopa does not improve balance issues, but exercise certainly does. That’s reason enough to maintain a regular exercise regime and it’s probably more important now than ever. I feel blessed to be able to continue riding, that’s for sure.

      Whether vigorous exercise can replace Sinemet to minimize motor symptoms is unknown to me. I’d say it’s possible but it would be on an individual level and the severity of symptoms, as well as one’s ability to tolerate symptoms. For me, symptoms started about 8 years ago with left foot tremors. The tremors stopped when in bed and were more of an annoyance than a real problem so I didn’t seek medical help, thinking I had an essential tremor or something.

      That changed 3 years ago when tremors spread to lower left arm and hand and did NOT subside at night. It became a 24/7 reality. As any of us can attest, it’s very difficult to sleep while part of the anatomy is moving. It became apparent to me, and in a hurry, that I needed medical attention. Sinemet was subsequently prescribed and I was immensely grateful as it provided much-needed tremor relief. Uninterrupted sleep was possible again, and I have not been bothered by tremors since.

      However, in late February I changed from Sinemet to Rytary  ER (3-36.25 mg-145 mg 3 times a day dosed 5 hours apart). The dosage was based on the equivalent amount of Sinemet that I was taking, but due to Rytary’s granule formulation (consisting of both instant and extended-release levodopa) about two-thirds of the levodopa is lost in the bowels and does not get absorbed, so although Rytary’s dose looked higher than Sinemet’s, with the conversion it is about the same. In short, dosing modifications are common during this transition to get it right as it’s not an exact science.

      However, after a week of 3 Rytary caps per dose, I decided to try taking only 2 caps per dose instead. The lower amount still provided an effective dose and I’ve noticed only a slight increase in stiffness but no increased slowness, although slowness was not previously present. I’m a big fan of using the lowest effective medication dosing.

      My new theory is by taking less levodopa now may provide some wiggle room when (if) levodopa-induced dyskinesia happens later on. It’s my understanding that levodopa dosing is usually increased with the onset of levodopa-induced dyskinesia, so if that happens I may not need as much levodopa increase in the future. I might add that I also added an oral CBD emulsion almost 2 years ago that has helped with other symptoms (primarily swallowing difficulties) and it may be helpful with motor symptoms resulting in the need for less levodopa, but that’s another story.

      Hope this helps. You’ll know when to start carbidopa-levodopa, but in the meantime keep on riding–may there be more Parkinson folks on spokes! Btw, with many thanks to the Davis Phinney Foundation for PD, I discovered Patient Assistance Programs that help people in need to afford their meds, and Rytary is very expensive. Check it out! https://www.davisphinneyfoundation.org/blog/reduce-cost-parkinsons-medications/?utm_source=Davis+Phinney+Foundation+Newsletter&utm_campaign=b77d9f9610-EMAIL_CAMPAIGN_2017_03_10_COPY_01&utm_medium=email&utm_term=0_d7445ab902-b77d9f9610-181775425 There’s a bit of leg work required but it may be well worth it.

      Good luck,

      Skip

       

       

       

       

    • #18409
      ann marie Brick
      Participant

      This information is helpful. My first appointment with my “new” neurologist at Mayo is a telemedicine call Monday morning. Now I have more familiarity with some med issues that we can discuss. Thanks again.

    • #18410
      Jean Mellano
      Participant

      Ann Marie, is mayo offering telemedicine calls for first time patients?   Plz let us know how ur call goes.  I just did a telemedicine call with my MDS and she only does them for established patients.

    • #18411
      ann marie Brick
      Participant

      Jean: I’m not sure whether this is a new policy for Mayo to deal with issues created by Covid-19. I do have a cardiologist at Mayo that I see annually, may be that’s why. It sounded to me like they just cancelled everyone’s appointments regardless of whether they were established or new…and are now checking to see who would be willing to do the telemedicine route…I’ll let you know how it goes.

    • #18408
      ann marie Brick
      Participant

      Thanks Michael. Your reply is very helpful except the part about falling.?? Really? I assumed my feet would work better riding than walking…so what do you think causes the falls? Balance issues?

      You’re right about the heat being more problematic. I can ride better in cold temps.

    • #18414
      Glenn M.
      Participant

      For those who can do them, high intensity (aerobic) workouts have been clinically proven beneficial in “slowing down the progression”  in people with early/mild PD. These workouts are not “extreme” high intensity – i.e. they are reportedly doable by many PD patients – but can nonetheless have negative side effects, (i.e. potential injury) unless done very carefully. It’s best practice to consult a Parkinson’s Physical Therapist for setting up a holistic PD exercise program. On my initial visit/diagnosis, my neurologist gave me a  referral and I had  several such PT visits that were very helpful in setting up my exercise program –  and were covered by Medicare.

      On another note, the Cleveland Clinic is recruiting PD patients for a large (250 subjects) 12 month trial to study the benefits, if any, of 3 x/week high intensity cycling workouts (60 – 80% heart rate and 80-90 rpm). Half  will get a Peloton bike set up in their home and be monitored remotely, so you don’t need to be living near the clinic to participate. You do need to be on medication to be eligible, however. A trial description and contact information is available on the website: clinicaltrials.govIn the “other terms” search bar enter ‘”parkinson’s cleveland clinic”. The study is formally named “Pragmatic Formal Lower Extremity Trial for Parkinon’s Disease”!

    • #18433
      Michael R. Scott
      Participant

      Dear Ann Marie,

      Sorry that I did not explain the reason for falling when biking during an outbreak of my hand and arm tremors. At the time of my first fall, I was on a narrow part of the trail in a rock fall area and missed a slight turn because of my tremors and fell downhill into the steep rockfall! That fall cracked my helmet!!!

      The other fall was in a grassy meadow where I missed a turn because my brake hand went numb and my left arm failed to turn. In the process I got pretty muddy and crushed a bunch of beautiful  Monkshood wildflowers! Balance and legs are fine and haven’t gone “off trail” since I began my tremor meds!😎

      Mike

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