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Were you an athlete before diagnosis?
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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.
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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?
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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.
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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!
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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!
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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
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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
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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
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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.
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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.
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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.
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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.
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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.gov. In the “other terms” search bar enter ‘”parkinson’s cleveland clinic”. The study is formally named “Pragmatic Formal Lower Extremity Trial for Parkinon’s Disease”!
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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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I was very athletic during my college years . . . playing both baseball and ice hockey. As I got older I played in a very competitive softball league and then suddenly, I found that I couldn’t throw a ball with any kind of ‘mustard’. Eventually the distance of each throw also became shorter, less accurate and I noticed a stiffness in my throwing arm. As I recall, about that time I also started getting tremors so I made an appointment with a doctor who said that essential tremors were not uncommon and recommended PT for my arm. The PT had little effect and the tremors grew worse. Now, many years later, I realized that the issues I had was an early indication of my PD.
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