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jul

Early PD and vigorous exercise

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Hello -

In mid-December 2017 many articles appeared saying a new study found vigorous exercise seems to be neuroprotective for people in the earlier stages of PD.  Here's a link to the study and here's a link to a good article in the NYT.  By vigorous they mean 80-85% of maximum heartrate on the treadmill 4 times a week.

Well, that inspired me to join a gym.  Right now I'm not doing the treadmill - I'm doing spin classes and will probably branch out to other cardio classes.  80-85% heart rate for me is about 150 beats per minute.  Whew, that seems high, especially to sustain.  But, according to the article, people who did this sort of intense exercise for 6 months showed no worsening in PD symptoms. 

I'm wondering if others have been inspired to take up vigorous exercise after reading about this.  What kinds of exercise works for you, what does your doctor say, have any problems arisen? 

Happy New Year!

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Hi,

I have been doing treadmill about more than 2 yrs , heart beats in 130-150 ranges 1hour,  5days a week. I  have been doing well, PD symptoms are pretty stable since being diagnosed. I also add playing ping pong with the machine, bouncing basket ball on wall/floor on my PD hand for 10-15 min. Fibit is one of the best thing to keep me motivated. Just want to share my exercise routine, anything that would make you sweat and stick with it is good. Good luck.

 

Edited by pinkdaisy

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All exercise is beneficial...you have to know what you can do...if someone hasn't exercised regularly it's not going to be easy to start a vigorous exercise program. You don't want to get discouraged.

Find something you love to do - it makes it easier to stick with it. 

I'm not an expert...just my experience so far... 

Keep moving!!

LAD

Edited by LAD
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My MDS is in the get moving and keep moving camp.  Remember that you don't have to pick only one thing to try, You might get along better doing an activity or it might just be the people you meet that brings you back                        Doug

 

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Rock Steady Boxing is an awesome program.  Would leave with sweat dripping off.   Stenosis in the back put an end to that.  Sounds crazy but riding bike is strengthening my back and great exercise.  Can't wait until warm weather again. :D

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I was emailing Dr Okun about my health and in part of his reply he said, “Azilect and exercise are usually not enough to treat the symptoms of PD and you should consider dopamine or an agonist...”

So, I think there is a limit to the benefits of exercise and that PD meds are also part of the toolbox. I've read that some folks have opted for exercise only and maybe some natural remedies. 

Right now I’m swimming everyday and walking about two miles daily, but I’m going to add other activities to keep it interesting. 

-S

Edited by Superdecooper

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All exercise is good but my experience has been that the Parkinson-specific difference makes all the difference (like BIG, PWR! Moves, RockSteady Boxing, Dance for Parkinson's, etc.). Check out the info on the PWR! Retreat to be held during May in Scottsdale, Arizona - http://www.pwr4life.org/pwr-retreat/  Amazing opportunity. Life-changing for my husband and me and for my sister and her husband. 

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I pay $70 per month, or $15 per session, at the program in Amelia Island, Florida.  The program we are starting in Blackshear GA will be free in the beginning, except for the cost of the gym membership.  But our coaches are all volunteers.  My understanding is it varies depending on the location as well as the set up. 

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The Rock Steady program in the Baltimore area actually wanted $160 per month and they only have classes on M, W & F at 11 am.  I was shocked and kind of angered because I really wanted to join that program.  But the cost was outrageous and the class times were impossible for me. I still work full time although I do have some telework days.  Not surprisingly they only have 5 people in the class.  The man running the program has Parkinson's also.  He claimed that he had to charge that much or he wouldn't make any money.  I'm not a business genius but if you only have 5 people in the class paying $160, wouldn't you make more money if you could enroll 2 or 3 times that many people paying $80 a month.  I would have joined it for that.  Plus, with more people you could have more classes, preferably some in the evenings or weekends.

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This exercise post is near and dear to my heart.  I am 55 years old and in pretty good shape. I have always been physically active.  I've been involved in martial arts for years and I also enjoy going to the gym and lifting weights, among other things.  I was diagnosed about 3 years ago.  Even before my diagnosis I was starting to slow down on some of my activities because of excessive fatigue. I still go to the gym and my martial arts classes.  I just don't try to be superwoman anymore.  When I read that study that says intensive exercise will stop progression of the disease I was excited and thought "Yay! This proves what I already believed" because my progression has seemed to be slow so far. So I jumped on the bandwagon and increased my exercise. I enrolled in some classes at a local MMA school called "Fight Fit" which is basically an extremely difficult HIIT class that lasts for an entire hour.  I was very proud of myself when I made it through the first class.  However, this was not without a lot of increased tremors going on and literally almost no energy to get myself in the car and drive the 2 miles back home to my house.  The next day I was exhausted and I felt like every last bit of dopamine had been wiped out of my body.  Hmm...I thought exercise was supposed to make you better and increase your dopamine production.  Where are those endorphins?  I don't like to give up because like I said...I'm hardheaded, I'm a woman and I think I can be superwoman.  The article says I need intensive exercise will make me better so I'm not giving up.  I ended up going to 2 more classes.  When it was time to go to the next class I literally cringed inside.  I couldn't bring myself to go and do that to my body again.  I loved the actual exercise and the comaraderie of the other women in the class.  But I just felt sooo bad after the class and the next day. My symptoms actually started getting worse and then I started feeling depressed.  Yes I know that I can do other exercise but I've actually been having a hard time in some of my martial arts classes lately because of an increase in tremors.  I actually quit my Saturday class cause they practiced for 3 hours.  I have felt like a failure because I'm now doing less exercise than I was before diagnosis.  Yet everybody tells us that you must do intensive exercise.  I talked to a friend who's had this disease for 25 years.  She made me realize a few things about this "study" that is posted all over the internet.

1)  This is not a scientific study by any means.

2)  Everybody progresses at a different rate so you can't compare one person to another.

3)  There's no way to determine how much somebody would have progressed in 6 months if they had not done the exercise.  Seriously, there's no baseline.  Six months is a very short time in the space of a lifetime.  They might not have gotten worse during that time.

4)  What the hell is "intensive exercise?"  The study doesn't even mention how long the subjects exercised for.  Obviously intensive exercise will be different for every person.

So I decided I'm not going to let myself get depressed because I can no longer do "intensive exercise".  I'm going to continue doing whatever I can.  I'm really sick of all the people who post pictures of themselves doing bodybuilding, running marathons and similar things and trying to tell the PD community that they are not progressing because they are doing this intensive level of exercise.  Maybe the truth is that their disease is progressing slowly so therefore they have the ability to continue working out like that and not the reverse.  Seriously, an entire year before I ever had a tremor or other symptom of PD I suffered with extreme fatigue.  At the time I was going to the gym doing a five day split, lifting very heavy (for a 110 pd woman).  I was so tired in the evenings, I could barely make dinner for myself and my teenage son, then I would be crawling into the bed.  My mom kept telling me to go see the doctor because that wasn't normal.  Of course, I refused because I thought it was just because I had increased my weight lifting routine and I just needed to get used to it.  I didn't want to quit because I had a goal.  Anyway, the doctor's would have never figured out what was wrong with me even if I had gone cause I was misdiagnosed even when my tremors started manifesting.

I'd like to end all this rambling to say that PWP should always keep moving and do whatever exercise they are capable of doing even if it's just walking. Yes, it will help you to feel better and probably help to keep your muscles from becoming rigid and locking up on you.  However, there is no scientific evidence that it will keep you from progressing.  Likewise, you are guaranteed to feel like crap if you give up and lay in the bed all day.

 

 

 

 

 

 

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Hi Tweets32, 

I can relate to your story. Since I was diagnosed in Oct 2017 (after suspecting it for months), I started to ride a stationary bike nearly every day for a half hour at a moderate clip and added stretching and strength exercises to the mix (with the direction of a local PT). I attended a Good Start program the end of November and the PT speaker (who was great, btw) indicated that in order to get the full benefit, you should exercise at a more intense level for a minimum of 2 1/2 hours a week. Sooooo...I kicked it up a notch, nothing crazy, but within a few days every joint in my body was cracking and popping frequently throughout the day. My shoulders have been sore since then too (particularly one, and it's on my "good side", which is frustrating). I thought maybe it had something to do with the Pramipexole that I'm on since that can cause swelling, but I've reduced my dosage significantly, and it's still happening. Neither my doctor nor my PT now why it's happening either...I'm a mystery. ;) 

Short story long, I've gone back to cycling at a moderate clip as I'm sure that's better than nothing at all...and being active makes me feel better physically and mentally. So, I just wanted to say that I agree with you; you don't want to push yourself to the point of extreme fatigue and injury. I'm taking it easy with my shoulder in hopes that whatever is going on will heal and I can start to gently strengthen it again over time. 

Wishing you the best!

 

 

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Another thing, from where I sit, is making sure you are adequately medicated so that you can exercise. It is a fine balance. My husband and sister both tried to delay medicine as long as they could (not really recommended now) but found that once they had the right balance of medications, they could exercise more. PD is complicated and there is no one size fits all. 

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My husband is 70 years old.  He was diagnosed about 5 years ago.  He is so diligent about doing what needs to be done to stay well.  Our Neurologist department has LSVT exercise three times a week.  He tries faithfully to get to these exercise classes.  He also went through the LSVT exercise program.  THE EXERCISE MAKES ALL THE DIFFERENCE IN THE WORLD.  He used to shuffle and he no longer does that.  He seems to be having some difficulty with his speech.  His voice becomes horse and he speaks quite.  He has also become less of a conversationalist.  His Neurologist suggested he go to speech therapy.  He has gone through the LSVT LOUD program and it has helped.  I would like to know why LSVT charges $45.00 for their DVD for practice.  Seems as if they are taking advantage of Parkinson's patients.  Just Note:   He recently suffered from a bout of whatever is going around.  IN MY OPINION -  HE IS A GREAT GUY BUT WHEN HE GETS SICK......  HIS BODY SHUTS DOWN.  HE SEEMS TO HAVE TO USE EVERY EFFORT TO FIGHT THE SICKNESS AND HE BECOMES A ZOMBIE.  IT TAKES HIM LONGER TO GET OVER IT.  So anyone who is suffering any flu, cold, sickness.  Take note:  if you have Parkinson's your extra slowness is most likely being caused because your brain is fighting the illness.  Take it easy.  Caregivers note:   Be patient, make the Parkinson's patient take extra care of themselves.  The one thing that I stress for my husband is to please make sure you put your medication in pill boxes.  I only take a Blood pressure pill and thyroid medication and if I don't have those two pills in my pill box........  I don't recall if I took it this morning or not.  As I say to my husband, if you are on a plane you need to put the oxygen mask on first in order to help yourself to help others.  It is the one things that I insist.  MAKE SURE YOU FILL THE PILL BOTTLES AND TAKE YOUR MEDICATION ON TIME.  A very happy new year to you all and read and learn what helps other patients and remember.  Every case of Parkinson's is different.  But we can all learn from each other.  God Bless

 

 

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The original Rock Steady Boxing program was a great idea, sadly since the main organization seems to have lost focus.

Evaluate every person, put them into one of four classes depending on their ability. Level four is a wheel chair, barely mobile. Do what you can with a lot of these folks sitting down, or laying on the floor.  Level ones are most active, hence more intense workouts.

HIIT = High-Intensity Interval Training. Jumping Jacks for 30 seconds, rest 20, repeat 3x. That is HIIT.  It doesn't mean I need to do jumping jacks for three minutes (ouch), but rapid intervals and rest. I still hit my target heart rate of 145.

Sit-ups: I ruptured lower lumbar disc. Think squished donut. A neurosurgeon told me no surgery, but since walking helped. Keep walking.  Sit-up is out of the question, so I do a modified version with my spine flat on the floor. Arms and legs out and lift them. Engages my core, saves my back, lumbar is fine. 

Pushups and Planks. I started off 0 pushups, even on my knees. I had no core strength. I can now do 20 pushups! This is TWO YEARS later an I am in great shape.

The theme is start off slow. It takes months to build up endurance! During the past 28 months, I've had part of my lung removed (nsclc-adenocarcinoma) and brain surgery (DBS). My docs have all commented I am in great shape and working out helped get through those operations.  Slow and steady pace!

The problem with Rock Steady Boxing:

No protection for gym owners. Sign a three-year lease for a 10,000 sq ft gym, and they will let someone set up 1 mile away. Hint those gyms cost money, instructors cost money, so if you spend two years building up a clientele, there is no protection. 

No oversite: They will not verify that the gyms are keeping to their program.

One of the gyms saw it was a money maker, and hired a boxing coach to teach the class. The coach took great pleasure in belittling people they weren't paying attention. A horrible program, thankfully since folded. 

No understanding of what is best for those with Parkinson's. One affiliate covered a large metro area. Coach realized driving two hours roundtrip to class was not viable for those with Parkinson's. Rather than leasing one location, she has three different locations. RSB said "that is three locations, you have to pay for three sites, oh the fee is $1200 each per year. 

No understanding of why great coaches' coach: Latest RSB contacts tell the person "if you stop doing RSB, you can not start another for Parkinson's Fitness for three years"  WTF? Our couches worked with Parkinsons and Fitness before RSB and took counsels agreement while not enforceable, you could spend thousands to confirm that it is not enforceable. So you will see more affiliates "opt out" for that reason.

Two years ago RSB was a great program. Train coaches (for a fee) let them start up their location, pay $500 a year as an affiliate. Now they have 700 locations at $1200 annually. $840,000  generated from fees in revenue.    They are their own worst enemy as it will dilute the name, and seems to be focused on greed. Currently, only 990 from 2015 are available but will be very interesting to review in coming years.  Charity Navigator only rates once they have seven years of IRS filings to review.

https://www.charitynavigator.org/index.cfm?bay=search.profile&ein=205113083

Meanwhile, keep moving!   Find a fitness class that is a good fit and keep your motivated to keep going!

 

 

 

 

 

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Thanks, Texas Tom. I found your post about RSB very interesting. I tried them last year for several weeks, and the good news is it was very effective. I felt more fit than I had in a long time & got a better workout there than at other types of activities I had tried. I was able to start jumping rope for the first time in a long time. It was great fun & I felt like a kid again!

Unfortunately, the bad news  is I fell a lot--having balance problems since DBS 2 years ago---and I think those  hard jolts were too much for me, even though the floor & walls were padded. I had to stop going to RSB because I started having serious pain in my back, hips, & knees. The coaches were lovely people, but not knowledgeable enough about PD, & there was no tier program based on ability, as you describe  in other gyms. There was little effort made to tailor activities to  an individual. I was encouraged to do everything, always pushing harder. I think if you try RSB, be careful! Pay attention to  your own body & stop right away if there are early warning signs. And try to pick a gym with a tier program for different stages/abilities of PD, along with PD-experienced staff.

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1 hour ago, Appala said:

Thanks, Texas Tom. I found your post about RSB very interesting. I tried them last year for several weeks, and the good news is it was very effective. I felt more fit than I had in a long time & got a better workout there than at other types of activities I had tried. I was able to start jumping rope for the first time in a long time. It was great fun & I felt like a kid again!

Unfortunately, the bad news  is I fell a lot--having balance problems since DBS 2 years ago---and I think those  hard jolts were too much for me, even though the floor & walls were padded. I had to stop going to RSB because I started having serious pain in my back, hips, & knees. The coaches were lovely people, but not knowledgeable enough about PD, & there was no tier program based on ability, as you describe  in other gyms. There was little effort made to tailor activities to  an individual. I was encouraged to do everything, always pushing harder. I think if you try RSB, be careful! Pay attention to  your own body & stop right away if there are early warning signs. And try to pick a gym with a tier program for different stages/abilities of PD, along with PD-experienced staff.

I do a program PWR Moves.

Parkinson's wellness recovery...www.pwr4life.org.... it's very good. You can look for a certified trainer or therapist in their website. 

I also take ballroom dancing with my husband. 

LAD

Edited by LAD
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I was a huge advocate of RSB program, but visiting other gyms soon made me realize there is zero oversight and accountability.

PWR is a good program, but their director believes PD caused lack of core muscles. Seeing PWP from a wheelchair to doing knee pushups showed me that isn't true.

I have a very low resting heart rate of 52 (much lower than most), but find it I sustain one hour with 145 HR that is an intense workout!

Two heart rate calculators:

http://www.heart.org/HEARTORG/HealthyLiving/PhysicalActivity/Target-Heart-Rates_UCM_434341_Article.jsp#

https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-intensity/art-20046887?pg=2

Mayo Clinic Method,  (220-59) - 52 (Resting) gives me about  HHR 110.   Target is 70% too 85% of that number, plus resting heart rate.  So 132 to 145.

American Heart Association gives a 60-year-old from 112 to 145.

Keep in mind when I first started working out I was 300 pounds, could not go a jumping jack nor on full pushup (even on my knees). Chronic back pain, and lots of issues. Two years later dropped to 240# (It's crept back to 252# after I started on Gabapentin and DBS) but 20 pushups, 50 full jumping jacks, and working out sweating for 60 minutes are all good things!

Practicing our falls (volunteer orientation day, so crowded class):

Oh, yes the kid who never took P.E. nor could get my mind to do a jumping jack.

 

 

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Maybe this is too simplistic but Find something you like to do that will keep you motivated to stick to it. You can have the most recommended program in the world but if you don't enjoy it, you probably won't stay with it.  (At least I don't think I would.)

Keep moving!

 

LAD

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I haven't posted in awhile and this thread caught my eye. My nature is to cheer others on. Within the last few months I would definitely advocate for high intensity cardio workout, e.g. on a treadmill. Everyone is different. I would get my heart rate up to 150-155+. I always felt so much better afterward. Fell out of the routine. I guess primarily due to obligations to work and only so much time. More recently I over exerted and strained my right foot. For anyone in the 60's range knows it takes longer for things to heal. So I've been nursing that foot for about 3 weeks. Its getting better and I hope to get back into exercise with more exertion. In the meantime, been doing less stressfull exercise and more PD related stretching found on YouTube.

But yes, if you're up to it, I would advocate cardio exercise.

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I can't emphasize enough how important I believe exercise is. I exercise for an hour, four or five days a week. One day I take a Parkinson's boxing class based on Rock Steady Boxing, one day I do Pilates with a trainer, one day I do floor Pilates and lift dumbbell weights on my own, one day I do a combination of simple yoga poses, stretches, and cardio exercise. I also walk as much as I can. I was diagnosed three years ago at age 52, and aside from a low dose of Zoloft for anxiety/depression, my MDS agrees I don't need any other Parkinson's medication at this time. Of course everyone is different but exercise can only help your strength, flexibility, mood, and overall health. Find things you like and stick with them.

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Hi,  Haven’t posted before, just wanted to relate the exercise I do that I am certain has held off PD progression. I was diagnosed 7 years ago, I am 56.

3 times a week I go to spin class and reach HR numbers of 130-150.

2 times a week I box with a boxing coach, regularly reaching HR of 150.

I golf 3 x a week

2 x a week, general work out.

This is a fairly rigorous schedule and I am pretty much always sore but my symptoms have actually reduced. I no longer have a tremor and I walk more smoothly. Whether this is just being stronger and more limber I don’t really care...I feel so much better being active.

One interesting thing that occurred today, was in taking my medication prior to spin class, I took my extended release drug, Rytary, instead of carbidopa/levodopa . This resulted in the drug wearing off halfway thru class. I presume the lower concentration of the extended release drug was not strong enough to provide sufficient dopamine for the high intensity workout. Has anyone else experienced this. 

I hope this post finds everyone well, KEEP MOVING.

 

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What's vigorous to you may be different than vigorous to me.  Do what you like, get your heart pumping and do it safely. Exercise won't help if you injure yourself. 

If we keep moving, maybe it won't catch up!!!😉

 

LAD

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A year and a half after DBS surgery and exercise definitely helps. Prior to surgery I was using a cane or walker to get around with no energy to exercise. Much credit goes to DBS, but if I slack off for a couple days, stiffness sets in.

One mile dog walk and Tai chi every morning. Alternate pickleball and road cycling every other day. The ability to bicycle still amazes me.

Two hours is about my limit for (fairly) strenuous exercise. I have a separate DBS setting specifically for exercise, and also take a little more medication. I have to be careful cycling because if I run out of energy I have trouble with balance. I'm sure every PWP has their own limitations that will change with disease progression.

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