[Gregg I Daniels]

I am nearing my 73 third birthday and have had Parkinson’s for 11 years. Mine is tremor dominant and I had DBS 2 1/2 years ago which has helped the tremor significantly. I have a number of other symptoms popping up including frequency of urination, trouble sleeping through the night, some neuropathy in my feet and my balance isn’t as good as it used to be. The trouble is, its hard to distinguish if these other ailments are actually a result of Parkinson’s or advancing age. I know other people with some or all of these ailments, who are of similar age or younger, and they do not have Parkinson’s. In spite of these other health issues I am able to continue functioning much as before. I attribute this to DBS, a commitment to regular intense exercise, and an attitude of not giving up. I am fully aware that PD could progress to the point I have to give up certain hobbies such as downhill mountain biking and dirt biking but I will do them as long as I can. As my neurologist told me during my last visit, most people your age are not doing what you are doing whether they have Parkinson’s or not. I would encourage every PD patient to exercise as best they can as that is the One Proven Way do slow the progression. I try to live my life remembering what my Grandfather told me. He said he had several health problems but chose to ignore them as best possible and just keep going as best you can. He was an old farmer who was not someone to mess with even in his 70’s and lived to be 91.

[Gregg I Daniels]

Taking online classes from MIT.  There is a large selection of subjects for undergraduate and graduate level classes.  Some classes are coordinated through edx and MITx.  These classes are graded and include lectures and quizzes.  They are not easy for the most part and require some critical thinking. Some of the classes can also have implications for PD as well.  I have taken a variety including Genetics, Cell Biology, Molecular Biology.  Prerequisites are listed in the syllabus for each class.  Also, have taken various math, physics and engineering classes.  Highly recommend to anyone wanting a learning challenge.  Some graded classes require a nominal fee to receive a certificate or you can audit the class for free.  Check out MIT OpenCourseWare.

I also work on balance and stability.  I would add that activities requiring balance such as bicycling are brain exercise as well as physical exercise, especially mountain biking as it also requires decision making due to terrain changes.

[Gregg I Daniels]

I guess I would say that I am both, a researcher and someone who takes it day by day.  50 years ago I got my degree in physiology and psychology, known as neuroscience these days.  I am still curious about this science and others as well.  So I have kept up as best I can by taking online courses from MIT and other colleges.  So I tend to read and at least mostly understand the detailed research papers.  I also have participated in some online PD studies.  My takeaway at this point is that there will not be a cure in my lifetime (age 72, PD for past 11 years) although there may be something on the horizon to slow the progression, assuming the FDA will approve anything in time.  I am fortunate that my symptoms to date have been relatively mild and were improved by DBS.  Also, very fortunate to have had a great neurosurgeon for the DBS and a great neurologist for follow up programming and monitoring possible disease progression.  The one thing that helps me the most and is pretty well documented by research is EXERCISE.  Also, a good balanced diet of fruit, vegetables and protein.  I should mention that my primary care doctor preaches this to me every time I see her for whatever reason. I see exercise and diet as two things that I can control to a large degree and the data supports that these two things do slow the progression.  Intense exercise is best if your condition allows it but anything is better that nothing.   My favorites are mountain biking and dirt biking together with weight training and some other type of cardio in the winter months.  Yoga (my wife is an instructor) is also great but I admit she has to force me to do it!

[Gregg I Daniels]

As Charles indicated above, how do we measure whether exercise really delays the disease on an individual basis?  On the other hand statistics show that people who exercise regularly tend to progress slower than those who don’t.  I have always exercised regularly doing a variety of things; weights, cardio, boxing, mountain bike, dirt bike, etc.  I have no way of knowing if it is slowing the progression but my neurologist says I look great for having PD for 9 1/2 years and I know if I don’t exercise I don’t feel as well.  I also believe in challenging mental exercise such as taking college level classes via internet.  I certainly am not as sharp as I used to be and not as fit as I was when younger but I do believe I am better off doing these things than just giving in to this disease.

[Gregg I Daniels]

I am 71 yrs old, have had PD for about 9 1/2 yrs with major symptom being a right hand tremor.  Was taking 51/2 Sinemet a day prior to DBS last October. Prior to the surgery I was always able to drive ok but if riding my motorcycle I had to time the meds and be back before they wore off, usually in about 3 hrs.  After DBS, I now take 1 Sinemet a day and rarely have to worry about downtime.

I exercise regularly doing both cardio and strength workouts in order that I can keep doing the hobbies I enjoy for as long as possible.  I have always been a speed junkie (actual mph speed not the drugs) and still drive my 680 hp 6 speed manual Camaro, my 180hp sport bike, my dirt bike and do downhill mountain biking.  All of which I am able do at least as well as my riding buddies that are 10 to 15 yrs younger and do not have PD.

It is not my intention to brag as I am fully aware that every PD case is unique and my symptoms could worsen at any time, but just to let others know that staying as active as possible for as long as possible is the best way I know to combat this rotten disease. Personally, I take it as a challenge to hold on to a sense of freedom as long as I can.  Never Surrender!

[Gregg I Daniels]

A ridiculous cutesy term that signals weakness.  What about calling people with cancer Cancies?  Degrading in the same way as calling someone Whitey or Blackie.

[Gregg I Daniels]

Jean, I did see the article and am encouraged by it. My goal is to stay as active as possible for as long as I am able.
Hopefully there will be some approved research soon that will slow the progression or stop the progression. Due to the complexity of the disease and great differences in individuals symptoms, I seriously doubt a cure will be found in the next 20 years.

[Gregg I Daniels]

I first noticed tremor symtoms in 2012 and saw a neurologist in 2013 who confirmed that I have Parkinsons. So far my only symtoms are tremor and slight stiffness in my right arm. I am very active and exercise regulary including cardio, weights, stretching, mountain biking and dirt biking. I take 3 doses/day of Senemet, 1mg/day of Azilect, and 2.25 mg/day Mirapex. The tremor has progressed slowly and is especially annoying as it affects my throttle control on the dirt bike and street motorcycle. I have read a lot of research and case studies on DBS, discussed with my neurologist and am seriously considering it. I do have reservations about surgery in general and especially neurosurgery. However, I am going to start the pre-surgery testing protocol soon and then make a decision. I would like to hear from anyone who has had DBS

[Gregg I Daniels]

KG,
Everything you state in your message is true regarding that there is no actual scientific “proof” that exercise delays the progression. As a science oriented individual, I can appreciate that. However, it is a fact that people who exercise are statistically better off than those who do not, whether they have PD or not. Statistically significant over a very large population sample. It is a fact and not theory or hypothesis. So, why would we expect PD patients not to benefit from exercise? No one has come forward to at least in this forum to state that exercise has caused their PD to worsen. I will say it will be interesting to find out what level of exercise is beneficial to PD patients. Hopefully, the new study will recruit participants of varying ages and length of time with the disease and healthy participants of varying ages as well. There are many variables to control also, such as what types of exercise are more beneficial than others, age of participants, other health issues, etc. There are so many types of exercise that I am sure a good many cannot be tested. Hopefully, the experimental rigor you are hoping for can be managed. I look forward to the results.

[Gregg I Daniels]

Right hand tremor and some minor left hand tremor are my main symptoms.  I have had PD for 11 years and got DBS 2 1/2 years ago. Prior to DBS I was taking 5-6 100/25 c/l  per day.  Since DBS I now take 0 to 1 100/25 c/l a day depending on physical or emotional stress, injury, or sometimes its just worse for no reason that I can identify. DBS and a competent programmer have made a huge difference for me.  I am 72 and still able to mountain bike and ride my dirt bike and street motorcycles without having to worry about timing my pills to control the tremor.

[Gregg I Daniels]

I don’t know about availability  on you.tube but I have a heavy bag and train at home.  Really gets your heart rate up and is great for alleviating any depression and aggression.  I also mountain bike, lift weights, dirt bike (most fun for those of us who crave speed) and use an elliptical machine (least favorite exercise).  Yoga stretches and balance exercises are also helpful. All have their benefits.  I am 72, 11 years with PD, and had DBS 2 years ago.

[Gregg I Daniels]

Bill, I agree with you on every point.  Both my wife and I initially got a shot and a booster in 2021.  No shots since.  We both got Covid over Thanksgiving and it lasted about 7 days and seemed like a flu/cold hybrid.  Except for loosing my sense of taste and smell off and on for 3 weeks, and my wife having a recurring mild sore throat for about 3 weeks, we have had no lingering effects.  Now they are saying get another booster even if you had a booster over 3 months ago.  No thanks.

[Gregg I Daniels]

My wife and I got the initial shot and then one booster.  Neither of us got Covid.  However, we know a lot of people who got 2 or 3 shots and still got Covid.  Some more serious than others.  We also know people who didn’t get any shots and some got Covid of varying seriousness while others didn’t get it at all.  I also believe that it will be around a long time and will continue to produce more variants, some of which will produce illness and others will not.  Like a lot of viruses, i.e. the flu, common cold, Covid can mutate into different variants faster than science can keep up.  Getting a flu shot every year protects you from about 50% of flu variants.  I imagine the Covid vaccines will be similar.  The other thing about the Covid vaccines is the newness of mRNA vaccines and the known and unknown possible side effects.  I know several people who have had side effects such as rapid heart beat or the vaccine simply made them very sick.  Of course the drug companies can deny it was the vaccines and the problems were just coincidence.  Not to mention they are immune from any lawsuits.  I do believe that mRNA vaccines can be the wave of the future for a lot of illnesses but we are not there yet.  So, our decision at this point is to not get any further shots but rather try to keep our immunes systems working well.  I am 72 and have had  tremor dominant PD for 11 yrs. I got DBS in 2020 and it has helped a lot.  I exercise a lot and “try” to eat properly.  My background is in neuroscience with ongoing studies through MIT in genetics and biochemistry.  I am no expert by any means, but have done a lot of homework on the mRNA vaccines.

[Gregg I Daniels]

Robert, You are definitely on the right track with the exercise routines.  I am 72 and have had PD for 11 years.  The main symptom has always been a right hand tremor.  I started taking C/L about 2 years after getting the disease and gradually increased it to 6 per day before getting DBS in 2020. Now I take 1/2 to 1 C/L per day with no problems with dyskinesia.  No noticeable increase in symptoms in the last 2 years. I also take 1 mg per day of Azilect.  I supplement with N-AC, Vitamin D and Vitamin C.  Try to eat a healthy diet with lots of fruits and vegetables ( although I do cheat).  I lift weights combined with interval cardio, ride a mountain bike and a dirt bike. work out on the heavy bag, hike, and ride a fast street motorcycle (used to roadrace and hard to give up the speed rush). Also, try to keep my brain working by taking some pretty difficult online classes from MIT. Basically, I am trying my best to hold this disease off as much as I can.  While hitting the heavy bag I also say to myself, F$@k Parkinson’s!

[Gregg I Daniels]

Joakim,

Send me a private message.

[Gregg I Daniels]

Joakim,  sorry to hear you have given up motorcycles.  They are my first love (well besides my wife) and I am reluctant to give them up any time soon.  See my original post.  Don’t know if you have considered DBS but it made a huge difference for me.  Tremor is my main symptom to date and DBS alleviated that considerably.   Also a 80% reduction in Sinemet.  I have a friend with other symptoms and DBS also works very well for him. At 71 years old and nearly 10 years of PD I am still riding high performance street bikes and  dirt bikes.  If you want to consider DBS or just want to correspond please feel free to post me and we can exchange emails or phone numbers.

[Gregg I Daniels]

I am 69 and have had PD for almost 8 years. Right hand tremor and difficulty staying asleep are the problems. I take 4 c/l tabs a day and azilect. We are getting ready for a major move and my 44 year old learning disabled daughter who is also mildly schizophrenic has been living with us for the past year. Stress certainly increases the symptoms. I have always been active and moderately athletic so I try to stay in shape as best possible. I raced motorcycles until I was 58. I no longer race but still ride street motorcycles, dirt bikes and mountain bikes. The c/l works fairly well but I am at the point of needing to increase the dosage. Seriously considering dbs within the next year to better control the tremor. I am not ready to give up the motorcycles and downhill mountain biking. The need for speed is inborn I guess.