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Dr. Okun

Post of the Week: What are the Barriers to Getting People With Parkinson's Disease to Exercise

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masayadzyto    0

Dear sir,

Is surgical treatment is the final and complete solution to this problem or the person could suffer other neural problems also after surgery.

I have come across some people who have benefited a lot through a physiotherapist. Do a person have sufficient time period to wait for the outcome of the exercise efforts.

 

Thank you

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Dr. Okun    409

Surgery for Parkinson's disease (DBS and lesion therapy) is not a cure, though it can provide powerful symptomatic benefits.

 

Exercise usually needs to be consistent and frequent (preferably daily) to derive the best benefits in Parkinson's disease.

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siak    43

Please help! I realize that this is an old thread but I am hoping to get some help. I know that exercise is important but I can't get past the extreme fatigue and back pain to do much. It is a cycle I can't escape. I am so tired all the time which has become worse after  DBS surgery. The back pain is also new for me . Is there anything that I can take or do for the fatigue so that I can exercise? My primary care doc suggested ADHD meds or provigil but I havent had him prescribe it yet. I am also having trouble with the PT letting me exercise in the pool, even though I know from previous experience that it is less tiring in the water. They want to only let me in the pool about 3-4 x and then move to land. I can understand that for a person without PD this would be good, but if I cant exercise on land, why are they insisting that I change? Would the PD advocate be able to intercede for me on this ??

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Dr. Okun    409

Thanks for the question.  I usually recommend supervised pool exercise in these situations.  Be careful never to go into the pool unsupervised as medications may wear off and you may get in trouble and possibly drown!  

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pasorgel    1

Love these forums. Thank you for moderating them!

 

A tad of background for readers (I am a patient of Dr Okun's so he is aware of this). I am 53 years old, diagnosed at age 44 (possibly able to link first symptom onset 15 years earlier. I have had DBS for 6 years now. In addition to PD, I suffer from CIDP, an autoimmune disease that attacks my peripheral nerves-- primarily my feet (where I have virtually no feeling, and absolutely no tendon reflexes) and lower legs.

 

Now for the question: I had a bunch of close friends to the beach earlier this spring. As guys would do, we started playing catch with a football. I was horrified to find virtually all of my hand-eye coordination was gone! I would over-judge or under-judge how far a ball that was thrown to me was. Or, I would fade back like a QB to throw a ball, stumble all over the place, and hit the sand. I used to be a competitive Division 1 athlete in college (soccer), and have noted similar coordination problems when simply kicking a ball around with my nephew. Also, if I try to walk into the ocean and there is even a tiny undertow, I can't even stand! These things are disturbing to me.

 

Dr. Okun, I would like to be able to do the simple things I used to be able to do, but apparently can't. Can you explain what's going on, and is there anything I can do about it? Is this likely a PD thing or a CIDP thing, or both (one compounding the other). I am otherwise active, and typically walk at least 1-2 miles a day. Thank you!

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Dr. Okun    409

It is likely both, but the loss of proprioception (knowing where the extremities are in space) is likely due more to the CIDP neuropathy.

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Lonnise    60

Hello Dr. Okun and those who follow your forum:

 

Exercise being critical to overall health management is something my family and I have always known and valued; our "obstacles" don't involve "education/improved knowledge" as much as they involve mental stamina and building new "life-work balance" habits.  We like to say that "work should be a part of life, not vice versa" however we often don't live up to that saying.

 

As we went from college graduates to middle-aged people (how did that time fly by so fast?), the deliberate, "vigorous" exercise that once was so "easy" and "fit" into our daily schedules slipped away, replaced by more focus on making a difference in the world and earning the income needed for the "life style" we love.  Additionally, we "became middle-aged" and with that have the "normal" arthritis, cartilage and disc deterioration, muscle loss, and other related physical conditions that "give us excuses" not to pursue vigorous exercise.

 

Twelve days ago, my husband of thirty years was diagnosed with "mild Parkinson's".  We are still "recovering our balance" from this unwelcome news but this is not our first rodeo, (one of the realities of living beyond age 50) it's just the toughest bull we've ridden so far.  

 

My husband and I continue to remain "active" throughout the day, our jobs are not sedentary in nature, but they can be emotionally/mentally stressful and we are often "exhausted" after the day's work.  Furthermore, we have jobs and work focuses that involve of 10+ hours a day or 55+ hours per week devoted to "work".  This obviously "gobbles up" a great deal of physical time but more insidiously it depletes our mental discipline to "exercise before or after work".  (After work is definitely more suitable for our personalities and work restrictions).

 

We have very deliberately stepped up our commitment to walking 2 miles every evening (at least 5 days a week), but I fear that will not suffice in helping with neuroprotection against PD, and once the daylight hours wane, I fear we will struggle even more to do the exercise we really need to.   We are both very worried about our employers' reactions to us "cutting back on work hours" as we are hoping to "retire" in June of 2018, but we cannot afford to do so before then.

 

Nonetheless, I don't know how else we will be able to commit our minds and our bodies to a deliberate exercise regimen specifically focused on "keeping" my husband's PD at the "mild" level which is our goal and the tether of hope to which we hold tightly as we "begin our ride on this unbreakable (?) bull".

 

Another "obstacle" that we have is where we live and the fact that we are both somewhat introverted, my husband more so than I.  There aren't "exercise classes" for PD within a reasonable distance from here and we don't have the finances to hire personal trainers/therapists.  Additionally when we have to fill out paperwork and disclose that my husband "now" has PD (he's had it for years I'm sure, but now it's "official") we are concerned that we will be considered a "legal/insurance risk" further restricting our options.

 

I appreciate that I'm identifying many "self-imposed" obstacles and a few that come with the 'revised reality' of "official PD", but I'm reaching out to ask for suggestions at helping us overcome these obstacles and build long-lasting habits of deliberate daily exercise that will help us achieve our goal of "arresting" PD at the "mild" level.  (I fully acknowledge that PD is a progressive disease with no known cure, but we "want" to manage symptoms with therapies that have minimal to no negative side effects, and explore any reasonable strategies that may correlate to slowing progression).

 

Thank you in advance for your patience in reading this and for any suggestions you have.

 

Lonnise

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Dr. Okun    409

Thank you for the question.  First, please feel free to use our 18004PDINFO helpline as our nurses can help.  Second, early in PD with optimal medical treatment he should be able to be treated effectively and continue to work until 2018 (that is a short time interval and I bet a good neurologist will help you get there).  Finally, walking and stretching every day can be good and easy exercise for people with busy jobs.  You may want to get a step monitor and try to maximize steps.  Hope that helps.

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fire1fl    2

Your post indicates that you live in Maryland. Use "Parkinson's support group" as a search term to find local chapters of various kinds, one or more of which may be close to you or close to what you're looking for.

I don't have a lot of advice because I'm relatively new to the disease but a theme that resonates with me is the more exercise, healthy diet, and in-depth research I can do about the disease the more I will forestall intensification of symptoms.

There are some interesting exercise programs showing results (slowing progression) available as illustrative YouTube videos. One shows that a test in which the non-Parkinson's partner rode a tandem bicycle with the Parkinson's partner the NPP was able to drive the pace and distance farther than would otherwise have occurred. Likewise, there is some research in something called "Rock Steady Boxing" in which noncontact sparring for exercise is showing some positive results. Group exercises and classes will tend to escalate your participation in your own care. If your introversion or possibly lack of results from joining an exercise support group get in the way of your future exercise then start your own support group that is more to your liking. In my community there are exercise groups of every kind one can think of, and many of them have overcome the shyness and introversion of new members.

It's not clear what your health insurance options are. Lucky for me, I am Medicare eligible and have expensive but broad-based secondary coverage. So far that means I'm able to see a physical therapist once a week for a 45 minute-one hour appointment. It is right next to the gym where I regularly work out. The PT has been gradually increasing the amount of exercise with which I am being challenged. I also volunteered for a research study on cognition effects that included a free MRI brain scan, which I view as establishing my personal baseline for some future point when I may need (or be evaluated for) deep brain stimulation. Whether the MRI or cognition test show anything at all is still open-ended, but it helps to keep engaged with what's going on especially if you have a research center like the NIH close by.

The original post was about how to get motivated to exercise. I think the hardest part is considering (and making the decision) that daily serious exercise will be the new lifestyle (I call mine Parkinson's+).. And what is so totally awesome is that my partner/caretaker joins in and motivates me mightily with her expectations that it's not a chore, but rather a lifestyle. Hope this helps.

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