Life with Parkinson’s Disease: What We’ve Learned

Posted December 15th, 2011 by

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members.

Age at Which Patients Experienced Their First Parkinson's Symptom

Taking a look at the makeup of our PD community, 52% are male, and 48% are female.  More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59.  Others report experiencing their first symptom anywhere from adolescence to their seventies.  (See the chart for a complete breakdown.)  What exactly are the symptoms of this condition?  Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.

As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions.  Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more.   Here’s what one patient writes about Sinemet on her evaluation:  “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.

Some of the Most Commonly Reported Treatments for Parkinson's, As Reported by PatientsLikeMe Members

Other commonly reported PD treatments include prescription medications such as Ropinirole (Requip), Pramipexole (Mirapex), Rasagiline (Azilect) and Amantadine; OTC supplements such as CoQ10; and surgical procedures such as Deep Brain Stimulation (DBS).  Click on the treatment name to see the data we’ve amassed for each, including hundreds of treatment evaluations submitted by our patients.

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about PD.


2 Comments

  1. CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION…LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU…BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS….
    STILL INTERESTED? READ ON!…(and no I am not selling anything!)

    I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.

    The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamet, though he had a lot of side effects from Mirapex and Artane.
    I was busy teaching Science and although I lived close, found it tough to find the time to help out….though I’d often come over on the weekends.

    Years 5-10 became tougher as you know…Sinamet was introduced in year 7 and really helped for a while…but in year 11 Dad got Aspiration Pneumonia…spent a week in the hospital and was severly weakened. With slow rehab and excellent Physical Therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old most Doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no Neurolgist seemed able to help with. Then I came upon this theory in my countless internet searches:

    The Pulsatile Theory of Levadopa Administration:
    What does this mean? It means the Levadopa (L-Dopa or “Sinamet”) you take is in Big Chunks compared to the natural flow of a non Parkinsons person.
    IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa)IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE EFFECTS OF SINAMET…INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS AND DRUG FAILURE.

    I did this with my Dad and it really helped! Read on…

    What does it mean? It means that when you take a tablet or 2 of Sinamet…the sudden rise of LDopa or falling off is stressful, and over time produces Dyskinesias…

    So if for example you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you’d take just a a little BEFORE you normally would…and the second just a little AFTER you normally would…about 15 minutes apart may work (AGAIN…ASK YOUR NEUROLOGIST FIRST!)

    WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low….then the second tablet can later “Buoy” up the dose level, BUT avoiding a sharp spike.

    My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias and bad extended “off” periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart…
    HUGE DRAMATIC IMPROVEMENT….70%-80% BETTER IN ALL AREAS

    I am just writing this because NO Neurolgist advised me about this. IN FACT, they looked at my Dad…and shrugged their shoulders and said , “Well, 12 years with Parkinsons….and….what can you do?”

    I brought this idea to a great Neurolgist at the Veteran Administration in West Los Angeles and he helped me out line the dosing schedule.

    Though my father’s has it tough, at least this has eased his discomfort some…
    REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE TUNES THE SINAMET YOU ARE ALREADY TAKING…IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET…PERHAPS…
    Again Ask your Neurolgist…BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS..ASK QUESTIONS…BE RELENTLESS….OPTIMIZE YOU EXERCISE DIET AND SUPPLEMENTS (VITAMINS, ETC.)AND YOU’LL MAKE PROGRESS

    Good luck…I hope this helps someone….in the name of my Dad…Ed
    Love ya Dad…

    Steve

  2. I appreciate the time you’ve taken to share your experience/treatment! Thank you

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