Mr. Parkinson, An Update

032It’s been a while since my last update about life with Parkinson’s disease. As far as health is concerned, I’m doing well. My drugs are still effective; I walk 4 miles a day (with my trusted cane), meditate and stay as far away from stress (good and bad) as I can. However, I have noticed a slight tremor in my left hand as opposed to my main tremor in my right hand. There are some differences in its development for I remember all too well how my right hand started to shake. Though PD is mostly confined to one side of the body, it can develop in the adjacent side. My instinct tells me that the left hand will stay inconsequential as it is.

In September, I will enter a research clinic and do a 26 day clinical trial for the same drug I tested last fall. This will be the second phases of the study with improvements to the drug as a result of the first phase. The emphasis is to lower the side effects of Parkinson’s stalwart medication, ‘carbidopa-levodopa’. This is the top PD drug but after taking it for 5 years or so the side effects become enhanced and there is a notable uncontrollable physical consequence causing one to self-estimate dosages according to the severance of side effects.

In addition, a second emphasis is to make the drug last longer. I take it three time’s day, but it would be great if I only had to take it once in a 24 hours period.

I will have my laptop with me for the month so I’m planning on doing a lot of writing and sharing of what the day to day routine is like during a clinical trial.

067Frustration

My appointments with my neurologist in North Carolina was every 3 to 4 months. Each appointment cost $100. Considering how thorough he is with my examinations, I thought the fee was in line.  When I moved to St. Augustine, I knew that one of the top neurological centers for Parkinson’s is in Gainesville, Florida. So I called up and set up an appointment and they notified me that the fee per visit is $250. This to me is one colossal farce. What good is being the best if your patients can’t afford you? This was not unlike my learning curve on drug prices, a prescription can cost anywhere from $12 to $700 for a one-month supply… the same pill, the same dosage, the same doctor but different pharmacy’s. You’ve got to shop and compare prices. I’ve now decided that I will keep my neurologist in Raleigh and travel up to North Carolina every 4 months to see him until I can find another doctor close to home

Ignorance

It was bound to happen, but I had hoped it wouldn’t. I went to see a customer to give an estimate for work she requested. I wasn’t in the house for 5 minutes and she asked me to leave. So I left perplexed and then my phone rings and I answer. She was not aware that I own the company until she heard my voice. She had called to report me because she thought I’d been drinking. After apologizing profusely and I accepting, I arranged to go back. But why does it have to come to this? Parkinson’s is a double edge sword for it is a physical disability but also it affects cognitive thinking. So I chose my words wisely which may cause one to think I’m indifferent or I don’t care and this is what she noticed. I guess that is why I love to write, I can take as much time as I want to.

024In most cases, people are generous with their compassion; a slight smile, a bow of the head or coming right out to ask what is wrong. And the biggest change in attitude came from me. Before Parkinson’s I went around unaware or indifferent… I just didn’t see, I don’t mean with my eyes, I mean with my heart.

To find out more about my struggle with Parkinson’s decease please go to my page on PD at Parkinson’s Disease.

© 2015 JC

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JC

I was officially diagnosed with Parkinson’s disease on October 29, 2012. These are my thoughts on Parkinson's and a variety of subjects.

28 thoughts on “Mr. Parkinson, An Update”

  1. Glad to hear your heath is well and that the drugs are still effective. Wishing you all the best in your second phase of the drug trial. I just want to say, thank you, for your blog and sharing your thoughts, struggles and frustrations. I know so little about Parkinson’s and from your blog, I am learning things.

    Liked by 1 person

  2. I too am glad to hear your health is still relatively stable, JC. I look forward to reading about the drug trial, and of your experiences in the non-Parkinson’s world. I am acquainted with a sculptor whose Parkinson’s appears somewhat more advanced than yours, although he still keeps a studio in which he works as he can. He has become somewhat difficult to understand when he speaks, which is probably off-putting to those who are unaware of his illness. Your blog is a great help to those of us for whom “Parkinson’s” used to be just a word.

    Concerning the cost of your neurologist appointments and drugs, I take it you are too young for Medicare and Medicare Part D (the drug coverage). Is it possible to purchase better insurance than you now have, so the financial burden won’t be so heavy?

    Liked by 1 person

    1. Thank you so much for your comment and kind words! Yes, I fall into the cracks of our health care system especially because Florida didn’t sign up for the Medicaid​ expansion. And for my drugs, I got the cost down to $50 a month through Costco which is a remarkably​​ low price for PD medications. As long as I can work, I’m ok but I’m trying to get ready for the day I can’t.

      Liked by 1 person

  3. I always like to forget that in the States you have to pay to see a doctor even when you have such an illness as Parkinson’s. But that even the price of medicines differs depending on the pharmacy… how can those on small salaries afford to be ill?
    But asides from this small polemic, I am glad you are doing well, I look forward to hearing about your trial 🙂

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    1. Thank you for your comment! I really appreciate it. Yes, our health care system is seriously lacking. The pharmacies fall under the manufacturer prices, so prices can span across the board. Anyway thanks again. More to come!

      Liked by 1 person

  4. Thank you J.C. for this enlightening and may I say, uplifting report.
    How so you might say when you suffer such a serious illness.
    It comes in the sharing of Ignorance as you met it and how it resolved, I know how
    it must have hurt you and am glad you found a way to resolve matters with the customer.
    However, the most poignant to me comes with your statement that the biggest change of
    attitude came in you. I find that humbling and uplifting.

    Is this the time you found more depth and started to write. I guess so. Most good writers
    go through or are going through life changing pains and joys. It is your choice though to
    let this serious illness make you grow spiritually.

    Your 4 mile a day with the trusted cane sounds very fit and healthy.
    As to the stress I do understand you from first hand.
    I also look forward to hear from you during your drug trials.
    Bless

    Liked by 1 person

    1. Thank you for your thoughtful words. they are always welcomed!

      I use to keep a diary so I did write some. But it was right after my diagnosis when I saw a woman in a wheelchair and she was moving, weaving in and out of people like it was natural. I suddenly saw my illness in a whole other light. After reading an E-book about PD from someone who had been diagnosed 5 years before that was so hateful and full of self-pity, I decided to do a positive blog about Parkinson’s and it expanded from there. This is why I call it an unexpected muse.

      I’ve always been fascinated by religion and still am a student of Hinduism and Buddhism but with PD you must practise mindfulness in your speech, cognition and movements. From there it was Zen, Taoism, Native American and the basis of it all is Nature… Mother and Human nature.

      Anyway, I digress. I am looking forward to my clinical trial and my reporting project. 🙂 More post to come! Have a wonderful day!

      Wishing you Peace and Grace- JC

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  5. Your medical care in the US is so expensive, no wonder you balk at the wide difference in prices, but good your able to work around it.

    Discrimination , is the bane of our lives, the woman just assumed you were unfit, the to phone to complain, it doesn’t really matter that she apologised once the facts were put to her, but she judged you harshly, what if it wasn’t your company somebody could have been disciplined or fired over her complaint.

    You have showed more compassion by still keeping her as a client, good for you.

    Take care x

    Liked by 2 people

    1. At first I was just surprised that anyone could really think that way, almost blaming myself. But I quickly got over that… I just wanted to show her that her actions were wrong.

      Thanks for your comment!

      Liked by 2 people

  6. Glad you are doing well. I am diabetic and have to take medication every day for my diabetes. Fortunately in the UK diabetes means that I don’t have to pay for my prescriptions despite being in full time employment. It does seem wrong that people have to suffer due to lack of financial resources.
    Kevin

    Liked by 1 person

  7. Bravo for walking four miles daily! My fingers are crossed for the clinical trial. They really are. I am sending you positive, caring vibes for the very best outcome xxx

    Liked by 1 person

      1. Big hugs xx and sending you healing energy and I know this is a trial but I’m very glad you are here, that your words are here. And we read the as we appreciate you. Xx

        Liked by 1 person

    1. Thank you for your comment. I know it is interesting, like seeing for the first time. Being healthy is a good thing but it can make you self-absorbed. Not too long ago, I saw a woman in a wheelchair at Target. She was trying to get something from a top shelf and I went over and helped her. There were other people around who didn’t notice her at all. They weren’t purposely ignoring her, they just couldn’t see.

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  8. JC, thank you for sharing your experience. It is enlightening, and honest.

    A friend of mind at university is working on developing a glove that could help stabilise the hand tremors of Parkinson’s Disease with his GyroGear team. They are now improving the prototype into a final product thanks to the prize they gained from the F-Factor (attended by Simon Cowell, Google’s CEO and Linkedin’s founder). They have gained a lot of media coverage on BBC, the Guardian, MIT Technology Review.

    What they’re doing make me happy so I wrote an article about it on my blog and interviewed one of the lead engineer working on the glove. Please don’t hesitate to have a look. I think the more people hear about the glove and test it, the more impact they could have in designing the best product possible and reaching the right people.

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    1. Thank you for the information. Yesterday I read something about the glove and hadn’t had a chance to read more. What exciting news. I will definitely check out your blog and read up on it.

      Liked by 1 person

  9. Hi! Serendipity led me to your blog. I was going to write about April being PD Awareness month, which led me to think about TS Eliot (and it being the cruellest month), which led me to the word Shantih, which led me to your blog. In this post I find that you went to Gainsville… I did too! I was diagnosed in 2014, in Mexico, and was fortunate to have Dr. Michael Okun see me at the Movement Disorder Clinic. Now I opened a PD support group in New Port Richey, just north of Tampa and its blog, http://www.parkinsonsupportnpr.com Please visit, I’m new at blogging and input would be so welcome!

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    1. Hello, I’m so glad you found me. I was diagnosed in October of 2012. I was living in North Carolina at the same. I now live in St.Augustine. I will definitely look at your blog and follow you back so we can stay in touch. Thank,JC

      Like

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