Words of Wisdom from a 4 year old

Why does Grandma walk so silly? Why does her head bobble when she walks?

my 4 year old grandson, Evan

Sometimes we do not notice our symptoms, we are so used to living with them. Sometimes it takes someone else, even a 4 year old, to point out to us that yes, when we suspect that changes are occuring, it is actually happening and is not just a figment of our imagination.

My grandson’s statement was so funny that I found that I was laughing more than crying about it. So I asked Mr. Twitchy, who is usually quite observant, if he noticed my head bobbing when I walk. No, he had not noticed it. But he had noticed that my posture was not as good as it should be. And that my tremor, especially in my right foot, has increased. That one I was aware of, because I use my right foot in driving and it sometimes does not calm down until the second dose of Sinemet late in the morning.

So what is a Parkie to do?????

I knew that my meds were not as effective as they were a year ago. I have been on the same daytime dose of Sinimet for 5 1/2 years, which is actually pretty amazing. Lately I have noticed that I am having more wearing-off time, and my tremor becomes more pronounced. The worst thing of all is that my tennis game has completely fallen apart.

So does this mean that I am falling apart? Not necessarily. Symptoms come and go, depending on many things, such as stress, sleep, amount of exercise, etc. The last 4 months have been extremely stressful, so it is not a surprise that I am shakier. What can I do to reduce the stress, get more sleep and get back to what is “normal” for me?

Yeah, yeah. I know what I should be doing. But do I do it? Of course not. I do exercise a lot. My diet could be better. I get bored meditating. I much prefer playing games on my iPad. Instead of relaxing, I look for more things to do. That is just how I am. I have a feeling that many other Parkies are the same way. We need to be busy. We find it hard to say no. We don’t just do things, we go all out. There is no moderation here – it is all or none!

So after 10 1/2 years of living with my BFF, Parkinson’s, I can’t complain. I can still keep up with the 4 year old and his 1 year old sister most of the time. Their 3 and 6 year old cousins were in LA last month, and we had a great time with all 4 of them together, even with my silly walk and my head bobbing.

Twitchy Woman

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2 responses to “Words of Wisdom from a 4 year old”

  1. Dear Sharon,
    Just had the attached paper on Michael Wiese’s teaching style in his video linked to Goodbye Parkinson’s Hello Life (GPHL) accepted for publication in New Community an Australian social wellbeing journal from Melbourne, Victoria. It won’t be available in published form for some time but I wanted to get the attached draft copy to you to continue adding to the voices of resistant PD warriors in their vigorous or oblique forms. I notice you mention GPHL as helpful in its support for dancing as a way of holding back PD symptoms.

    Following my comment above, I am beginning to think that PD warriors can differ according to their personalities and styles. You and a few of your beloved friends (and pretty revved up, vigorous and ‘youngish’ battle ready warriors!!!!) seem to take a strong and active approach and report pretty good results. The ‘Buddhist’ style of Michael Wiese seems more oblique but no doubt helpful for those it helps the same way as your vigorous workouts with boxing and other strenuous exercises etc etc helps you and yours.

    Anyway the love and joy that crackles in your blog is pretty infectious. I laughed with joy when you had the chutzpa to post a film of yourself attempted a strong obstacle course across the water in the pool quite some months ago. I was not a little envious and then I remembered that you are a woman of action and considerable younger than your Australian admirer completing his 80th year in October. I then also remembered that you were not attempting to break a record or to beat other competitors. You, living vigorously with more than a decade of PD, want the taste of what seemed to be a peak wacky challenge purely for the fun of it.

    Perhaps this is where you and Michael’s ‘joyful, fun’ approaches seem closer than the ‘heroic’ acts of PD people engaging in endurance projects. The compassionate public awareness and generous research funds which they raise are tremendously helpful but for you and me with the condition and its degenerative potential, what we are working with is long term constant relatively small stuff but so helpful for us. You will see in the attached paper where I quote your ‘anecdotal report’ on the diminution of your friend’s symptoms once she got back into her vigorous exercise regime and your confidence that the same will happen to you when you are free from your current indispositions and rejoin her at the gym.
    You mention that you have felt an increase in the tremors in your ‘accelerator’ leg which are a manageable nuisance which you expect to limit when you return to your full fitness regime. Michael Weise as he works his way through his exercises that, coupled with the dancing that it leads to, has been so helpful, comes to one called arms flip flop and his tremor which had been virtually absent caught his right hand visibly. He was able to turn the tremor off by some compensatory action but it validates his point that the mindful dancing regime is not a cure but a way to live in the best way one can and to resist premature surrender.
    With love and admiration

    Acting Director
    Australian Centre for Inclusive and Convivial Backyard Civilisation (ACI&CBC)
    10 Alexander Ave
    SA 5034
    Mob: 0408 857 339

    1. Hi Peter, so good to hear from you. Thanks as always for YOUR enthusiasm. What ever you attached was not there. Please send it to me at twitchywoman18@gmail.com. Sending you hugs from across the Pacific (can’t call it the Pond?)

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.