Time for a change

The last few weeks have flown by.  As I wrote last week, a dear friend passed away after a very brief (5 weeks) illness that left us stunned and numb.  Mr. Twitchy and I got home from visiting her in Arizona on Monday, and left again on Thursday for a wedding in Richmond, VA, and then to Chicago on Sunday to visit our grandchildren there.  Home in LA the following Thursday and thankfully had the chance to hug our one-month old granddaughter as soon as we arrived.  That was definitely just what the we needed since we were off to Phoenix again on Saturday for the memorial service on Sunday.  Looking forward to being home all summer, and staying off of airplanes.

Trying to keep it all together has been a challenge.  Wacky schedules. On and off planes and long drives.  Not enough sleep or exercise.  Meals, good and bad, and not necessarily nutritious.  This is not a good thing for anyone, much less those of us with chronic illnesses.   We are both exhausted.  So of course, my tremor has come back at inopportune moments.   Fortunately that is the worst of my symptoms, but the fact that it has come back again  to some degree is very disconcerting.  I was hoping that I could continue doing well for years.  I have to get back on track with exercise, which seems to bring more benefit than anything else.

When speaking to my therapist last month about the return of some symptoms after 41/2 blissful years on Sinimet, I said I felt like I was falling off a cliff.  He described it differently, that it has actually been a slow change, but suddenly enough of a change to be noticeable.  Kind of like when the PD symptoms first showed up 10 years ago. Whatever it is, I don’t like it.

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Don’t fall off the cliff!

So it is time to do something about it.  Fortunately, several other big commitments have come to an end and I no longer have those stressors.  I need to look at my diet and make positive changes, increase my exercise – both the amount and intensity, and find ways to relax that do not include playing games on my phone.  I have done it before, so I can do it again.   Maybe I will even try to be a PD Warrior!  Anyone want to join me?

2 thoughts on “Time for a change

  1. Peter Willis

    Dear Sharon,
    I was very impressed by your writing about your catch-up strategy after more than ten years of pretty well controlled PD using Sinemet plus a vigorous exercise regime and helpful social outreach through your blog and related stuff . I predict that there will be a lot of interest in your next decade as a Parkinson’s Warrior as you continue to push boundaries and report on outcomes with your usual humour and insight.
    I’ve started to wonder whether there might be two elements in exercise with PD. One is the importance of robust exercise. The Parkinson’s Warrior talk is a lot about strong committed exercise and that is something you seem to know a lot about and indeed to pursue with vigour. The second is a kind of Zen detachment from needing to achieve optimum outcome in every PD minimisation work out . Michael Wiese, the publisher of Alex Kerten’s book Goodbye Parkinson’s Hello Life – has a video of his exercise routine as preliminary warmup before dancing which he does in his stunning back garden overlooking the ocean in Cornwall in England. While he demonstrates his exercises, he talks about his discovery of Alex Kerten’s free dance method which he integrate with his lengthy connection with eastern spirituality. One of the messages in his talk on the video is to listen to his body and maximise times when he is ‘on’ and flow with his body when it is ‘off’ sometimes postponing his exercise for a while and returning to it when he discerns that he is ready.

    There is a strong feeling among some PD writers that you crash through and push as hard as you can even against strong resistance from your inner self. This is different from Wiese’s attentive and somewhat detached approach to his regime but there are not many reports on this approach compared to the scientific studies around PD warrior. I am intuitively attracted to Wiese’s approach but there has been little follow up written. He himself had kept copious notes (we have corresponded!) but feels the market is saturated with PD books.

    I remember your enthusiastic reporting on your boxing and related exercise. I got the feeling that most of the time you were raring to go and that most of the time you experienced a feeling of wellbeing from quite vigorous engagement. The fact that you ‘tell things as they are’ means that as you return to your more intense exercise regime you will provide occasional reports on your PD warrior program and it is those that are so helpful.

    I am hoping that you and Mr. Twitchy will still be able to visit Israel and catch up with Kertens. I notice that his gym has thick padded mats and that in the small classes he runs the participants begin their session bouncing large coloured balls to each other as they move in a circle. In another clip a man whose wife reported that he used to be very stiff with a pronounced shuffle, is seen to shed his stiffness as he bounces around even rolling on the padded mats as he follows the music. One of the commentators referred to Alex as a Dancing Warrior.
    Thanks as usual for the kindness of your blog.
    Love to Mr. Twitchy
    Peter

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  2. Pingback: As Parkinson’s Progresses | Parkinson's Women

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