A letter to my daughter about living life with Parkinson’s

Dear Out of Town Daughter,

One of the things we love about you is your ability to see below the surface and voice your concern about what you see.  While we were with you last weekend, I could hear in your voice how worried you are about my Parkinson’s Disease.  As the only one in the family who lives away from LA, you see me less frequently than your sisters do, which gives you a different perspective of changes over time.  I know it can be difficult to see your parents showing signs of aging.  I went through that with Grandma and you saw how difficult that was for me.

Let me assure you that most days I feel great.  In fact, the only reminder on those days that anything is wrong is the alarm on my Fitbit reminding me to take my meds.  My life is filled with activity, little of it modified because of PD.

The days I don’t feel so great I can usually trace overdoing it or to a bad night’s sleep.  Like most people with PD, I have difficulty sleeping through the night.  You know how you feel the next day when the baby has a bad night, waking you up several times during the night.  Look at my insomnia as having the same effect, except that I don’t bounce back quite as quickly as you do.

So what does it feel like to have Parkinson’s?  Some days, as I said, are fine.  I am fortunate in that I have a slowly progressing type of PD.  It started as Tremor Only, which is usually the best case scenario.  After 5 years, I finally started Sinimet, the magic pill for PD, which immediately calmed down my tremors.  My hand hardly ever shakes anymore.  My foot is more of a problem and usually acts up when I am driving.  Other bothersome symptoms can be constipation, stiffness and slowness of movement.  Oh yes, and that thing you keep mentioning – that I look stooped over.  I try to stand straight, and yoga really helps.  My Movement Disorders Speciaist (PD Neurologist) says my posture is fine.  When I am tired, I tend to hunch over more.  You or one of your sisters used to complain that I looked angry all of the time.  That is what they call the Parkinson’s Mask, or frozen face.  That has actually improved since I began the Sinimet.

One other interesting side effect is compulsive behavior.  It can take the form of excessive gambling, compulsive shopping and even game playing on the iPad.  The compulsive behavior is often attributed to some of the PD meds.  I don’t go near a casino and try to keep my shopping limited.  But I do play a lot of games on my iPad and it can be difficult to stop.  I am not sure what your father’s excuse is, he is not taking my meds as far as I know.  I think he just likes games.

You also asked about my memory, or cognitive behavior.  I have been participating in a study through the Alzheimer’s center at UCLA.  So far, I have passed the cognitive test twice with flying colors, scoring as a 30 year old!  One of the things that happens as we get older, is that it sometimes feels more difficult to retrieve things from memory.  Think about your brain as your computer.  As you have more things stored in your brain over time, it can take a little longer (milliseconds maybe) for your brain to find the information it is looking for.   So when I am trying to remember something, it might be buried in some remote part of my brain that is difficult to access.  When your computer’s memory is full, it gets slower, too.  It can take many more commands (and time) to get the info that you need.

You asked if anyone went with me to my appointments.  Since I am such an independent person, I never really thought about it.  As I told you, your father usually goes about once a year to check in.  He also participated in one of the studies with me last year and had to answer a lot of questions about me in private.  I have no idea what he said.  I never thought of asking your sisters to go with me, but it is probably a good idea that each of them goes once so that they can ask any questions they have.

I am not going to go into the scientific explanations of what Parkinson’s is.  There is a lot of literature out there that explains it much better than I can.  I will recommend some reading for you.  For years, the thinking has been that PD starts in an area of the brain called the Substantial Nigra, and that by the time you are symptomatic, you have lost more than 70% of the brain cells in that area .  Recent discoveries are now saying that it is a problem that starts in the gut.  If this is true, early detection will be easier, perhaps with a blood test.  Also, because it is difficult to cross the blood-brain barrier with medicines that can be effective, this is seen as very good news for developing better treatments.

So I am feeling hopeful.  I am hopeful that my disease will continue to progress very slowly.  I am hopeful that a definitive test will be found that can identify those with PD much sooner.  I am hopeful that new treatments will either cure or stop progression of PD. I want to dance at your children’s weddings and I am hopeful that the new direction that PD research is taking is going to give me that opportunity.

Love,
Mom

6 thoughts on “A letter to my daughter about living life with Parkinson’s

  1. Laurie Weitz

    Wonderful post Sharon! A mom can never stop being a mom and wanting to assure her children she is still the strong mother figure they look up to. You are definitely someone to be looked up to and a wonderful role model! Stay the strong woman you are.

    Like

  2. Peg Elefant

    Sharon,
    Thank you for yet another beautifully written, upfront, heartfelt post. Our across the street neighbor was just diagnosed with PD. I’ve shared some information from your blog with him, but Mel and his wife, Jane, are still like deer in headlights.

    Shabbat Shalom,

    Peg

    Peg Elefant
    Vice-Chair, National Leadership Department

    HADASSAH
    The Women’s Zionist Organization of America, Inc.
    3101 NW Garfield Ave.
    Corvallis, Oregon 97330
    T 541.740.3827
    hadassah.org

    Like

  3. Martha Berkett

    Wow, Sharon! You are such an inspiration! What a beautiful and reassuring letter to your daughter! I am very proud to be your friend and tennis buddy.

    Like

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