We have Parkinson’s

I’m writing this post in the coffee shop in Auckland Hospital while waiting to see my neuropsychiatrist as part of my assessment for DBS and as you do before these appointments I have been reflecting on how I am feeling and what’s been going on in my head. To be honest the bad days out number the good at the moment. I suppose that is to be expected – after all my doctors are hardly likely to be considering invasive brain surgery if I was doing ok, but that doesn’t make it any easier.

Someone recently asked me what was the worst thing about having Parkinson’s at 39 years old. Is it the dystonia, which curls my feet and twists my arms and neck, contorting my body like a performer from some grotesque parody of Cirque du Soleil? Or is it the pain which feels like hot pokers rammed into my hands and feet, burning so intensely that one of the only ways to gain any relief is to use ice packs to numb the senses. Could it be the unpredictable wearing off of my meds, leaving me rigid and stuck and yet perversely shaking as my tremor kicks into top gear. Broken sleep with nightmares so vivid I sometimes wake terrified and silently screaming? Writhing dyskinesia? Constipation? An inability to think more than one step ahead? The list goes on and on and on.

No. The very worst thing about having Parkinson’s at 39 years old is the terrible effects that my illness is having on my family, especially my wife and kids, who are now 5 and 3 respectively. The pain I feel watching them suffer and worry about me is sometimes unbearable. Of course, as a husband and father all you want to do is to protect them from and to fix the problem.  But when something that is happening to you IS the problem, and when that problem is incurable and progressively gets worse and worse, the sense of helplessness is acute.

I see the pain my family are in and I am wracked with guilt and anger, not at them or myself but at this greedy insidious devil which is stripping me of my ability to do pretty much everything, much much faster than I ever understood was possible. I feel sick inside knowing that I am the cause of their torment – the anxiety, the worry, the struggle to understand why daddy can’t do things.

The only thing I can do is to try my best to keep as well as I can, to take my pills and drug infusion, to exercise and to participate as best I can in family life.

I saw an interview where Michael J Fox was asked about DBS surgery and his response was that the air wasn’t supposed to touch your brain, and as it already had touched his in similar brain surgery, he wasn’t keen to try it unless it could cure him completely. I appreciate the risks that invasive brain surgery holds but realistically I can’t see that I have any choice. If it can relieve my symptoms better than my current drug therapy then I have to try it. As much as for my family’s sake as my own. Because I don’t have Parkinson’s. We have Parkinson’s.

As much as I appreciate all the love and support I am shown, please spare a thought for them, as I am sure sometimes it is worse for them than me.

 

 

Comments
5 Responses to “We have Parkinson’s”
  1. Darrin says:

    Hello first time here i have parkisons for 2 years im 32 now the ledopa dosent work for me or the other 5 medicens they have tried so what have i done nothing i have been just dealing with it and it is rough i have changed my diet less caffien more fruits vegitables and trying to walk when i can as this has made no diffrence at all im still stiff still shakey butt one thing has changed i am less depresed and not imbaresed when i go to the store i smile more and have hope in my heart for the first time in 2 years thanks fir listing to my story.Darrin in Tennessee..

  2. Andrew Dunn says:

    AJ, this is indeed the stark reality of Parkinson’s. You have created a vivid word picture of yr situation;it’s an emotional read, and I feel for you and the family / whanau. The DBS may be an option that works for you, and hold up the relentless progression of the thing. Yr mind is rightly focussed on yr family too, and the support from friends and PSNZ essential at different times. This blog helping us all to work with you in yr journey too.

  3. Henrietta says:

    Can’t tell you enough times how happy we are to always be there for you and for Lynn and the little ones. Believe me when I tell you we are so frustrated by our inability to do anything to directly help in restoring you to good health and that the only way we can show you how much we care is by being there, for you, for the kids, and if by us having the kids anytime, helps you, then we are most definitely there for you anytime at all. Remember we love you all and we support you all the way.
    Not only do we support you all the way, we are so proud of you and what you are doing and how you are coping. You are truly amazing and an inspiration to your fellow mankind, both with and without the bloody disease!!

  4. Emmz says:

    Aj….. God I’m in tears. I can’t imagine the heartbreak from your side but I am sure that your children, wife and us all look past what you can’t do and embrace what you can. Your determination, strength of character, courage and sense of humour in the face of the biggest adversity any of us can imagine is humbling. The fact that you can smile, crack (dirty) jokes, play, laugh and share time with us all is most important. Knowing you love and are loved….. We love L, N and I – we are family and because of that not one of us faces battles alone.
    xx

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Parkinson's New Zealand has an amazing Field Officer service which provides education, information and helps people make informed decisions about living with Parkinson’s. I am proud to support their work.

WPC 2013