Alone with Parkinsons

‘I am afraid it’s bad news. You have been diagnosed with Parkinsons Disease’

alone parkinsons

Those words still send tremors though me. I remember the feeling very clearly, an out of body type experience. Rather like watching a TV show where someone, who looks and sounds a lot like yourself, has been told some bad news and you wonder how the writers will continue the story line and when they will write the amazing recovery. Then suddenly that little soapy bubble you have been watching turns out to be your own documentary and it is very very real and you now have to deal with this all by yourself.

All of the above is true, it is exactly how I felt but one very vital part of the statement is completely wrong. Not just a bit wrong, but way out there, driving down the wrong side of the motorway at 100 mph eating a cheeseburger and drinking Jagermeister through a straw, totally wrrong. It’s a curse of mine to be right so much of the time, so much so, that when I finally get something wrong it comes as a bit of a surprise, but I have to admit that the feeling of being alone was an error and misjudgement in my thinking. Mistakes need to righted.

So here is my list of apologies for the earlier statement of being on my own and my attempt to put things right.

I am sorry Parkinsons  Nurse, you have been great

I am sorry doctor, you have listened when I needed you to.

I am sorry Parkinsons friends, you understand don’t you.

I am sorry colleagues you have all continued to ridicule me in a friendly way

I am sorry friends, you too, have found ways to ignore Parkinsons and continue to see ME

I am sorry family, my brother, sister and all the kids, I should have trusted your support.

I am sorry people who I meet, you are all brilliant and everyday you surprise me with extra help in my coming to terms with PD

I am sorry to my lovely wife to be, of course she is there for me, caring, supporting, laughing and crying with me.Little-Box-Man-58_large

Alone with Parkinsons? No, not ever. What begins to dawn on my very thick head is that this chronic disease affects all those mentioned above. Granted, it is in varying degrees, but it does. Those closest to  me have had to learn just as much about the disease as me. They will have the same worries about the future and have had the added degree of watching someone they love change the way they he moves  and lose dexterity slowly but surely. No sir, I am not alone with Parkinsons and, alas, Parkinsons is far from alone with me.

So if we are in this together then this tells me one thing. We are one hell of a team and we are going to win, we are unbeatable and together we have a chance.

Alone I am beat.

I am not alone!

So thats all good then!

not alone

Slainte Mhath

John

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5 Comments Add yours

  1. prewitt1970 says:

    It’s a hard lesson to learn and you’ve spoken to it so well here. I find myself falling into that “alone”
    Trap far to often, thank you for this very needed reminder.
    Sincerely
    Benjamin
    Dx 11/4/11
    Yopd

    1. Jonners1965 says:

      It’s so easy to forget its not just you on so many levels

  2. Fiona Wiltshire says:

    Mr MacPhee…happy to keep gently teasing you. ;0) I only hope that in similar circumstances I will be as positive and brave as you!

  3. Much like the old saying, “It takes a village to raise a child”— It takes a team to deal with PD. I think we all find PD to be a lonely experience, but much easier to deal with when we have support. I am truly thankful for those that wait patiently while I search for words, or remind me to speak up, or know when to let me nap, or hold my hand when it shakes, or …

    Dx May 2008.

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