Has Parkinson’s changed the way you experience the world?

[Alan M]

Hi Mary Beth:  Your dad sounds  like an extraordinary bloke!  I wish I were more like him.  What I have noticed is:

• I cry at the drop of a hat.  The ABC News cast showed this wee one in the Ukraine being led by the hand amidst all the current turmoil of impending war.  Her tears absolutely crushed my heart.  I wept for her.  Years ago this wouldn’t have phased me much.  I guess one might call this enhanced empathy.
• I have much deeper compassion for other PwP.  I learned the other day that a mate’s uncle was diagnosed recently.  I felt extremely sad for him.  Sadness sucks.
• I’m a therapist — I mean, my career is in MH therapy.  I find myself often thinking hw unfair life is to many.  I guess when it comes down to it, I feel ripped off having to live with Parkinson’s in the final stage of my life.  I even catch myself getting angry at  life at times — strange…
• PD has stolen my motivation for most things.  Not sure why… but I know it’s gone for the most part.  Even things that used to enthrall me now seem to matter a lot less.

I’ll end my post here.  Maybe as my life changes more and more, I can become more like your father Mary Beth.  Please relay my warmest regards to him for me, OK?

[Mary Beth Skylis]

Alan, thank you so much for your kind message. I will certainly do that. I’ve noticed increased empathy in my dad, too. And I hadn’t really thought about that as a potential symptom of Parkinson’s. Have you always been extra empathetic?

Warmly,

Mary Beth

[Alan M]

Mary Beth, truth is, I’m on the Autistic Spectrum (ASpie).  We’re always told by NT’s that PwA were never known to be empathic.  Maybe I (along with many other Spectrumites) are exceptions to the rule — what do you reckon?

Alan

[Desmond Veale]

Hello to everyone.

I have fond that many things which ere special in my life before Parkinson’s seem to be of less importance and is in the past. I see myself as a different person to who and what I was. I just live in the now. (Does this makes sense/

Des (Australia)

[Karla Burkhart]

Things that used to be important are no longer. However, life seems very rich and I have a new set of friends who understand. That is my Rock Steady Boxing group. We chat and chat and are always ready for support and advice. Other friends are good but these friends understand the basic needs and problems.
My family is dear and tries to be supportive but my sweet husband attends all functions with me and really seems to know what I need. He even boxes with me and it is really beneficial to him. I don’t think he would exercise otherwise.

[RIchard]

You asked how PD has changed the way I experience the world, since being diagnosed with PD.  The answer is quite a lot in very profound ways that I never would have suspected.

When I was first diagnosed, I was stunned… I mean I was living a pretty healthy lifestyle, not overweight , exercising regularly… how could I get an incurable disease (not lethal, but still).  And then the symptoms stared piling on (involuntary tremors, runny nose, urinary urgency, balance issues, voice, and handwriting changes, etc.)  I had lots of Dr appointments, my work was more difficult to get through, and I really started worrying about my fate.  Instead of being man of the house, I felt I would be bedridden requiring constant care, etc.

So, I started doing some research and found out that there was a whole community spearheaded by the Michael J Foxx (back to the future) Foundation.  I also found out that I had a rather mild case of the disease compared to some folks, but I was still wondering what I was going to do with myself until one day I was discussing this with my wife (who, lucky for me is the most wonderful woman in the world) lamenting that I wasn’t as strong as I used to be and it was harder to fix thing around the house, when she said:  “Look, I want you to just take care of me and I’ll take care of the rest.”

Could this work?  Could it be that simple? So, we decided to try it.  I started thinking about what I needed to do.  “Taking Care Of” could mean a lot of things.  My intuition told me that what was really most important was to always be there for her no matter what, to be her mental and emotional rock, a shelter from every storm. There were some light things like washing the dishes, making the coffee…but it was the emotional support that was clearly the most important.  And yes, I tell her how much I love her, appreciate all the care you give them, how happy they  make you.  And I do this morning noon and night.  And when I say that I’ll  be there for them-I always keep your word.

And you know what.  This was something that I was really good at.  And what started out as an idea became my mission.  And this is the way I want to show up.  And rather than feeling these tasks as a burden, they really made me feel happy and content.  And I started being hyper aware and understanding of other people’s struggles.  So, I decided to expand my mission to include my whole family.  Sometimes all I needed to do was to compassionately listen to them talking out an issue they had or thanking them for something they had done (e.g., making dinner at a family gathering.)  I am still learning, but so far, my love for these people has grown stronger and so has their love for me.

I know that I am not the first person to discover these insights (this is what the Dali Lama preaches) but I never imagined how profoundly personal its effects would be.

And my PD…It has just become a fact of life, and it does not control me.  Yes, I still have symptoms, but I think about them differently.  Instead of feeling stigmatized with a shuffling gate or involuntary tremors, I feel we are heroes struggling against a medical foe and not giving up.  And surprisingly some of my PD symptoms have gotten less or disappeared.  I attribute this to meditation, exercise, but mostly from the joy and meaning I derive from taking care of my family.  And despite my physical weakness and unsteadiness of gait, I have never felt stronger and have never been happier in my whole life.

Now know that some of you may be reading this (including my former self) and think that I must be a special kind of person to be able to do this. But you would be mistaken.  All it takes is the intention and putting your self in someone else’s shoes.  Appreciate your blessings and thank everyone for everything