Twitchy Woman: My Adventures with Parkinson's

I’m the fittest I’ve ever been, healthiest, started a coaching business, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses.  Jackie P.

Several years ago, on a Thanksgiving blog post, I wrote about things to be thankful for with PD.   Many of the “things to be thankful for” were lighthearted.  But some readers did not get it.  One person responded “how could anything good come from this terrible disease”.  For me, a positive attitude has helped me get through the past 9 years while living with Parkinson’s.

Recently, on a PD Facebook page, someone asked for members of the group to share something positive that they have done, learned or discovered since they were diagnosed with PD.  For many people, it may be difficult to see anything positive about the diagnosis, such as that person I mentioned.  However, the response to her question was amazing.

There were many wonderful, honest answers, some of which I will share with you.  Very few answers were the typical “shake and bake” answers.  The readers dug deep and there were some common threads throughout.

Probably the most important thing is the friendships that have been made because of Parkinson’s.   Having friends who understand your life with PD is priceless.  These are people who understand how you are feeling, without even having to ask.

Coming in a close second is being more aware of what is important in their lives and making changes appropriately.  That may mean spending more time with grandchildren, doing things on their bucket list, setting boundaries and learning to say “no”.

Finally,  quite a few mentioned having more confidence in many ways, to speak up when with friends, at work, in public places.  They are able to challenge themselves and try new things.

I think that having Parkinson’s allows us to see the world differently.  It also gives us the chance to reinvent ourselves, over and over again, as the disease progresses.  Many of us are doing things now that we never would have imagined doing. Why not try that boxing class and see what the buzz is all about?  You have a sudden urge to play an instrument?  Go ahead and do it.  It is good for your brain.  Same for learning a new language.  Learning new skills can help reconnect some of the neural pathways in your brain that have been damaged by PD.  The most interesting thing to me is that so many of us have found new interests, often showing creativity in the arts where there was none before.  Is it the added dopamine that we are taking? Or the lack of dopamine?

Because many of us are no longer working, we now have more time to do those things we have always wanted to do.  Mr. Twitchy and I have been traveling a lot, mostly because we have the time, but more importantly, a future with PD is so uncertain that we want to get in as much adventure as we can now, while we can enjoy it to the fullest.

So here are some of the answers in response to the question.  Do you see yourself in any of these?  Can you think of other good things that have happened because you have Parkinson’s?

• I have met so many wonderful people, challenged myself and achieved things I would never have done before, I enjoy and appreciate the little things in life so much more, I live in the moment and know that life can still be good! 😀
• I would say it’s a wake-up call and forces one to face facts about their life and take stock. Time to make changes and let go of some things and nurture others. Also since exercise is the one real medicine that can change the course of this, a lot of the future is in our control. Get moving! 🚴‍♀️
• Appreciate each second and reaching out to Face Book friends; priceless
• I no longer moan about emptying the dishwasher; just appreciate the fact that I still can.
• I know I’ve become more empathetic, sympathetic, more caring, more appreciative, more loving, to name a few. You don’t get it, until you get it!
• I have become more patient with other people and have been grateful when they are patient with me. I started a support group and joined Rock Steady boxing🥊 and through those two groups have developed deep friendships and gotten to know people that I can’t imagine my life without. I also found out what a caring man my husband is. I am also learning to depend more on God.
• For myself I go to the Delay the Disease exercise class and have met 6 wonderful ladies and we stay after class and talk about everything good or bad in our lives. We also go out to lunch and a movie every 2 weeks. I feel so much better about my life since going to this class.
•  We don’t get as many wrinkles since we don’t have all the facial movements and  if someone makes you mad, you can spill something on them and just blame it on your Parkinson’s..LOL!!
• I am a retired RN. Trust me loss of sense of smell can be a blessing in a hospital setting. Not a blessing when baking brownies.
• It has pushed me to not be so shy in talking in front of others as 4 years ago I started a PD support group in our Community as there was none And so I thought, Yes I can try this! So glad I did! Also My art has become a real blessing!
• Learned be in the now and to get the most out of every experience.
• I’ve learned to set boundaries with people in my life, not take on too much, take care of myself so that I can be the best mom and wife I can be. I’ve also learned to love myself more and honor where I am every day. And I don’t sweat the small stuff anymore!
• I have learned to FINALLY and unequivocally stop putting up with other people’s BS, no matter who they are, even if it means banning them from my life. Ain’t nobody got time for that crap!!  😀
• Learned not to take anything for granted..be confident and for the first time in my life love myself instead of not liking myself.
•  I created a cartoon to deal with this journey or situation. I’m striving to be a positive deviant. Hope to share some of the cartoons.
• Finally getting the proper diagnosis was such a relief for me and my husband. I started to think I was crazy. It also reminds me to make as many happy memories with my family, while I can.
• It has shown me that I am a fighter. Stronger than I thought. I figured I can curl up in a ball and check out of life, or stand up and fight it. I’ve put my energy into now helping other veterans with illnesses that also developed post combat deployment. For me, it’s a healthy way to redirect my anger at the disease and the military and turn it into a positive. But don’t get me wrong, I still have crappy days…just a bit fewer😊  
• Telling my story and the complete reinvention of myself!

  

  Speaking up for myself and not to sweat the little things. Allie T. – see photo

• I’ve learned not to put off tomorrow, what I can do today! Traveling and making memories with my family and friends. Learning not to worry about tomorrow, just take care of today. Strength doesn’t just happen, you choose it!! You ladies are proof! ❤️
• First, all the wonderful people I met at the World Parkinson Congress in Portland in 2016 as well as those in my local support group. Secondly, creating a new life in retirement as I will launch a PD website and blog this summer.
•  Learned to text with my left hand! 😀
•  Oops, forgot! Became an athlete (astonishing to this couch potato)😀   ⛹🏻‍♀️ 
• Having everyone tell me I am an inspiration to them. Before I was diagnosed I was average and now I’m a warrior. It’s a strange feeling but it fuels my fire. I am stronger than I ever realized.   
•  Where do I start? 6 years of living and doing so many things I would not have done. I’m the fittest I’ve ever been, healthiest, started a coaching business, become part of several charity fund raisers, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses. 🌹🌹🌹
• I’ve learnt how to do radio shows from my home and that has lead to doing a community radio training course and now I have a co-announcer spot on the oldest grooviest avant- guard community fm station in Australia.
  https://www.mixcloud.com/…/radioshow-dj-madonna-from…/