This is not a funny, normal, squirrelly post, but it was a moment of my life that I felt was so important share. Parkinson’s can be sad and I have promised myself with this blog that I will be open to sharing my pain without sugarcoating it… even though that sounds delicious. You have been warned.
A man came to therapy this week due to irritability that was leading him into periods of rage… we will call him “Jeff”. Jeff had sustained a traumatic brain injury eleven months ago. It was a car that swerved on the highway and ran into the back of his truck… he never saw it coming. He says, “It was like one moment, I was driving to work and the next thing I know… I’m this person who yells at my family and can’t even form a complete sentence.”
The Neurologist had educated Jeff that it could take a while to get back to feeling normal; he should expect emotional outbursts, headaches, cognitive impairment, and sleep disturbances. The only thing that would help is time. This was not good enough for Jeff. He was a scientist, he needed his brain to lecture and write.
As Jeff was venting his frustration and sadness about the man he used to be, I noticed that he was referring to himself in the third person. In a low tone, he said, “ Jeff didn’t get upset at his kids… Jeff never had trouble finding the right word… Jeff could write a lecture in his sleep.” Jeff had so much denial that he had created an unrealistic version of who he believed he should be.
It was obvious that he was trying so hard to be the old Jeff that he was in emotional warfare with himself. He was beating himself up because no matter what he did or how hard he tried, he couldn’t do the things that he used to be able to do before the car accident. He had never fully accepted his loss. When I pointed out that he was referring to himself in the third person, looking confused he says, “I am? I didn’t even know I was doing that.”
The remainder of the therapy session, I explained that the Jeff that he knew was gone and that he would never be that version of himself ever again. That the old Jeff wasn’t a separate identity, it was a part of who he is at this very moment. Furthermore, I explained that he could improve himself with time and determination, but he wasn’t capable of doing all the things that he used to do. Trying to be “perfect, like Jeff” was only going to cause him pain and confusion.
With a few tears, he says, “I feel like a weight has been lifted off my shoulders because now I don’t have that pressure to be the old me.” I told him that after today he could pick himself up and try to be the best version of himself. He was enough.
After therapy, I started to self-reflect and I was hit with a wave of sadness for the loss of the old Jeff. It triggered thoughts of my journey. It didn’t matter that Jeff had a brain injury and I have Parkinson’s disease… at some point, I had to come to the realization that I am not the person I used to be. The old Allison is gone and I will never be her again. But I have to say my current self is still pretty awesome. I have taken the pain and fear of losing who I was and used it to be my best self today. My life has improved by helping others and although at times I do feel sad, I can say with confidence… I am enough.
You are AWESOME
Thank you Dale!
I can not believe that it has been so many years since I met you. I never knew the “old” you but I was impressed with the NEW you and I think of you and your family often.
One of the rewards from my job, is meeting individuals such as yourself, who have really made an impact on the world. It really gives me perspective towards the job that I do.
Again, I never met the old you but am sure glad that I had the honor and opportunity to serve you and your family.
Thank you David!
Allison;
I am currently 58ys old, and I am one of the lucky ones that has what we today call Juvenile Onset Parkinson’s Disease (my first symptoms showed up way back in 9th grade 74/75 school year). So I have a rather unique perspective on the whole “old me vs the new me”….. It’s been so long now? that I can’t remember what it’s like to not have PD… As all my life it seems that I’ve been on a slow downward spiral, lose an ability here and there along the way… while striving to keep what I have, and always work to learn new things to replace the ones that have been lost.Let me say, that as I approach the end of my 50’s, the downward spiral seems to be getting faster, making it hard to pick up new skills along my way… I am so very thankful for DBS, as without it? I would be a complete basket case… instead? Although I can’t work anymore, I’m still getting out on my own, I can still drive, and above all? I can still go out and enjoy life… go out with the girls and just have fun….. I do realize that the day will come in the not to distant future that I won’t be able to do alot of things I enjoy now, so I’m working hard to find new things to enjoy….. for now?? I* will continue fighting to keep this insideous disease at bay… as well as keep enjoying all my future todays…
love
Brigitte
Thank you for sharing your story. Love how you know that the future is unknown, but you’re living for today! Bravo!
I love the current Allison… for who you are and all you do!!! Thanks for sharing this story of hope… love you, Allison!
Oh Thank you Carrie! Miss your smiling face! Love you!
I always love reading your posts. Thank you for the vulnerability and honesty but also your obvious strength. This is an excellent lesson for everyone, no matter what we may find ourselves trudging through. Your insights are monumental and refreshing. 🙂
Thank you for your comment Hannah!
Allison,
Another truly great post, your raw honesty and vulnerability about your life experience is truly inspirational. The world could use a lesson from you on vulnerability, it would definitely help solve some of the conflicts that are going on.
Personally speaking, since being a part of your Perky Parkie community, I have never met anyone as inspirational as you.
You are more then enough, you are perfect.
Cory
Thank you Cory… you’re so sweet!
I like to call the moment of diagnosis / recognition “Avalanche Day,” which mirrors the military term “Alive Day,” though I differentiate them to give the military term a separate respect. http://parkinsonsdan.blogspot.com/2017/07/surviving-avalanches-cory-richards.html
Here, like mountain climber Cory Richards (great videos on Youtube, BTW), he gets hit by a real avalanche and has to get out of it. Later, he finds he’s still in the ice. I’m glad you could help your client get out of the ice, even if it’s the first steps of many.
In what I wrote, it recommends a pair of books called Deep Survival and Surviving Survival (Laurence Gonzales). They should be available at your library. I don’t know him, but I wish I did (thus, I’m not advertising for him – these books changed my whole PD attitude). They talk about overcoming the odds, PTSD, and issues of the aftermath. I think in your profession, you would be able to find a lot of useful things in Surviving (if you only read 1)..
For more extreme PTSD type rage patients (it sounds like your story might reflect a prefrontal cortex injury), Achilles in Vietnam deals with helping war vets particularly, but from what I remember, it was a good read. I’m not sure if it goes into any issues of brain injury, but I bet it does. Your library should have that, too.
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Keep doing what you’re doing for parkies and other people who need help. As Ren Hoek would say, “You’re one of the good ones, man!”
I will check it out! Thank you for sharing what has worked for you.
Wow. This was so timely for me. I try to accept myself as a person with Parkinson’s. But part of me fights that idea. I think, “This wasn’t in the plan. This shouldn’t have happened to me. Things are supposed to work out.” Like you, Allison, I am trying to still work, because I need to, and want to. “It’s what I do,” as Ringo Starr said when asked why he did his recent your in his late 70s. I’m inspired by your still working. But all of us must modify activities, and make it ok. If we can’t work, we engage life in other ways.
I can’t help comparing myself to peers who don’t have Parkinson’s. I could say, “But they have other challenges,” which is often true, but PD stands out for me because it doesn’t get better (Can I have the flu please instead?). So, 7 1/2 years after diagnosis, I try to figure out what I can do – Things like where does my career go, can I travel as extensively as my spouse wants to, can I play basketball, what about hiking, etc.?Acceptance is a big idea, and your blog helps me move toward it. The best thing I have done lately is start Rock Steady Boxing. There we are a group of folks from the community fighting together, and engaging in positive efforts to slow progression. I also see a counselor. Onward toward acceptance, or at least tolerance! Your words help so much. Thank you. Solidarity forever.
Garrett
So happy to hear that you have a community at Rock Steady boxing! Acceptance can become easier when you see others doing it. Thank you for your comment!
I’ve always admired the wide range of topics that you’ve covered in your blog Allison. This topic was, to me, one that will stick with me for some time.
Your honesty, sensitivity and empathy came through, not only in the body of your ‘piece’ but also in your response to your subscribers.
I thank my fellow subscribers to your blog, for sharing their honest feelings, fears and concerns.
As our life changes while this unwelcome guest embeds itself into numerous aspects of our ‘new day’, I do believe there is little we can do other than be the best version of the ‘new me’.
Time, patience and acceptance have rounded the sharp corners of Living With PD for myself…
Thank you Shane, it’s people like you that encourage me to keep writing. You’ve always been my cheerleader, thank you for your support.
I never had the opportunity to meet the “old” Allison but I have had the pleasure to get to know the “new” Allison and am better for it. She continues to inspire me with her optimistic outlook on life and helps me deal with the challenges of being a PWP. Thanks Perky for all you do for me and for many others.
Thank you John! You’re comment just made my day!
Thank you for the honest approach to who you have become now. I still look back at the past 3 years and get so upset because I will never be the same person I once was. I used to lead the health, safety and environmental programs for a company located in CA , NY and NJ supporting over 400 employees making a great salary. I used to be an active volunteer firefighter in my community and helped friends with home re-wiring projects. Within 10 months my PD has progressed so fast that I could no longer speak or even write my name correctly or to take notes anymore. I was removed as an active FF and all my turnout gear was taken away. I can no longer tighten a screw, let alone try to hook up a 240-volts stove to a new outlet. It took a while and a lot of counseling to help me understand that I am not the same person I was 2 or even 15 years ago. I am becoming a new person with a lifelong challenge that is on a continual journey to discover my new talents that I have and realize that I was given more time each day to rest and to not worry that I can no longer be my previous self.
I even enjoy washing dishes now because the warm water helps ease the pain in my hands from PD.
It’s an insiring story of your determinaion not to give up. Plus, washing dishes is a skill! Maybe you can teach other Parkies how to keep their homes safe when challenged with Parkinson’s… just a thought. Thank you for your comment.
That’s very deep Allison. Goes right to our identity, doesn’t it. Are we a product of our medication, a victim of our Parkinson’s, a reduced personality or still the same person? I think we’re still the same but with different abilities. As you said so poignantly “it enough”. Different experiences but still “there” Thank you for helping be confront this reality. Also thanks to Jeff.. Casey Huisman, 11year a Parky. http://Www.parkinsonsomy..com
Thank you Casey. I like your way of thinking we are the same, but with different abilities.
Thank you for sharing this… it’s going straight to my heart & my parki’s brain…
I’ll try to be happy with me today … Véro
Good luck with your journey to happiness, even if it’s just for a day! Keep moving!
This is very timely for me! Thanks for your post. I need to pray about it!
Hopefully my post has helped you to learn how to love yourself and to get you through the difficult times.
I like the old me, and miss her. .it’s a mourning I think you have to go through Everything I l loved,included,physical Activities. I had Lots of endless energy. Not so much anymore . It’s a loss and a process.
It is a sad day when you realize your losing yourself.
As usual well said!! Our moments in time are to precious to waste on wishing for the old “you”, dance and enjoy this you!!
Enjoy you! Love it.
Thank you. I am slowly accepting who I am PWP. I am still having a hard time adjusting to who I thought or wished I would be this point in my life. I really need to accept my new journey to be free. I am glad I joined your blog email list.
Todd, acceptance is not easy. Happy to hear my blog helped!
Thank you for your wonderful message. I have had PD for nearly 17 years, at least that we know of, I am now 58 and I am often unsure of where life is taking me. Your message today was perfect. I have had two bad days in a row and feel somewhat of a renewal now. We just have to take life one day at a time and give it the best definition we can.
I’m happy to hear that you enjoyed my blog. Thanks for your comment.
As time goes by, 12 years from parkinson’s dg, I actually don’t remember the Old Original Me. Was there one?.
Absolutely awesome thank you❤️
Thank you!
Thank you! I needed this today, I was diagnosed with Parkinson’s when I was in my 30’s, I’m now 53, I get down on myself a lot for “being different” because I can’t do as much as I used to, I know I’m getting progressively worse and it frustrates and scares me, especially when I’m in my “off” times with medication.
Keep writing your blogs, it encourages me to know I’m not alone.
Thank you for your kind words Scott! Happy to hear you liked my blog!