(I did not write this but have the same experiences.)
There was a pivotal, yet somewhat inevitable crossroads juncture that I encountered in my Parkinson’s "journey." The culling of my social connections.
The enormity of the juggernaut diagnosis that I encountered led to a rude awakening and forced me to cut the proverbial wheat from the chafe. Although it was a bitter experience at the time, I am sincerely grateful for the clarity it brought.
Friendships before diagnosis
Prior to receiving the diagnosis of Parkinson’s disease, I willingly admit that I operated with a certain degree of naivety and complacency. I had cultivated a vibrant array of social connections and I was thus comfortably cocooned by a familiar and friendly family of folk.
For me, they were a fun-loving and eclectic community, comprised of my friends, my colleagues, and my family. They nourished and sustained me in a way that enabled me to flourish and thrive.
Losing relationships
I was in my 20s, young and carefree. Life was good. I was a gregarious, social animal seeking and thriving off the buzz and quiet comfort that social solidarity provides.
Somewhat naively, I interpreted and believed that the myriad of relationships around me were durable and robust. I felt they would prove to be life-long unions of commitment and friendship.
However, when my health deteriorated and I was no longer the independent and self-assured person I had been prior to Parkinson’s, I was shockingly greeted by an exodus in my social landscape.
Trying to grieve
At the time, this hurt. But I have since learned and accepted that this is a very common and normal occurrence for many people affected by chronic health conditions.
Admittedly, this unfortunate circumstance of events caused me much pain and grief in subsequent years after my diagnosis. Yet, at the time I was too busy trying to manage the magnitude of complex neurodegenerative symptoms that I had begun experiencing.
I was unable to fully process the true significance of the loss I had encountered. More importantly, unbeknownst to myself, I was forced to endure layers of grief and mourning.
The layers of loss
For me, being diagnosed with Parkinson’s disease resulted in a loss of:
Identity
Physical ability
Career
Financial autonomy
Community and connection
The terrain of my reality changed forever. Sadly, my carefully cultivated social connections were unable to withstand the seismic shock of the diagnosis.
So, very suddenly I found myself severely disabled and severely isolated. I severed about 90 percent of my social acquaintances around the time of being diagnosed.
The beauty of clarity
When tragedy befell me, I had 2 choices. Firstly, I could choose to have been burned, marred, and tarnished for the rest of my life by the unfortunate series of events.
Or alternatively, I could seek the hidden beauty (and wisdom) from the tragedy. Admittedly, the latter is the harder option, but it is the more viable, nurturing choice.
I was forced to experience a quasi-epiphany with the demise of my social connections. While mourning the loss of old friendships, I was also afforded the opportunity to re-evaluate and recalibrate what I valued and needed in my social unions.
In my experience, it proved to be a hidden blessing because the ultimate death and demise of my relationships forced me to be more resilient and wise.
The lessons it taught me
The culling of my connections provided me with pivotal life lessons. This experience enabled me to recognize the impermanence of life. Everything changes. I knew this from my years teaching Buddhism to secondary school students. But reading words in a textbook can never compare to experiencing something first-hand.
It taught me that when fostering future social connections, it was imperative to prioritize quality over quantity. For instance, 10 flaky, unreliable friends would never be comparable to 1 solid, dependable, and fervently loyal friend.
Valuing your own company
Also, my social connections, post-diagnosis must be worthy of my time and effort. I perceive my words, time, and company as precious now. More so than before. Things that are easy for others are not necessarily easy for me.
Therefore, the effort I expend in relationships must be worth it. The diagnosis of disability that I deal with daily means that I have a limited, finite number of resources at my disposal. I cannot afford to be frivolous with my remaining dopamine levels.
So, I now perceive most social interactions to be an investment of my commodities of time and effort. Thus, only the best of my social company receives the best of me now.parkinsonsdisease.net/livin...
Written by
beehive23
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Thank you.!it’s fine that the words are not your own. The heart and thoughts are. Very true, and heartening. Gratitude for what we have that is of value.
Sorry, this was somewhat confusing. Who wrote this really, and was there something u are trying to obtain or accomplish? I didn't quite get if there was a point, feel like I might be a little dense on this one.
loss of friendship post pd diagnosis..posted here because itts a pd forum?????? and having pd for 20 yrs i could identify with it........dont worry i ll limit my posts in fake world from now on.
Whether you are the person who first wrote this please note that the narrative is factual it fits my story this week I was wondering in the past i was getting 50 calls from friends daily but since became sick it dried up very isolated and dejected
Wow, this has been my experience. Interesting, I read once that PD people become less social. But my experience was as this person wrote, my “friends” haven’t been able to deal with my diagnosis. I get tired, I can’t party into the night and have a “best 4 hours” in the day from 11 to 3, so catch me then and I am somewhat what as before. My friends need to deal with the new me or I don’t see them anymore. Ultimately, I am down to the best of my friends and the rest, sayonara.
Yes, this is my experience too. My “friends” were mostly acquaintances, not true friends, but I did enjoy getting out and socializing. They are a socially active, outgoing group and I was shy and introverted to start with. As my voice got softer, I couldn’t tell if people didn’t respond to me because I said something uninteresting or if they didn’t hear me. And now, as my speech difficulties have gotten worse, I have given up trying and am feeling really isolated and alone.
Beautifully written and expressed beehive23! I, for one, appreciate your sharing these feelings and experiences, of dealing with PD, and how it has affected your friendships, and life, post diagnosis. Importantly, we are commiserating within a forum, of sharing life experiences, with a degenerative disorder, that is complicated, in it’s affect in our daily lives. When friends, or former friends, turn away, and shun us, because of our incurable condition, because we have uncontrollable shakes, and/or movements, perhaps, or we walk funny, like maybe a zombie or drunk person, at times, it is a rejection that is hard to accept, and deal with! To me, sometimes, this forum is like a safe haven, where I can discuss different aspects, of living with PD, with others, who are saddled with the same diagnosis. It is good when we can express our thoughts, and feelings, with other ‘victims’ of Parkinson’s! Thank you for your contributions, and supportive commentary. Wishing you Happy Holidays!
I am King David. Yes, the one who slew Goliath with just a pebble and a sling. As a young shepherd boy, I was chosen by God and anointed by Samuel to be the future king of Israel. After I won many battles in King Saul’s army, King Saul became jealous and tried to kill me. Instead of retaliating, I escaped to a cave… the cave of Adullam (I Samuel 22). I find it gratifying that you would name your gym in my honor as it does appear that we may have shared a similar dopamine deficiency in my later life
In the cave, I told God about my troubles and asked for mercy (Psalm 142). “There is no one who is concerned for me… no one cares for my soul… You are my refuge... Deliver me from my persecutors, for they are too strong for me… Bring my soul out of prison, that I may give thanks to your name.”
Others who were in distress joined me in the cave. As their commander, I taught them to depend on God alone. God equipped us with skills that would help us lead the nation of Israel. His Guidance will be helpful to you.
My Legacy
I reigned as King of Israel for 40 years, unifying the tribes of Israel and establishing Jerusalem as its capital. However, my battle career ended when I began developing symptoms that some modern-day physicians say are compatible with Parkinson’s. You see, I was almost killed by a youthful offspring of Goliath. After they rescued me from near death, my men immediately declared that my days on the battlefield were over (2nd Samuel 21:15-22).
I felt that I was de-throned – yes, dethroned— and I became depressed and despondent. Some of you have had forced retirement from Parkinson’s and may have had similar sentiment. However, I soon realized that my most important contribution to God’s kingdom was yet to come. I was inspired to write the message of hope… and hope is what God offers you. Looking back, my most important legacy was not the defeat of Goliath but my written legacy—writings I collected and developed after Parkinson’s disease.
Now 3000 years later, PD may have presented an untimely detour in your life but despair and depression must give way to hope and faith. Make your days count and follow our Shepherd. You may well find a new career.
“The Lord is my shepherd… he leadeth me… he restores my Parkinsonian soul.”
Just as God had a plan for my life, He has a purpose for each of you. He can use your experiences in all phases of life to help others. You can have a lasting impact on those around us through sharing the love of Yahweh.
Thank you that was very inspiring, the Psalms are a constant source of comfort to me now, I read them and recieve strength and encouragement from them every day.
Don’t you find it paradoxical that we have to be so sensitive about some cultural mores and “neo-normal values” (dare not be accused of being sexist, racist, antisemitic, homophobic, anti-Buddhist, anti-climate change) while vile derogatory pronouncements against Monotheism seem so acceptable? Systemic cognitive dissonance..
Ah yes, Christians. So persecuted. Especially in the United States, where you are part of the overwhelming majority. Must be tough.
Your equivalences are largely false, by the way. Sex, race and sexual preference are traits that are (almost entirely) not chosen and consequently it would be irrational to criticise people for having them. Climate change is actually a real thing.
Perhaps don't go proselytizing on a health forum if you don't want negative feedback.
Such is life. Unfortunately be it PD, cancer, heart issues, challenging health conditions change our situation. We are no longer as able to continue as before. Naturally the friends whom we used to share activities no longer have the common interests that used to glue us together. They are also at a loss as to how to comfort you and help you. We grieve and also become more insular, isolated and lost.
The challenge is ours alone.
In the midst of it all, remember there is a friend who sticks closer than a brother and loves you with an everlasting love. You are His beloved always❤️. You are always precious and He holds you fast in His embrace. He is always there to cheer you on and support you , encourage you 24/7. You are never alone. He knows your heart. He is only a whisper away and he gave his life for you. His name is Jesus❤️
Thank you for sharing that, beehive. I was pretty sure it was something you were kind enough to share from elsewhere. I had just been thinking about the same topic. A couple of my friends have sort of disappeared. One said it would just be so hard to watch. Isn’t that lovely? Worse on me LOL. And the other person is so funny because they just refuse to acknowledge it.Or it’s very odd because our symptoms somehow become the same. It’s like I can’t seem to top this person. I mean with symptoms and everything else. Someday I’m just going to screech “Do not compare this to having a sore muscle.“ Actually it’s so irritating but I think I understand also. It is a lot for friends to deal with. But sometimes they don’t think or stop to think that it’s worse for us. Oh well! Thanks again.
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Michael Quaglia - Radio DJ at Radioparkies.com and founder of “2 Mikes” Parkinsons podcast
A chronological model for the pathogenesis of PD
I came across this article.
What is the role of mitochondrial dysfunction in Parkinson’s disease?
