I was going to a party last weekend to celebrate my girlfriend Gina’s mother’s 91st birthday. Nonna, as we call her, was full of smiles and hugs. The party was hosted at a beautiful home in Orange County and lots of people I had yet to meet. But before I got to socializing, I was drawn in by the smell of pizza… yes, I still have my sense of smell although my sniffer isn’t as powerful as it was prior to Parkinson’s.
Drawn in by the garlic and Mozzarella tang, I found my way to the kitchen grabbed a slice, and with no shame, began stuffing my face like I was competing at a pie eating contest. I was so involved with this slice of nefarious gluten that I hadn’t even noticed the lady who sat down in the seat next to me.
She asks me, “Are you Gina’s friend who writes the Parkinson’s blog?” With pizza still in my mouth, I was caught off guard and took a hard swallow. I try to smile and say “Yes I am.” fighting the urge to lick olive oil off my fingers. I continue, “I am the Perky Parkie.” She goes on to tell me that her mother, Edna who lives in Georgia and was diagnosed with Parkinson’s disease over 13 years ago reads my blog. Did you catch that? A woman, who lives across the Country, reads my blog and shares my website with her daughter who just coincidentally is friends with my friend Gina. What a serendipitous encounter.
It really is a small world. This is a perfect reason why I created the Perky Parkie Blog in the first place. Feeling alone after my diagnosis, I was inundated with negative information and fear of the unknown. I wanted to find a space where I can share my journey with Parkinson’s the good and the bad, but with a sense of lightheartedness. Doom and gloom need not apply here.
Being active in the Parkinson’s community has given me the chance to hear many tales of love and inspiration. We become connected when we talk about this disease’s impact on our lives. When Edna, in Georgia, mentioned to her daughter (Jessica) that she was reading my blog, she started the ball rolling and connecting those that wouldn’t have met in our normal day-to-day.
I guess what I’m saying, is by just starting these conversations, Edna in Georgia, you have planted a seed in which roots grow and spread out reaching more people. Just like my new friend Jessica and I have done.
Does anyone else feel the power of sharing your Parkinson’s story?
Thank you for sharing your positive and uplifting outlook on life with Parkinson’s through your Blog. It was one of the first Blogs that I came across when I was diagnosed almost 5 years ago ( 5years ago seems impossible!) I have turned to your site time and again; I just wanted to say how much I appreciate you sharing your journey! Now ( after 5 years and having difficulties w/ a co-worker as well as some of my symptoms ramping up a bit,) I am encouraged again by your most recent article- you never fail! It seems that here where I live there is very little support – as in groups, exercise, etc. Locally it is nearby in Chicago. I live a short distance away in Indiana; however, traffic and lack of public transportation seem to make it a journey just to go to my 6 month neuro appt.! The few classes and support groups I have found don’t jive with my work schedule – they are always during the times I am working or again – transportation – I am tired by the time I get off and traffic to get to a nearby town is horrendous at the evening time offered. I really would like to get involved more and bring some group Parkinson’s resources to my area.Time to try! Connection is the key! Thank you for all you do – your light does shine through!
Hi Jackie,
I’m happy to hear that my blog has inspired you to find activities you can get involved with. It’s not easy to find the time, especially while you are trying to hold a job. Thanks for the comment!
Hi Perky. I am Johnny from Long Beach CA. I was diagnosed with in PD in 2013.I just came across your blog. I try to have a positive attitude about my condition but sometimes its hard. It seems as though you have to time some activities to how severe the tremors are at any certain time. But at such times I remind myself that it’s only Parkinsons. It could be alot worse. I could have M.S. or ALS or a brain tumor. All of which are a death sentence. I watched my sister-inlaw die from ALS. Absolutely horrible! So I try to make jokes about P.D. If you need a martini James Bond style, “shaken not stirrred” Then I’m your guy. Keep up the good work.
– Johnny
I have found such strength in having a world wide PD family and am grateful for the technology which allows that to happen.
I have a wonderful husband, children, parents, friends…etc…who are the foundation of my support system; but no amount of support from them truly compares with the support from those who can relate, firsthand, to what you are experiencing.
Thank you for sharing your life with all of us Allison. You have been the person I have looked up to since I was diagnosed in my 20s. On my hardest days I choose something to read from your blog as a reminder that I’m not alone and to gain the perspective and strength I need to get through the day.
Lots of love.
Hello Meg,
Your kind words. You made my day! Thanks for sharing.
Hi! From Florida. I feel better after reading your blogs 🍕🍔😜we aren’t alone..
Hello Florida!
Allison,
Spreading encourage to all of us whose been reading your blog and you are a hero to me. Sending love from my heart!!👧🏻💕
Hi Heather,
Thank you for your sweet comment!
Great post! I am glad you made the connection with Jessica and Edna. I have long enjoyed your blog and being part of the Perky Parkie community. Being in the community reminds me that I am not the only one facing this disease. Rather, there are thousands of us and we need the support of one another. For that to happen we need to find one another. Your blog helps do that!
I can absolutely identify with all that you have said in your post.. I felt fearful, devastated and a whole bunch of emotions I don’t think I can even name. Totally overwhelmed would probably describe it best. I had both my parents with Parkinson’s. I often referred to it as ‘the family curse’. My best coping mechanism and therapy has been my blog and reading blogs of others who are affected too. Together we can give each other strength, a sense of belonging and friendship through our connections.
I can abolutely identify with all that you have said in your post. I started my Blog http://www.parkiesandme.com soon after my diagnosis in 2020. I felt fearful, devastated and a whole bunch of emotions I don’t think I can even name. Totally overwhelmed would probably describe it best. I had both my parents with Parkinson’s. I often referred to it as ‘the family curse’. My best coping mechanism and therapy has been my blog and reading blogs of others who are affected too. Together we can give each other strength, a sense of belonging and friendship through our connections.
Like ripples in a pond, you reach many people just when they need it.
What a sweet story! Loved it!!!
I love reading your blog. Since my diagnosis a little over six years ago, I am continually amazed by the breath and depth of the Parkinson’s community. I’ve done advocacy in Washington with the MJFF, walked in Moving Days, co-facilitated PD Self and participated in numerous HAPS activities in Houston when we lived there. Through these activities and social media, I find myself sharing thoughts, concerns and empathy with people from all over the U.S. and some other countries. I will probably never meet most of these people in person, but the connections feel deeper than many long term relationships. Thank you from Williamsburg, Virginia for allowing us to tag along on your journey.
Hi Fred,
It’s one of the many things that PD has given me… appreciation of friendships I’ve had the honor to have. Thank you.
Love this story and just shared it on my personal Facebook page and let people know you will be our guest speaker on 3/14.
Hi Becky,
Looking forward to it!