Episode 12: The Journey of a Young Onset Parkinson's woman
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- เผยแพร่เมื่อ 23 มี.ค. 2022
- The Secret Life of PD: In this episode, our special guest, Samantha Anderson, shares her diagnosis journey. As a 36-year-old Young-onset Parkinson's patient, Samantha has fears of what Parkinson's will bring to her future, but instead of constantly focusing on "what might happen", she decided to start "living in the present".
Check out other episodes here: / @thesecretlifeofparkin...
So glad I found this, new journey with YOPD. When the struggle is real I just Keep breathing and say I am a badass as I breathe in and exhale that PD !
I heard about this podcast from a friend. I have a different non curable disease but the issues and feelings I go thru are much the same. Wonderfull podcast. I look forward to the next one.
Hi Sam....I think of you often and so proud of the woman you have become. You are always in my prayers kiddo. Loved this prodcast! It helped me understand it more. Hugs♥️
I am 32 with presentation in my 20s. Your podcast is such a great resource for me!
Thank you! I hope you are feeling strong!
Great job 👍
I have to admit that sometimes these stories kinda irritate me and make me jealous. year to get a diagnosis is very, very lucky. I’m 36, and my first symptoms started at 29. I had all the cardinal symptoms and family history of PD, and was still put through the ringer of tests and passed between 6 neurologists before the Mayo Clinic finally diagnosed me. I have had doctors tell me that I had a mental disorder simply because I didn’t “look sick”. I’m happy you were able to get a diagnosis so early, but there are so many of us that haven’t had that kind of luck. I’m nearing the end of the “honeymoon” period. Please enjoy the early years (I didn’t and worried myself through them). Maybe feature some people who have had a rougher time-give some of the reality since so many people have so many different experiences.
I hear ya! I think many of us have similar stories (I just spoke to one woman who was just diagnosed but symptomatic for 10 years!). It is frustrating and those were hard times. It's definitely something we can talk about, but I think even more importantly, I'd love to get out in front of the Neuro community and try to understand why this happens so often. I'm speaking at a conference next month and I'm going to bring up this very issue. But it also goes back to no definitive test exists. So much needs to be done!
I concur. We know our bodies best and being dismissed over and over simply because the signs don't present DURING your appointment or other symptoms are invisible should not mean you are left to deteriorate until the diagnosis becomes easy/obvious. The stress associated with being dismissed and the delay in treatment really exacerbates the downward spiral. It is the opposite of "do no harm."
Kudos to you Samantha. That took alot of courage to get behind the mic I'm sure. I know it would me. Thank you all :)
Love you Sammy!
Your strength is admirable!!
I wish people would tell us their symptoms! My daughter has a lot of the symptoms but no dr will pay attention to us would be great if I had some comparisons!
Hey. I often make sure I don’t watch videos or read about Parkinson’s because it makes it all too real. I do talk about the disease and I think about it most of the time of course, but listening to others talk about it is frightening for some reason. I like your touch so I subscribed and will try to watch more of the videos. Thank you for making this. I know how much work is involved. Diagnosed 4 years ago at 45.
I totally agree. Sometimes I find myself thinking or talking too much about it and it scares me. But then I sit back and realize at 3 years in, I'm doing all the things I can do to slow the progression and I still feel good. It's hard not to think 20 years down the road, but I'm just grateful that it's not taking everything away at warp speed. Being young, we have the benefit (I guess it depends on which way you look at that), of it progressing at a slower rate. Thanks for tuning in! Glad you enjoy it. And that is exactly what we were going for - educate in a way that brings awareness and comfort but doesn't scare us.
@@thesecretlifeofparkinsons You are doing a great job. Keep it up!
Thank you for the great videos. I have severe pain in the forearm and slowness. I have been on CL but the symptoms are often there. I currently have my insurance through my spouse. But, if he is laid off, I will be in bad shape.
Do you happen to know where I could find resource about looking into the long term insurance?
My MDS diagnosed me over zoom in November 2021.
Hi. I am from India.
Firstly big thank you for doing this.
I really need to connect with you for PD (young onset )
Please let me know how to be in touch