Episode 1: We Have Parkinson's

[@pulchritudinouscatastrophe]

I love this. I’m 36 with YOPD, diagnosed at 27.

[@joshuashoulders9738]

God bless you

[@irisrodriguez-cavallo9386]

🎉awesome podcast!

[@thesecretlifeofparkinsons]

Yay, thank you!

[@carolynsole4651]

My husband has PD diagnosed at 71, 3 years ago. We live in Queensland Australia and Dubai. The gym set up sounds fantastic. Our son owns a gym so we go there and he has a personal trainer once a week here when in Dubai but no one seems to know in Qld. I am going to take this back and hopefully get it set up at home. Thank you so much for talking about all of this. My husband is still in part denial and hard work. I need help too to deal with his verbal aggressiveness due to frustration.

[@joedrake3449]

Well done folks.

[@robertlidmarck9043]

Cheers from Sweden (I am a 57 year old male with YOPD diagnosed in 2014), great initiative from you guys and I will be following this podcast/channel with interest! /Robert

[@ocrodger]

Hey guys, listening from Tustin California. Very informative. Thank you so much. Diagnosed in 2021, September and 65 years old. Will continue watching your podcast. Unfortunately I had a reaction to the covid-19 vaccine shot that's giving me brain fog which adds to my Parkinson's disease diagnosis. Be well guys. Rodger

[@nukejets]

I just got a preliminary diagnosis of Lewy Body Dementia. I can relate to your discussion. I'm currently on my 4th neurologist and the last two are movement specialists. The first was a US Navy doc who got transferred shortly after I began getting treatment. The second brushed off my concerns and said that I had essential tremor. The 3rd, a movement specialist said I was suffering from depression (which is true). It's taken almost 5 years to get a diagnosis. When I did my own research, I found that I have all the common symptoms of LBD but the doctors just can't see it. Perhaps my newest doc will be the one to make the diagnosis more definitive. Thanks for sharing your stories.

[@thesecretlifeofparkinsons]

It's amazing how long a diagnosis can take. Sorry it has taken so long for you.

[@charleslobaido8403]

Thanks Brian and Jessica 😊 It's amazing how so many people have different symptoms.

[@lalittl]

Please keep doing this good work! We need these resources 🙏🏼

[@wkolau5355]

Greetings from Queensland Australia. Very wonderful sharing and a lot of valuable information. I am a 58 yo male with YOPD first diagnosed in 2006. I am following your channel. Now I am considering DBS surgery as an option for my treatment.

[@thesecretlifeofparkinsons]

Good luck to you! Not sure if you saw all our DBS videos, but you can check them out here: kzbin.info/www/bejne/qXeZeKV3abCMlas

[@nicholasfuller6358]

I was diagnosed with young onset Parkinson’s on 3-28-2023. I underwent a Dat scan that was ordered by my primary neurologist and it showed that my dopamine levels were extremely low especially on my right side. I have tremors and no arm swing on my left side and rigid limbs. I was put onto Carbidopa/Levodopa and it’s been almost 2 weeks and I notice that my symptoms are a lot better when I take my levodopa and I can tell when it’s starting to wear off because my stiffness and my tremors are worse and my walking is slowed down considerably but once I’ve taken my pill and In about 20 minutes I’m back to normal.

[@thesecretlifeofparkinsons]

Wow! You're a newbie! Glad to hear the medicine is working for you. You'll feel an even better effect in a few more weeks. Since you are so new, the biggest recommendation I have for you is to find a Parkinson's community near you. People you can see daily/weekly (usually an exercise class). Socializing and exercising with other people with PD is a game changer.

[@nicholasfuller6358]

@@thesecretlifeofparkinsons I’m currently trying to find a YOPD support group but I’m having a little bit of difficulty finding one. I’m on the Seacoast of New Hampshire. I’ve tried googling it but not finding much information. I don’t see my movement specialist until July. I’m hoping that he has some good resources for me.

[@jcmullins3871]

Diagnosed in 1986 when I was 17 . Turning 55 next week. I have had it 38 years

[@brandonhealy7158]

That is so young! I hope you’re ok. I’m 23 now and have been experiencing PD symptoms since I was 22, and ET symptoms since I was 15. I’m going to make a doctor’s appointment soon as I’m deteriorating quite quickly for my age. Is the deterioration meant to be slower the younger you get it? My back is so bad already and I’ve only had PD symptoms for a year.

[@fadedgallipolirblx275]

I wish my husband had seen your videos before he passed a month ago. He had YOPD, diagnosed at 36, and died at 40. I know that everything you are both saying is everything he went through. I'm glad that you are doing this for other PD patients, so they can learn more and see that they're not the only ones dealing with this terrible disease.

[@thesecretlifeofparkinsons]

I’m so sorry for your loss. Thank you for your kind words.

[@Pingaheimer]

I'm so sorry, R.I.P to your husband, what was his name?

[@Zerobar78.]

This is good information. PD is so tricky to pin down and it’s a process to get diagnosed properly. It’s interesting hearing you Jessica talk about you self diagnosing to an extent, pretty much the opposite way I went about it ignoring my symptoms despite my coworkers concerns until a family member hit me with it directly that I might have PD. Subscribing!

[@thesecretlifeofparkinsons]

The diagnosis journey is difficult! I hope you are finding relief with medications and/or exercise.

[@RodolfoSavica]

Congratulations guys, really an amazing iniziative. Everything that can help change prespectives in YOPD is amazing! Thanks again and happy to help

[@thesecretlifeofparkinsons]

Thank you!!

[@auroramatera7555]

Hello Jessica & Bryan, listening from Canada. Very informative. Diagnosed in May 2019. I’m 59 years old now. Will continue watching your podcast. I have rough time on rainy days………..any recommendations? Aurora ❤

[@thesecretlifeofparkinsons]

I actually take Zoloft to help with the depressed states I was in. Not sure if that is an option for you.

[@auroramatera7555]

Hello Jessica, I was on Zoloft at age 29 for anxiety and then I was able to stop in 2017. I now take 1/2 of clonozapam before bedtime. Helps to relax and fall asleep for 3 1/2.

[@jnm.624]

Brian ... I spent years in orthopedic offices! I went to a MDS and was shocked but I made the appointment so how could I argue? In the back of my mind I knew. The things brought up in this 1st podcast are amazing.

[@StaverMarilyn]

I so appreciate you both! 💕

[@maneeshajoshi1502]

Hi Jessica, Maneesha here from Pune India. I am a PD patient since last seven years. Like to get knowledge about the disease. Your podcast is a good gesture and I already subscribed. Thanks for presenting this series.

[@nikhilnoronha2450]

My dad has Parkinson’s since 2017 But only exercise can cure This message came from India Noronhas

[@nicksteeb]

Jessica did you have action tremors or resting tremors as your first symptom? I'm going in for a datscan next week. I have action tremors all on my right side with movement of wrist, elbow, shoulder, ankle. Super nervous.

[@thesecretlifeofparkinsons]

I experience my tremors when I'm at rest. I believe action tremor is usually associated with essential tremor. Do you have other symptoms?

[@nicksteeb]

@@thesecretlifeofparkinsons my finger tapping can be difficult when stressed especially when doing it in front of a doctor. Gets a little more difficult after about 10 seconds. In the morning when I first wake up I don't have too much difficulty. MDS at Cleveland Clinic felt mild rigidity in my arm. My gait is still normal. FYI I'm also in Ohio .

[@thesecretlifeofparkinsons]

Luckily there are a lot of great resources in Ohio! Here's a list 5kforjk.org/exercise-and-community/ There is more but these are the big ones I know of.

[@LorilynnCampbell]

I was diagnosed late 1998 but my neurologist first said it's nothing

[@LorilynnCampbell]

My legs are very weak as is not the only thing I have. Also renauds ,Fibromylga.,copd

[@LifewithParkinsons]

Thanks for starting this podcast. Is there a way to send you guys an email?

[@thesecretlifeofparkinsons]

[e-mail]

[@thesecretlifeofparkinsons]

Thanks for listening!