"I was just diagnosed with young-onset Parkinson's."

I remember when I was first diagnosed, I googled, "I was just diagnosed with young-onset Parkinson's disease". This past weekend at a Michael J Fox event in Columbus, OH, the PDIQ + You, I met a lot of newly diagnosed and it reminded me of that time so I thought I'd share some thoughts for those who are new.

[@dinapawlow1622]

We were blindsided by the diagnosis. Totally floored. 9 years later, still a bit in shock. I don’t think you ever get over it.

[@carolbyrne4572]

Thank you so much Jess for all you do. I'm 2 years into my diagnosis and still a sponge, soaking up as much positive information that I can. Appreciate your vunerability over the past few podcasts. Sending everyone in this amazing community a hug from Australia xx

[@thesecretlifeofparkinsons]

Finding the positive information is important. There is a lot of negative out there. Stay positive, be social, and exercise - good luck to you!

[@kendrapatterson4629]

really appreciate the vulnerability of you doing this live content 💛

[@nancilee53]

and in these last 30 second...❤I love how real you are...u keep me moving jess

[@thesecretlifeofparkinsons]

Haha! Thanks for including my “last 30 seconds”! I can’t figure out if I should continue that as a closure to each episode. Thoughts? Brian makes fun of it all the time…especially because it’s always longer than 30 seconds.

[@kathrynevans3835]

My husband was diagnosed about a month ago. Your podcast has given me a lot of information. And hope. Thank you.

[@tomrio9914]

Travel now. My grandma had YOPD before meds existed. I was diagnosed three years ago. I now know I had symptoms but just undiagnosed. Thanks for showing us strength and perspective.

[@selviennaidoo1214]

Thanks sweetheart god bless you

[@snailo9650]

Thank you for this video, I'm getting a lot out of your podcast and videos. Best wishes from the UK 😊

[@tamarahargens3]

Thank you 😊

[@thesecretlifeofparkinsons]

Welcome!

[@angelakindon9839]

Thanks….i needed this!

[@thesecretlifeofparkinsons]

Glad it was helpful!

[@StaverMarilyn]

I appreciate you ⚘️

[@MikeMercury]

thank you so much for sharing

[@JRusk56]

You are unique and wonderful. I know that doesn't make you feel much better or make it all right. What you have is tough and it's not fair. I have been praying for you, not because prayer is a magic potion. Prayer helps me care about you more. I don't know what else to say right now. I really wish you well. Try singing. I saw one show that claimed singing helped alleviate the symptoms. I will be praying for you.

[@patrickkearney1577]

I have had PD for 31 years, dx at 35. There are specific PD exercise programmes but these can be hard to find. Well worth the effort. Also try learning a musical instrument. Helps in very many ways. I was never a musician but now play, rather poorly, about 30 different instruments. My top recommendations are any drum, fretless string instrument (eg cello or bass guitar) and keyboard synth. Taking on challenging tasks in a controlled and fun environment will help in coping with everyday life.

[@thesecretlifeofparkinsons]

Wow! 31 years! That's amazing! Love the musical instrument idea. I'll have to look into that.

[@bigdog62362]

Thank you.😊

[@StaverMarilyn]

So good Jess!

[@thesecretlifeofparkinsons]

Thanks!

[@tracyedwards5048]

I have been diagnosed for 10 years and I have just started to really suffer and it is affecting my mental health and my physical health no longer being able to walk safely I feel my life is being taken away from me bit by bit

[@steviesvideos319]

Ive had two G.Ps tell me they think I may have parkinsons, I have my first neurologist appointment on September 27th. , its interesting the iceberg graphic of 10% of symptoms being visible and 90% underwater. This is exactly the same as tourette and autism which I both have... People are quick to make judgement based on what their eyes see.. I try to keep active, which is Challenging as i have several ruptured discs in my spine...so I do what I can, , I was struggling emotionally for a while until I saw advice from an old guy who said don't focus on what your life used to be like befre PD...focus on what u can do from day to day. , that really helped me

[@thesecretlifeofparkinsons]

Glad to hear it helped. And for me, just realizing that the emotional struggle was because of the disease - the disease messes with more than just our physical being - for whatever reason, that helped me cope with it better.

[@haninshuaib7289]

I been stiff for more than 3 years now and lately I start to loose my balance. I have a huge feeling that it’s Parkinson’s (I hope it’s not 😢) I’m waiting for my movements disorder specialist appointment. I’m scared I’m mad but I still have hope and faith in god ❤️ praying for you and for all of who suffering with this awful disease

[@thesecretlifeofparkinsons]

I hope whatever you hear from the doctor, that you can find relief or an answer soon. I know what it feels like to be stiff and rigid. After I started on medication, I haven't felt it like I did in those days (5-7 years ago). So at least I know for Parkinson's, the medication has helped me. and exercise! Good luck to you!

[@MAP4LIFEInstitute-MAPSHOW]

I was just thinking of changing our statement "There is no cure..." to "There is a cure for PD, we just haven't found it yet." What do you think?

[@thesecretlifeofparkinsons]

I really like that!

[@zoeydean-cl1sn]

I'm from the uk, diagnosed at 32 now 37 I have 3 children ❤

[@thesecretlifeofparkinsons]

Welcome!

[@richardchandler3820]

My wife was just diagnosed with Young onset she is 49 years old and she is extremely Levodopa sensitive and it causes her to have severe Dyskinesia. It has interfered with everything she tries to do on a daily basis. The doctors have changed her dosage, she tried other medications such as Rytary and that was a nightmare for her so now she is back on the Levodopa. She hasn’t had a full year yet from being diagnosed and her team of doctors are suggesting that she considers DBS ! Soon , very soon in order for her to have quality of life.

[@thesecretlifeofparkinsons]

I haven't heard of Levodopa sensitivity. I'm so sorry to hear that. I would think DBS would help because she wouldn't have to take the medication but benefit from the device. We have a lot of episodes on patients going through DBS. Check out our DBS playlist to learn more. Good luck to you guys.

[@thesecretlifeofparkinsons]

I just found this article. www.elsevier.es/en-revista-neurologia-english-edition--495-articulo-intolerance-dopaminergic-medication-deep-brain-S2173580820302005

[@richardchandler3820]

@@thesecretlifeofparkinsons Thank you so much for your response and a huge thank you for the link. Great information.

[@carolynthornton6875]

Trying .... still scary.

[@thesecretlifeofparkinsons]

It is. I know. I'm really not sure how to shift the newly diagnosed mindset. I feel like there is nothing anyone could have told me back then that would change how I felt in the early stages. It's just one of those things that now (4 years post-diagnosis) I wish I could tell my 37 year old self, it will be ok. With the right medication, exercise and reducing stress, you'll feel better at 41 then you did at 35, 36, 37 years old (when my symptoms started). Good luck to you.

[@AtasiGuin]

I'm 27 nd my kid just 5 months very painful

[@thesecretlifeofparkinsons]

So sorry to hear that - you are so young! There is a group that Richelle Flanagan started that you might want to check out. www.mymovesmatter.com/ It's for women with PD (of all ages and stages)

[@StaverMarilyn]

I will Pray for you 💖

[@AS-jb2zi]

Are you going to have DBS eventually?

[@thesecretlifeofparkinsons]

I talked to my Neuro about it and it's always an option, but not needed right now. So we'll see!

[@gwynne127]

what are Parkinsons exercises?

[@thesecretlifeofparkinsons]

There are a lot! But when I think of Parkinson's exercises, I concentrate on big movements, focus on strengthening the core and glutes, balance, voice exercises, and anything cardio. Just make sure you do something you enjoy!

[@davea5794]

I'm 53. Was diagnosed at age 46. Had symptoms for probably a decade prior to diagnosis. Once my tremor began in my right hand, I started researching possible causes and as I started reading about other symptoms of Parkinson's, I got scared, because I had so many of them. So, my primary care doctor sent me to a neurologist who sent me to a movement disorder specialist. By that time it wasn't even a surprise when he told me "You have Young Onset Parkinson's."

[@thesecretlifeofparkinsons]

I felt the same way. I knew it before I went to the MDS

[@jindysumal9170]

I m going through the process of being diagnosed with Parkinson’s at age 56 . I m curious to know if the medications prescribed for Parkinson’s are effective to get you back to a normal state of functioning ? By the way Jessica your podcast has been very helpful in learning about issues surrounding Parkinson’s disease . Thank you for all your hard work and commitment on this front !

[@davea5794]

@@jindysumal9170 Medication has worked well for me, so far. Cabidopa/Levodopa helps a lot, but has become less effective and my dosage has increased to the point where I'm having dyskinesia. Be careful with Mirapex (Pramipexole). It can cause hallucinations and obsessive/compulsive behaviors. My doctor had to reduce my dosage of that one. I'm probably going to get DBS done next year.

[@isaaclee3322]

Did they do a DATScan to confirm?

[@davea5794]

@@isaaclee3322 DaTscan wasn't needed. My movement disorder specialist said they only use a DaTscans if there aren't enough symptoms present to make a diagnosis. A good MDS should be able to diagnose most cases with a thorough examination. If that isn't enough they can prescribe carbidopa-levodopa. If that helps then it's parkinson's.

[@paps69shed]

Hi Jessica. I'm 48 and I had a datscan following a few symptoms and got diagnosed about 2 years ago with mild Parkinson disorder. I spoke again to my neurologist about 8 months ago where he offered me treatment. I refused the treatment as as I was about to start a load of cancer drugs for a recurrence in melanoma. For the most part I'm fine, bit of leg drag. slurred speech, horse voice (especially on the phone) lots of rigidity and occasional dexterity problems in my hands. However I do have times where I just seem to fall off a cliff (like I have in the past few days.) I had been stressing over fixing an expensive repair job on my van. My hands were working reasonably well so gave the job ago myself. 7 hours later, in the cold and sniffing oil rich exhaust fumes I eventually got done.. Van still not working arrrrhhhhh Anyway woke up next morning and I can barely walk. Spacial awareness all over the place, cannot coordinate my legs. masses of vertigo and speech slurring. I guess I must have used up my dopamine reserves trying to fix my pain in the A campervan... Been falling all over the place for the last few days, keep missing keys trying to type this, twitchy fingers and very unsteady. I wonder if you can remember what it was like before you became medicate?. What were your the ups and downs were like? I've rang my neurologist secretary to request a visit and start some treatment, I have been falling more often and finding it harder to catch myself so it probably time for some help. Thanks for the insight, John

[@thesecretlifeofparkinsons]

I remember 2 years ago when I had to go off my medication (Ropinirole which is a dopamine agonist) to switch over to carbadopa-levedopa. I'm not a doctor and I don't know what it's like to add cancer treatment on top of PD, but I would have to guess that the PD meds would truly help. Once I went on C/L, it took about 4-6 weeks to feel the full effects of the medication, but it was amazing (for me). Good luck