Hey Jeremy! I just found your channel. And man, am I glad I did! I am 62 about to turn 63 in July and was diagnosed in April 2023. Just wanted to say thank you for your perspective. I'm still so new to all of this that it gets overwhelming and then I find someone with a fresh take on this weird, random confusing illness. I look forward to your future vlogs

I would consider the pump if i wouldn't go the dbs way, no easy choices for us bud, I'm living with it for 7 yrs and 15 lev/carb a day (2.5 × 6) every 3 hours, 1 cr lev for night and 2 amantadine is my regiment and doing good. May be getting close to my max so I'm mentally preparing my options, dbs, pump or ?. Thanks for your videos J.mac.

As my wife reminded me this evening, we know our own bodies better than the docs. Hang in there, dude!

I've had no issues with my DBS surgery over two years ago, but that's one man's story. But I agree that your doctor needs to be upfront with all the information.

Hi Jeremy! I just discovered and subscribed to your ‘cast. My Primary Care has diagnosed me with 3 separate elements of Parkinson’s but not PD itself and I’ve not yet seen a neurologist. Last year I barely made it through an acute kidney failure that put me into dialysis for 3 months. That was an experience I never want to repeat, but my kidney function is at 3b and will never be better than that. I’m not sure how soon I’ll be ready for another possible life altering diagnosis. But I totally understand your decision about the surgery. If you are able to function and be happy with what you can do yourself considering everything plus what you can do with your family, sounds like you’re comfortable with your decision. Sometimes our drs. can only offer us possibilities of how to live with our diseases, but they are not living them for us and each of us has to make our own life decisions as confounding as it may be to others. It all depends on that road that we each travel and no one else actually places their footsteps within ours to follow the way we do or do not walk. Best of luck to you!

Jeremy, my husband has had PD for 19 years. Six years ago he had DBS…. It was life changing! My silly, sly humor guy was back, it’s not perfect. He has 4 settings programmed so far, we get new configurations when different symptoms come up. I accidentally turned the DBS off while trying to turn off the hand held programer. He was off for 2 weeks before his doctor found my mistake. My husband said during the off time he felt so bad he just wanted to die. In the long run the DBS was the best thing he’s done for PD. He does have voice and confusion issues, but that’s the PD progression. That’s going to happen DBS or not. It’s a big decision, I get that, we researched and talked to people who’d had the surgery. Maybe it’s not right for you now, but down the road it might be. I wish you and your loved ones the best. ❤❤❤

Hi again JMac from Australia 🇦🇺 I completely respect your choices and decisions regarding your body and your brain but I just wanted to mention that my uncle had DBS many years ago......probably 15-17 years ago I think now, maybe longer and he had it very early on when it was quite new here. I just wanted to say it made the biggest difference in his life.....they travelled all over the world and he was so happy he had it done. He has had his batteries cha get twice now and just started using a wheelchair about 1 month ago. He just turned 73 this week. Everything affects everyone differently I know but for him it was game changing. ❤

Love the shirt and the one you're wearing! I'm glad you are doing what you think is best for you. Gotta look out for numero uno.

My strangest doctor visit was about a year after my diagnosis. Hayley and I had gone to see a specialist who told me that I did not look like I had PD. Obviously, we never saw that doctor again.

Your So-Cal music friend had to drop a comment. This message from you was so very inspiring. My Jazzercize instructor always says “you do you” and that’s what we all need to do. Information is key.

it's your decision to make, i think it's better be true and in peace with yourself rather than chasing all potential remedies and regret later. you did a research and concluded one way,it doesn't mean that you can't change your opinion later based on new information. one thing to consider is that you can always go to DBS route later but you can't undo DBS or focus ultra sound and reverse a surgery

I just did a dbs surgery failure search and one of the first things that came was effecting speech. I'm with you on this. Things would have to be awfully bad before I'd go this route.

Just ‘cause you just had a birthday doesn’t make you old! 😂 Hang in there you are still young. Like I have told you before a better future is ahead.

Sleep when you’re tired. Go out when you can. Watch supplements they can escalate our issues. Yes I’m fed up. Fell three times. Fractured both shoulders. U

There's so much contradictory and wrong information even on respected legitimate websites it's really no surprise doctors are often wrong, or not up to date on the latest research. Everyone has to be a good self-advocate and hopefully be able to do their own research, and on top of that convince the doctor to listen which can be really difficult. And due to long waits it's not easy to just keep switching doctors until you find a really good one. I guess we need recommendations. But your doctor doesn't sound too bad because she's just repeating what she read on some respected website or learned in medical school.

No she’s not, I had DBS 13 years ago and have not had any vocal issues, it was the greatest blessing in the world, my tremors are minimal, my gate is ok. It will not improve balance issues, I ride a stationary bike 3 - 5 miles a day, work with resistance bands, and chair yoga. In April I celebrated 15 years since my diagnosis and my neurologist says I’m the healthiest sickest man he’s ever seen. He has been my Dr. for 13 years , he has specialized in PD for almost 30 years. I will say DBS was a must decision because I have a low tolerance to the drugs, no matter what I take they nauseate me. BTW my dr. Says weight is good, I’m 6’5 and 250 lbs😂 so plenty to lose because later on weight loss is inevitable. I’m 72, both my grandfathers lived to 96 and 98 respectively, my dad until 87 but he smoked and died of throat cancer. Enjoy your videos because where I live the closest support group is 70 miles.😊

Have you heard of Ambroxol, originally purposed as a cough medication but now in phase 3 Clinical trial for Parkinson’s

J you go with your heart my friend. I totally hear you and understand. I am afraid as well. But the positive outcome of dbs is what we want.

Do what you think is right for yourself you have to live with your decisions. God Bless 🙏

Duodopa pump might be an option? I am going for DBS, my doc stated their can be vocal issues. Something to note.