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. ❤❤❤
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. This is your African broda Tibo.
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
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!
In the end, this is a progressive disease. We all will get worse the longer live. The best we can hope for is to have a good attitude and outlook on life. I think you got this in the bag, bud. 👍😉
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.😊
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.
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
U have to control it and not let it control you. Find your happy place for the day. Day by day. No long term worries. Just deal with the day at hand. Make it a good day by knowing what you need to control and limit the effects you feel for today. Tomorrow will bring new surprises for the day. Deal with it and win over it. If this includes sleeping most of the day, then listen to your body and do so. The next day you will benefit . So bottom line my brother. Day by day. No long term drama. Live today !! One last note i been finding listening to music with headphones at night 2 am results with a better day the next day. Only works at night time. Give it a try .
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.
I personally have refused to try some meds because of side effects. I think we should be able to make some choices and not just willy nilly agree to whatever the doctor suggests
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.
I’m not in your shoes yet, Jeremy. An opinion would be just that, an uneducated opinion. Do you know what percentage of people end up with speech issues? Anyway, a thought provoking video as usual. Thanks for your openness. Jack Mack
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. ❤
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.
My last visit, I told my Neuro, how frustrated I am getting and he said well you’re about four years out of diagnosis, so would you think about DBS? Right now I am getting scheduled for a neuropsychology test to rule out other issues. If I pass that, then sign up for surgery.. Up to eight plus pills a day and two Selegiline. They say you don’t use 80% of your brain anyway, so while you’re in there throw in an iPod or something.
@JeremyMcDonald Wow. Sounds like my doctor when I go every 3 months. 7 or 8 Sinemets a day plus other meds does help. Balance is a big issue for me. It’s a good day for me when I can stay out of my wheelchair ♿️. Just happy to wake up with coffee each morning. No surgery for me. Heck Noooo. Great video brother. Love the channel. Keep Rockin. 🎺🎸🎷🥁🥁
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.
Sorry about your results my friend! We have cicadas pretty bad as well….i went out to get the mail this afternoon and it is crazy how loud these are…they almost hurt your ears!
They are working on stuff all the time my friend! Remember, I had great results from PoNS Therapy (gait and balance training) and got most of my yoga poses back. That will be available in the states soon hopefully. I have friends who have had the FUS with good results. And I would say about the new prescription your dr suggested… you never know until you try! You’re doing great fighting this disease off. You may have to work even harder i. The future it’s true but always keep that mind open! They are working hard on finding fixes for us! Keep hope alive! ❤
Thx for your input! That’s awesome about your yoga, too! The big problem that I am running into is the price if these medications. I just can’t afford $600 a month.😟
@@JeremyMcdonald oh that’s a problem I’m familiar with. Canada has ‘free’ healthcare but that doesn’t mean prescriptions or Physical Therapy, etc. 💸 💸💸
@@Here---Now Yes, even with the Good rself discount it was too expensive. I am kind of done pumping my body full of strange new chemicals. Sinemet has been one of the only noticeably effective drugs.
Mein Gott ihm himmel, du bist ja ganz toll Jeremy!!!😅 ♥️ i am happy to meet up w other Parkies!! U know i had hard time believing my Neurologist my dx w PD. K i believe now n i m not taking meds dont think i need m yet Dr didnt prescribed yet. Little shakey but painful legs really irritates me. If i wasnt able to walk or talk yes i would get serious about tx= treatment. Im lazy kinda quit gym n need to work it n my sched i know. I did pick 🎨 a duck on golden pond, i so appreciated the movie this time around, named thebpainting Norman 😅
@JeremyMcdonald Thankyou for being interested n my paintings. The only one available is red sparrow! The other 2 are wedding gifts to my son Harlan. All 3 are originals I can make another if interested. Let me know which u like best
We don't seem to talk about DBS over here in the U.K. I started on Rasagiline and then took Sinemet too.I recently was forced tp switch to Selegiline as there are problems getting Rasagiline at the moment over here in the U.K. But i am not sure any meds' make a difference to me so i am going to stop taking any of them and see what happens.
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. ❤❤❤
That’s fantastic about your husband! And I’m certain that my story has been completely written yet. Here’s hoping for a brighter tomorrow!😊
💚
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.
This is your African broda Tibo.
Wow! Africa! Welcome, Tibo!
Do what you think is right for yourself you have to live with your decisions. God Bless 🙏
Will do. Thx Aaron!
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.
Amen! Good luck to your Oilers!
I'm still doing without medicine
That’s fantastic!
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
Thx, Bobbi! I’m always happy to hear from my viewers and respond to all my messages ASAP!
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!
Thank you so much for reaching out! You’ve a lot to deal with, but I wish you the best. Keep me posted!
In the end, this is a progressive disease. We all will get worse the longer live. The best we can hope for is to have a good attitude and outlook on life. I think you got this in the bag, bud. 👍😉
You are too kind, Kendra!
Duodopa pump might be an option? I am going for DBS, my doc stated their can be vocal issues. Something to note.
I have talked to a guy with Duopa and it sounds really messy and would further limit my mobility. Thx for watching and good luck to you ☘️
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.😊
Thx, Mike! I hope you live to be 100, bro!
💚
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.
That’s awesome, dude!
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
U have to control it and not let it control you. Find your happy place for the day. Day by day. No long term worries. Just deal with the day at hand. Make it a good day by knowing what you need to control and limit the effects you feel for today. Tomorrow will bring new surprises for the day. Deal with it and win over it. If this includes sleeping most of the day, then listen to your body and do so. The next day you will benefit . So bottom line my brother. Day by day. No long term drama. Live today !! One last note i been finding listening to music with headphones at night 2 am results with a better day the next day. Only works at night time. Give it a try .
Sorry to hear that, Joe! Good advice!
@@joec2174 💚
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.
My MDS is a good doctor willing to help me in any way she can. I feel comfortable with her and feel she has my best interest in mind.
Have you heard of Ambroxol, originally purposed as a cough medication but now in phase 3 Clinical trial for Parkinson’s
Thx, Robert! I will look into it!😎
Hey Jeremy, propranolol is a great beta blocker. Lowers blood pressure and helps with anxiety.
Thank you!✌️
I personally have refused to try some meds because of side effects. I think we should be able to make some choices and not just willy nilly agree to whatever the doctor suggests
Amen and amen!
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.
But the real question is, did he ask you to bend over?😂
@@JeremyMcdonald lol thankfully no
I’m not in your shoes yet, Jeremy. An opinion would be just that, an uneducated opinion. Do you know what percentage of people end up with speech issues?
Anyway, a thought provoking video as usual.
Thanks for your openness.
Jack Mack
In my research, it seems to be about 1/3 of people develop speech issues.
@@Here---Now I don’t know that. I am assuming almost everyone. But I’m not taking that chance if I don’t have to.
I have no interest in having anything done to my brain
I agree, Jo Anne!
I don’t see DBS in my future, but things could change. I agree with you, I’d rather be able to talk.
You seem like a talker like me!
You have no clue. 😂 grandma said I could talk the horns off a Billy goat.
@@adawehi55 I love it!
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.
Right on, Tom!
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. ❤
Thx for the positive story, Renee! I will keep that in mind!
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.
I’m happy you understand!
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.
Blockbuster Forever!😂
My last visit, I told my Neuro, how frustrated I am getting and he said well you’re about four years out of diagnosis, so would you think about DBS? Right now I am getting scheduled for a neuropsychology test to rule out other issues. If I pass that, then sign up for surgery.. Up to eight plus pills a day and two Selegiline.
They say you don’t use 80% of your brain anyway, so while you’re in there throw in an iPod or something.
I might consider DBS if they could hardwire in an iPod!😂
@JeremyMcDonald Wow. Sounds like my doctor when I go every 3 months. 7 or 8 Sinemets a day plus other meds does help. Balance is a big issue for me. It’s a good day for me when I can stay out of my wheelchair ♿️. Just happy to wake up with coffee each morning. No surgery for me. Heck Noooo. Great video brother. Love the channel. Keep Rockin. 🎺🎸🎷🥁🥁
I too love my coffee! Thanks so the encouragement!😎
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.
I’m good at doing me!😂 Thx!
If I was a good candidate for DBS I would probably try it if it would help me walk and more "ON time
I know people who have had miraculous results from DBS.
Sorry about your results my friend! We have cicadas pretty bad as well….i went out to get the mail this afternoon and it is crazy how loud these are…they almost hurt your ears!
My son is so freaked out by cicadas that he won’t get the mail!😂
They are working on stuff all the time my friend! Remember, I had great results from PoNS Therapy (gait and balance training) and got most of my yoga poses back. That will be available in the states soon hopefully. I have friends who have had the FUS with good results. And I would say about the new prescription your dr suggested… you never know until you try! You’re doing great fighting this disease off. You may have to work even harder i. The future it’s true but always keep that mind open! They are working hard on finding fixes for us! Keep hope alive! ❤
Thx for your input! That’s awesome about your yoga, too! The big problem that I am running into is the price if these medications. I just can’t afford $600 a month.😟
@@JeremyMcdonald oh that’s a problem I’m familiar with. Canada has ‘free’ healthcare but that doesn’t mean prescriptions or Physical Therapy, etc. 💸 💸💸
@@prismyogahealing Good to know that I am not alone.😎
@@Here---Now Yes, even with the Good rself discount it was too expensive. I am kind of done pumping my body full of strange new chemicals. Sinemet has been one of the only noticeably effective drugs.
Mein Gott ihm himmel, du bist ja ganz toll Jeremy!!!😅 ♥️ i am happy to meet up w other Parkies!! U know i had hard time believing my Neurologist my dx w PD. K i believe now n i m not taking meds dont think i need m yet Dr didnt prescribed yet. Little shakey but painful legs really irritates me. If i wasnt able to walk or talk yes i would get serious about tx= treatment. Im lazy kinda quit gym n need to work it n my sched i know. I did pick 🎨 a duck on golden pond, i so appreciated the movie this time around, named thebpainting Norman 😅
Keep the paintings coming! You are wunderbar!
@JeremyMcdonald sent u 2 more I recently painted acrylics, gotta get used to it cause drys right away. U should try it is relaxing. Hope u got m
@@inezzbeadz I just replied 😊
@JeremyMcdonald Thankyou for being interested n my paintings. The only one available is red sparrow! The other 2 are wedding gifts to my son Harlan. All 3 are originals I can make another if interested. Let me know which u like best
@@inezzbeadz The red sparrow is my favorite! Email me with a price and I’ll see if I can afford it.😊
We don't seem to talk about DBS over here in the U.K.
I started on Rasagiline and then took Sinemet too.I recently was forced tp
switch to Selegiline as there are problems getting Rasagiline at the moment over
here in the U.K.
But i am not sure any meds' make a difference to me so i am going to
stop taking any of them and see what happens.
I totally understand, Dan! I have been taking rasagiline for a while and it seems to become less effective with time.
sympathise with you m’y friendster
Thank you, my brother!
Worst part is not knowing what's next
So true!
Jeremy, your body, your choice.
Thank you, Wanda!