Hey Jeremy, that shoulder sucks. You can just sick an tired of pain. Pain takes away a lot of energy. It's a different kind of pain than a bad cut or getting hit. You're doing people like me some good. Ive heard good things about DBS, of course it varies. Thanks for being here Jeremy, i have watch your old videos and look forward to your new ones. You are helping people with your honesty, I mean a 1000 subscribers whoo hoo!!
Sherry Springfield Missouri not too far from st. Louis. I was diagnosed with fibromyalgia in 2001, just to find out 20 years later it's parkinson's. Wish I would have known 20 years ago
Hey Jeremy. Been watching your videos from just across the mighty Mississippi since my PD diagnosis in 2022. I too was diagnosed fibromyalgia (2007) I also had so many other unexplained non motor symptoms along with the pain. I always knew it was something more, they just couldn't figure it out because my trimmer didn't show up until 15 years later. Thanks for sharing your PD journey with us all. It's been a great help to me!
Dude this happened to me too!!! Blew out my back fixing my wife’s car…..6 weeks of PT, massage, ibuprofen, hot tubs…..back to normal! Two weeks later bent over innocently to pick something up off the floor and BAM!!!! Back seized again!! I did NOTHING!!! Trying a chiropractor this time, wish me luck
I have stupid pains. They make no sense. All of a sudden the spaces between my ribs hurts. I did nothing to injure it. This kind of pain just moves around. I understand the pain from toe cramps.they make sense. I have tremors in my non dominant hand. I'm on pramipexole ER. I've often wondered which was worse the tremors or the possible dyskinesia.Sorry this is a ramble. I've just stumbled on your channel. You're the first person who I've ever seen give straight talk on the subject. Thanks. I've subscribed and I see so much content that I can use and need.
I’m happy that you’re finding my channel helpful, Mary! It can be too to put yourself out there like this, so it’s nice to know that I am making a difference.😎
Mary I too get random pain in my side ribs does yours feel like someone is stabbing you repeatedly? I almost thought I had shingles one time but it wasn't it
Why you beating yourself up 😂! For real though, that sucks. Hope your shoulder feels better by now. Pain is more problematic on my mental health i think than my physical. So far, I have just trucked though it as i need to....and at times it wins the battle. I hear you about the meds....and the rollercoaster ride. I'm not sure about DBS, heard good and bad, I don't really want that option for myself....but definitely don't blame you for seeking out relief! Highly recommend multiple docs opinions? Total support either way! Thanks for all you do, your channel, and your story, take care!
Thx, Billy! DBS is indeed a last resort for me. Unfortunately, I have tried many different medications with very mixed results. And pain does indices affect mental health, which is one of the reasons I have been having a difficult time lately.
Pain Sucks. You are ahead of me on this PD journey, so I am not alone. Your videos give me insight, a look into the near future. As always thank you for sharing!
Pain was my first symptom back in the early 2000s. Diagnosed with fibromyalgia. Diagnosed with PD 2022 when my feet froze to the floor. DATScan. Postural/gait. I’ve had back spasms for the past three weeks. Sometimes, I get so rigid, I look like a dead spider. Inbrija inhaler helps. Hope you feel better.
I was diagnosed in 2016 I’m 66 years old. Like you I’m tired of the pills and symptoms. I’m scheduled for DBS surgery in September. The process so far is on and off medication testing, neuro psych evaluation and a brain MRI. There will be 2 surgeries a week apart. The first under anesthesia to place the transmitter and wires, the second under semi anesthesia to install the brain leads and connections. Programming comes later. From what I’m told there’s an optimal window to do the surgery if you wait too long it might not be beneficial. Most people feel the surgery reverts some of their symptoms back to like they were 5 years ago. I am tired of PD and medications so I figured I would give it a shot and am hoping for the best
Currently n PT due to same left shoulder pain cant lift arm passed shoulder. 1 mo n PT n got worse using cold packs n excersises. Had left tremors pain n legs walk w cain. Brain scan supposedly negative for PD, have PCP appt next week hoping he will send me to orthopedic Dr. I feel a little lost. Life changing no energy due to pain. Thankyou for sharing. Stay strong
Hey Jeremy. So sorry you are still struggling and not having any fun. That was a well balanced and interesting video. Sucks it has to hurt so much. Glad you're getting a chance for DBS🎉 thanks
I just walked my dog on the Mkt trail . Nothing else ,got in my truck and couldn’t move my head to the left without intense pain a 9 out of 10 . Fortunately I could take right turns and didn’t live that far away. MDS seemed to blow me off when I asked about it.
@@JeremyMcdonald I’m not sure and it hasn’t happened again. Thank God. But started keeping a journal for example my right foot started to drag very intermittently from the big toe (like once every other week)
Hey....my mom was diagnosed with this in 2020 back on May 3 of 2023 we almost lost her she aspirated during a procedure this is a very serious disease she falls alot and here recently her left shoulder has been hurting...it's in her right arm, right leg...and slowly moving to her left arm all she does is sit she only gets up when she needs to go to the restroom or doc appointments....she can't sit in the bathtub anymore....she was also diagnosed with Deminta in 2021....so anyone who is suffering with this horrible disease I will definitely pray for you all....😢
Sorry you messed up your arm. I hope it heals quickly. I’m hoping something better comes out before I consider DBS. I definitely don’t want it, but who knows how I’ll feel later.
Western Canada here just found you after 13 hrs in emerg to see a dr to put stitches in hubbies hand. Tore open while falling does anyone have severe abdominal pain It is like pain have in labour. You can see his stomach move like there is a fish in there. My husband screams And he grew up hard and tough I insisted he have muscle relaxant and Ativan before left emerg. Not going home with Tylenol. I also l learned from another channel and tried vit E 1 capsule and magnesium. I ll see what happens. He is so rigid that he is like the stone men from HBO. Anyone try Botox for Rigid shoulders I don’t think massage on back neck will work as he is so rigid That’s it anyone having eye problems also constipation a big problem. 10:25 that is it 330am wed July 10 Canada 🍁
Ugh! Don't want you having or anyone else in pain :( But Arnica gel is great and it's plant based and not a pill. You might give that a try and see if helps even a little bit. I love the stuff!! Hope you feel better soon!!
Sorry about your pain buddy..hopefully you can feel better.. days are going by fast. My dbs is Dec 6th. I cant keep going the way I am now. Off times are bad, dyskinesia bad. No more vacations, it's dbs time baby, no other choice. I've seen the brain thing which is less intrusive, but the results were poor in my opinion. So .. here we go
Neuropathic pain is real but in my case, seems to be managed by avoiding foods containing gluten, lectin, oxalate, phylate etc ie plant poisons. Try a diet devoid of these and see what happens. You might also try a brain calming supplement like GABA, red light therapy and PEMF.
Pain and DBS….two biggies for us, hey? That shoulder looks annoying. Pain for me is in my back and hips…..I have been able to steer clear of pain killers so far and I rely on regular massage, acupuncture and chiropractic adjustments ….. and even though the effects don’t last forever, the initial relief I get is just divine! DBS has been on the table for me over the last 12 months…. My MDS is very keen on it and with my Off times becoming more unpredictable I know it’s the obvious next step but….. I can’t quite commit to it just yet😬
Jeremy please make a video of you getting out of bed in the morning. I heard on another video it can be a problem. I’m wondering if it is the same way I have to struggle to get out of bed like a turtle flipped over on its back and trying to turn over and right itself. It is difficult which is so crazy to me and the pain and stiffness in my whole body, especially in the morning, is extremely painful. I hate my life, but love your realistic videos. Looking forward to you reaching 1,000 this winter.😊
Hey Jeremy, that shoulder sucks. You can just sick an tired of pain. Pain takes away a lot of energy. It's a different kind of pain than a bad cut or getting hit. You're doing people like me some good. Ive heard good things about DBS, of course it varies. Thanks for being here Jeremy, i have watch your old videos and look forward to your new ones. You are helping people with your honesty, I mean a 1000 subscribers whoo hoo!!
That’s awesome! What is your name?
Sherry Springfield Missouri not too far from st. Louis. I was diagnosed with fibromyalgia in 2001, just to find out 20 years later it's parkinson's. Wish I would have known 20 years ago
@@shsharrell9267 Wow! And I thought my road to diagnosis was long. Nice to meet you, Sherry!🙂
Hey Jeremy. Been watching your videos from just across the mighty Mississippi since my PD diagnosis in 2022.
I too was diagnosed fibromyalgia (2007)
I also had so many other unexplained non motor symptoms along with the pain. I always knew it was something more, they just couldn't figure it out because my trimmer didn't show up until 15 years later.
Thanks for sharing your PD journey with us all. It's been a great help to me!
Dude this happened to me too!!! Blew out my back fixing my wife’s car…..6 weeks of PT, massage, ibuprofen, hot tubs…..back to normal! Two weeks later bent over innocently to pick something up off the floor and BAM!!!! Back seized again!! I did NOTHING!!! Trying a chiropractor this time, wish me luck
Bummer, bro! This crap is getting old. Wishing you a speedy recovery!
I have stupid pains. They make no sense. All of a sudden the spaces between my ribs hurts. I did nothing to injure it. This kind of pain just moves around. I understand the pain from toe cramps.they make sense. I have tremors in my non dominant hand. I'm on pramipexole ER. I've often wondered which was worse the tremors or the possible dyskinesia.Sorry this is a ramble. I've just stumbled on your channel. You're the first person who I've ever seen give straight talk on the subject. Thanks. I've subscribed and I see so much content that I can use and need.
I’m happy that you’re finding my channel helpful, Mary! It can be too to put yourself out there like this, so it’s nice to know that I am making a difference.😎
Mary I too get random pain in my side ribs does yours feel like someone is stabbing you repeatedly? I almost thought I had shingles one time but it wasn't it
@@toryberch Yup it did. And then its gone and you never know which random pain will show up next.
@@maryfetch8198 Ugh! These are the worst. Thanks Mary 😊
Why you beating yourself up 😂! For real though, that sucks. Hope your shoulder feels better by now. Pain is more problematic on my mental health i think than my physical. So far, I have just trucked though it as i need to....and at times it wins the battle. I hear you about the meds....and the rollercoaster ride. I'm not sure about DBS, heard good and bad, I don't really want that option for myself....but definitely don't blame you for seeking out relief! Highly recommend multiple docs opinions? Total support either way! Thanks for all you do, your channel, and your story, take care!
Thx, Billy! DBS is indeed a last resort for me. Unfortunately, I have tried many different medications with very mixed results. And pain does indices affect mental health, which is one of the reasons I have been having a difficult time lately.
Pain Sucks.
You are ahead of me on this PD journey, so I am not alone. Your videos give me insight, a look into the near future.
As always thank you for sharing!
I hope I am setting a good example! I’m not perfect and have my daily struggles. However, I would like to think that I win more battles than I lose.
Pain was my first symptom back in the early 2000s. Diagnosed with fibromyalgia. Diagnosed with PD 2022 when my feet froze to the floor. DATScan. Postural/gait. I’ve had back spasms for the past three weeks. Sometimes, I get so rigid, I look like a dead spider. Inbrija inhaler helps. Hope you feel better.
Same here, diagnosed with fibromyalgia 2000. Started noticing tremors 2022. Pain is a big problem for me, starting to have more symptoms now.
Wow! A dead spider? That’s a great comparison! I will have to remember that one. Thx!
I was diagnosed in 2016 I’m 66 years old. Like you I’m tired of the pills and symptoms. I’m scheduled for DBS surgery in September. The process so far is on and off medication testing, neuro psych evaluation and a brain MRI. There will be 2 surgeries a week apart. The first under anesthesia to place the transmitter and wires, the second under semi anesthesia to install the brain leads and connections. Programming comes later. From what I’m told there’s an optimal window to do the surgery if you wait too long it might not be beneficial. Most people feel the surgery reverts some of their symptoms back to like they were 5 years ago. I am tired of PD and medications so I figured I would give it a shot and am hoping for the best
Thx for the info, Stew! Keep me posted.😎
That's great, I'm scheduled for Dec.6th. One surgery 4hrs
Currently n PT due to same left shoulder pain cant lift arm passed shoulder. 1 mo n PT n got worse using cold packs n excersises. Had left tremors pain n legs walk w cain. Brain scan supposedly negative for PD, have PCP appt next week hoping he will send me to orthopedic Dr. I feel a little lost. Life changing no energy due to pain. Thankyou for sharing. Stay strong
That sounds tough! Best wishes!😊
Hey Jeremy. So sorry you are still struggling and not having any fun. That was a well balanced and interesting video. Sucks it has to hurt so much. Glad you're getting a chance for DBS🎉 thanks
Thx, David. Yes, it has indeed been a tough go for me lately. I’m hanging in there, though! Here’s hoping DBS will be an option for me.
I just walked my dog on the Mkt trail . Nothing else ,got in my truck and couldn’t move my head to the left without intense pain a 9 out of 10 . Fortunately I could take right turns and didn’t live that far away. MDS seemed to blow me off when I asked about it.
That is so frustrating when your doctor tells you “Oh, well!”. Was it dystonia?
@@JeremyMcdonald I’m not sure and it hasn’t happened again. Thank God. But started keeping a journal for example my right foot started to drag very intermittently from the big toe (like once every other week)
Hey....my mom was diagnosed with this in 2020 back on May 3 of 2023 we almost lost her she aspirated during a procedure this is a very serious disease she falls alot and here recently her left shoulder has been hurting...it's in her right arm, right leg...and slowly moving to her left arm all she does is sit she only gets up when she needs to go to the restroom or doc appointments....she can't sit in the bathtub anymore....she was also diagnosed with Deminta in 2021....so anyone who is suffering with this horrible disease I will definitely pray for you all....😢
That’s tough! Give her lots of hugs. Best wishes!🙂
Sorry you messed up your arm. I hope it heals quickly. I’m hoping something better comes out before I consider DBS. I definitely don’t want it, but who knows how I’ll feel later.
You will know what to do when the time comes. Thx, Michele!
Western Canada here just found you after 13 hrs in emerg to see a dr to put stitches in hubbies hand. Tore open while falling does anyone have severe abdominal pain It is like pain have in labour. You can see his stomach move like there is a fish in there. My husband screams And he grew up hard and tough I insisted he have muscle relaxant and Ativan before left emerg. Not going home with Tylenol. I also l learned from another channel and tried vit E 1 capsule and magnesium. I ll see what happens. He is so rigid that he is like the stone men from HBO. Anyone try Botox for Rigid shoulders I don’t think massage on back neck will work as he is so rigid That’s it anyone having eye problems also constipation a big problem. 10:25 that is it 330am wed July 10 Canada 🍁
That sounds extremely severe. I can’t imagine how he feels. Wishing you some answers!
sorry 4U
want to let you know I often repeat myself my memory plays tricks on me
having more problems with my balance too
😮
Hang in there, Mike!
pain sucks . dystonia sucks. then on top of PD ha i g a amputation above the knee and the pain that causes and then feel my pd w are worse too.
I can only imagine! I’ve seen your Facebook posts and ouch!
Ugh! Don't want you having or anyone else in pain :( But Arnica gel is great and it's plant based and not a pill. You might give that a try and see if helps even a little bit. I love the stuff!! Hope you feel better soon!!
I will go get some. BTW my shoulder is loosening up.😁
Sorry about your pain buddy..hopefully you can feel better.. days are going by fast. My dbs is Dec 6th. I cant keep going the way I am now. Off times are bad, dyskinesia bad. No more vacations, it's dbs time baby, no other choice. I've seen the brain thing which is less intrusive, but the results were poor in my opinion. So .. here we go
I’m feeling a bit better today, Uzi. Keep in touch about your DBS journey. Whale tail forever!
Neuropathic pain is real but in my case, seems to be managed by avoiding foods containing gluten, lectin, oxalate, phylate etc ie plant poisons. Try a diet devoid of these and see what happens. You might also try a brain calming supplement like GABA, red light therapy and PEMF.
Thx for the info!
Pain and DBS….two biggies for us, hey? That shoulder looks annoying.
Pain for me is in my back and hips…..I have been able to steer clear of pain killers so far and I rely on regular massage, acupuncture and chiropractic adjustments ….. and even though the effects don’t last forever, the initial relief I get is just divine!
DBS has been on the table for me over the last 12 months…. My MDS is very keen on it and with my Off times becoming more unpredictable I know it’s the obvious next step but….. I can’t quite commit to it just yet😬
I can totally relate to being hesitant about DBS. It’s a life changing decision to be sure. Keep me updated!
Hi my friend
Jeremy please make a video of you getting out of bed in the morning. I heard on another video it can be a problem. I’m wondering if it is the same way I have to struggle to get out of bed like a turtle flipped over on its back and trying to turn over and right itself. It is difficult which is so crazy to me and the pain and stiffness in my whole body, especially in the morning, is extremely painful. I hate my life, but love your realistic videos. Looking forward to you reaching 1,000 this winter.😊
The turtle analogy is very accurate. I don’t know if I want the world to see me thrashing around trying to get out of bed, though!😂