I hear you Jeremy. When I was first diagnosed with Parkinson’s last year, I signed up for every newsletter, every website, every research study, my email box was flooded with stuff like this gene mutation was discovered, Australian rats were injected with a chemical that reversed the Parkinson’s, in five years we can experiment on humans…….. I’m keeping Hope alive in the event that something does come across that does cure Parkinson’s. A lot of clinical studies are funded by the MJF charities. I like that someone had asked him what is the end goal of his foundation and he said to go out of business.
Crap I got cut off. But I still keep going to the gym, most days it’s difficult to get out of bed, but I keep going. Somewhere out there some lab is brewing the cure, we just don’t know it yet. That hope keep me going. Then again, my stupid heart disease will probably get to me first 🤷♂️
We are here to listen buddy, it definitely sucks. I don’t know what to say…? I just live day by day…trying to do best I can…yup..that’s about it man. I ask God to give us a cure and to make it easy ❤️ Go Oilers Go!! Stanley Cup Baby!!
Hey Jeremy, right there with you for a cure. Seems not much has changed for PD patients since C/L was introduced except DBS. It's good to vent and get the frustration out before it boils over.
@@JeremyMcdonald I follow you and your 2 other friends . I am newly diagnosed 3/1/22 . The videos atleast help me inderstand things that have been wrong in my health for decades , I am now 51 . Do yall have or have yall talked about forming a support group ? Much love for all that you and others share .
Man, I cannot even imagine the frustration behind this , to be told one thing, yet no progress is being made. I have always appreciated your genuineness and honesty on all subject matter. Venting can be so good for the mind. I remember you at pretty much all of your stages in life for the most part, you will always be the coolest rock star and best skateboarder I know. -Scott
After watching most of your videos I can see my fight is not near as hard as yours. I am 62 was diagnosed 4 years ago, and the doc said I should have about 8 good years before things get bad. I have pretty good shaking on my right side and it hasn't moved to the left that I can see. I don't have leg problems yet but do stumble more often. My cognitive skills are getting worse faster than I like. I am taking Sinemet 25-100 MG ( 9 pills a day) and Propranolol HCl 20 MG just 1 a day.I feel lucky so far .Keep fighting it brother and thanks for sharing your fight!
Let it out man! I feel yah 100% We gotta be real sometimes, right? When the frustration builds up, have to get it out somehow. I know I'll always listen :) There's so much to be frustrated about too when you start thinking about it too much. I'll get a little heated then I'll laugh a little...We do what we gotta do. Thanks for being real and sharing the vid Jerry, appreciate it.
Absolutely well said! I try to be as real as possible. So days I can laugh it off. Other days, like in this video, it can get the best of me! Thx for listening!
I'm at the beginning of this....so I haven't gone though the gamut of meds yet. All I can do is pray at this point. The meds have made such a huge improvement in minimizing my symptoms; however, the other day I noticed the bradykinesia and instantly felt depressed. I have gone almost two months not noticing the bradykinesia. I guess that was a gentle reminder that it's still there and working it's way to the surface. Glad you vented...sometimes it's just good to let it out.
Hey Jeremy, I like your style. I was recently diagnosed at the age of 64. Joined some Facebook support groups, but they were very depressing. Even when you vent it is not depressing. I have subscribed to your channel and look forward to watching all your posts.
I worked and saved all my life to get to retirement and now this! I had plans to finally learn guitar now my fingers dont work. I had plans...now I don't...now I just worry. It doesn't help that I just watched MJ Foxes documentary "Still". The future doesn't look bright at all.
I feel your frustration. It's okay to vent. Better to vent then keep lying to ourselves and keep waiting for a cure that isn't coming. Only thing I have experienced that comes close to what your experiencing it is my own frustration. I hate to be pretending to be in a good mood when I'm not. Sometimes I pretend so non PD-others will feel better when they are around me. I know it doesn't do any good to be down but PD doesn't give you anything to look forward to. I have had DBS surgery a year and half ago. It's no cure and like medications-it doesn't slow down the progression of the disease. Nothing stops that. Not even exercise. Stupid F***ing disease!!!!! Sorry to be such a kill joy, but you started it. hahahahahahahaha
I hope it does more than I'm aware of. Let me explain. I was diagnosised 3 years ago with an "aggressive PIGD variant form of Parkinson's" . I went from a stage 1 to a stage 3 in two years time. I had maxed out all medications and still experiencing horrible "on" & "off's" throughout my day and nights. The neurologists didn't know what to do with me - so they offered me DBS. I took them up on it because I had run out of options and meds to take The brain surgery was a piece a cake. The battery surgery - not so good. It has been 1 1/2 years since my DBS was installed. Prior to the surgery I had ALL the symptoms Parkinson's has to offer - except two. I never had a tremor and still don't and I never had erectile dysfunction. The only reason I can think of not having the latter is because I don't have a penis. I still have all my symptoms and on & off's and I still take 9 pills a day. The DBS has just made these symptoms less but not completely gone. DBS works wonders if you have a tremor. It can make a tremor disappear. Unfortunately, I never had a tremor so it has been difficult finding the right setting. They don't have a tremor to guide them. So I would have to say - if you have a tremor and experiencing horrible on & off's - DBS might be a good choice. I am not sure how it works on non motor symptoms because I still have all of those. Just remember it doesn't fix everything. It actually doesn't fix anything. It is just a tool that works like a medicine would. It never stops the progression of the disease. It doesn't buy you any more time. Well, that has been my experience so far.
@@annsheehan1266 I glad to hear that you are getting some relief from you symptoms. I guess all we can really do is cross our fingers and wait. Thx for watching!
Husband has PD but in a positive note all I can say is at least we know we have limited time opposed to others that suddenly die. Make the best of the rest! This life is short compared to eternity! Let's call it Grace. One has time to get things right with God and others. There will always be illness in a broken world but Jesus fixed it on the cross. Know that an amazing life is around the corner if you accept Him! From South Africa
Jeremy you're absolutely right, there just doesn't seem to be enough movements towards actual interventions that will bring this disease to an end. I share your frustration.
Hey Jeremy - thanks for posting. I haven’t read MJF’s book but you know things suck when a great guy like him, positive to beet the band, and you say his book is kind of dark. After all, Dr. Parkinson recognized this condition over 200 years ago, levodopa was found and came out in the 1960’s, and not only do we not have a cure but we don’t even really know the true cause and source of this disease ! I was diagnosed, like you, 8. years ago and since my medication worked but variably, my movement disorder specialist asked if I was interested in DBS, and after saying yes, was referred to the local surgery center for assessment (after all “interested” still didn’t commit me to doing it). After that and reading a lot, asking lots of questions, decided to go for it and it has been a life changer, man. If I had to, I would do it again in a heartbeat. Now don’t get me wrong, it is not a cure, but with the option of adjusting the level and location of stimulation and just taking a relatively small amount of levodopa, most people, even physicians, cannot tell that I even have this. With side effects of not being able to walk (yikes) I would ask for a referral for assessment (not everyone who wants it can get it) and find out if the surgeon even feels you are a candidate. Just my opinion. Keep it up, Jeremy.
Thank you for sharing your story, Arnold! I’m glad that DBS has worked so well for you. One of my biggest concerns with that is vocal problems. I can still sing as I was in a band for years and am an avid podcaster. Have you experienced issues with your voice?
Yeah i feel the same way too just bunch of bandaids alnd false hope but no cure . On monday july 10 2023 i had an appointment with a 2nd neurologist at ohsu portlaand oregon had the worst doctors visit iin my life. The dr started to hammmer me with questions and didnt want understand my answers to ennd it all he wrote down that i deny using drugs .and i exagerated when i fell during a walk test . I was like really this dr thinks im a drug addict and a lier ii felt like crap .
@@JeremyMcdonald yes but we have no choice but be positive and believe their will be a cure and we will able to do all what we want to which we used to, never loose hopes their can be so called miracle someday and all will be fine again 🙏
I recently went through DBS at I didn't want anybody in my head. I Was squeamish at best but when it finally was turned on it was l II like day and night
I am in early stages and have been diagnosed with RBD ( Rapid Eye Behavior Disorder). That means I have a 95% chance of developing a Parkinson's related disease within 5-7 years. The 3 main treatments I have been researching are: 1) Stem Cell replacement, trials start in England this year, (trail was postponed by pandemic) a lot of people don't seem to know that implanted fetal dopamine cells were injected into 7 human subjects back in 1992! The results showed real improvement and enabled some patients to drastically cut back on meds. The issue then was the controversy of using fetal cells and the treatment was extremely expensive. with todays tech they can use your own cells to create stem cells and the price is far less and keeps dropping. 2) Programable vibrating sensory glove for Parkinson's instead of Deep Brain Stimulation. I'll gladly wear a glove for 2 hours a day instead of having someone drill holes into my brain and then probe around in there to try and interfere with bad signals...so far it has had better results in ongoing trails than DBS. 3) Small molecule anti-inflammatories (small molecule means they can cross blood brain barrier) . The one I have my eye on is called neflamapimod. It was originally created to treat rheumatoid arthritis but was then tried on Alzheimer's. They found that it had a much more effective ability to treat Parkinson's related disease. Inflammation is thought to be a significant player in the spread of the disease across the brain. Until then I tell myself..... I could have stage 4 cancer but I don't... I could be paralyzed but I'm not....I can still play a pretty mean metal guitar riff... for now.... mainly though I have an 8 year old son that needs me to be there for him...and so I am.
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You are preaching to the choir, with me. I have Parkinson's Bradykinesia and am asking the same questions.
Can I get an Amen? Thx for watching!
I hear you Jeremy.
When I was first diagnosed with Parkinson’s last year, I signed up for every newsletter, every website, every research study, my email box was flooded with stuff like this gene mutation was discovered, Australian rats were injected with a chemical that reversed the Parkinson’s, in five years we can experiment on humans……..
I’m keeping Hope alive in the event that something does come across that does cure Parkinson’s. A lot of clinical studies are funded by the MJF charities. I like that someone had asked him what is the end goal of his foundation and he said to go out of business.
Crap I got cut off. But I still keep going to the gym, most days it’s difficult to get out of bed, but I keep going. Somewhere out there some lab is brewing the cure, we just don’t know it yet. That hope keep me going.
Then again, my stupid heart disease will probably get to me first 🤷♂️
Yeah, we have to try and stay positive but sometimes it just gets so frustrating! Thx for watching!
- I like that someone had asked him what is the end goal of his foundation and he said to go out of business.
This is so good lol
We are here to listen buddy, it definitely sucks. I don’t know what to say…? I just live day by day…trying to do best I can…yup..that’s about it man. I ask God to give us a cure and to make it easy ❤️ Go Oilers Go!! Stanley Cup Baby!!
Absolutely! I just needed to vent. Thx for listening!
Hey Jeremy, right there with you for a cure. Seems not much has changed for PD patients since C/L was introduced except DBS. It's good to vent and get the frustration out before it boils over.
Thx for listening to me rant. Peace and love!
@@JeremyMcdonald I follow you and your 2 other friends . I am newly diagnosed 3/1/22 . The videos atleast help me inderstand things that have been wrong in my health for decades , I am now 51 . Do yall have or have yall talked about forming a support group ? Much love for all that you and others share .
Man, I cannot even imagine the frustration behind this , to be told one thing, yet no progress is being made. I have always appreciated your genuineness and honesty on all subject matter. Venting can be so good for the mind. I remember you at pretty much all of your stages in life for the most part, you will always be the coolest rock star and best skateboarder I know.
-Scott
That means a lot, cuz! You have definitely seen me at all the strange and hairy(or bald! Stages of my life. Your friendship means so much!
After watching most of your videos I can see my fight is not near as hard as yours. I am 62 was diagnosed 4 years ago, and the doc said I should have about 8 good years before things get bad. I have pretty good shaking on my right side and it hasn't moved to the left that I can see. I don't have leg problems yet but do stumble more often. My cognitive skills are getting worse faster than I like. I am taking Sinemet 25-100 MG ( 9 pills a day) and Propranolol HCl 20 MG just 1 a day.I feel lucky so far .Keep fighting it brother and thanks for sharing your fight!
Thx for watching, Bill! I fight this thing every step of the way. My family needs me too much to quit now!
Let it out man! I feel yah 100% We gotta be real sometimes, right? When the frustration builds up, have to get it out somehow. I know I'll always listen :) There's so much to be frustrated about too when you start thinking about it too much. I'll get a little heated then I'll laugh a little...We do what we gotta do. Thanks for being real and sharing the vid Jerry, appreciate it.
Absolutely well said! I try to be as real as possible. So days I can laugh it off. Other days, like in this video, it can get the best of me! Thx for listening!
I'm at the beginning of this....so I haven't gone though the gamut of meds yet. All I can do is pray at this point. The meds have made such a huge improvement in minimizing my symptoms; however, the other day I noticed the bradykinesia and instantly felt depressed. I have gone almost two months not noticing the bradykinesia. I guess that was a gentle reminder that it's still there and working it's way to the surface. Glad you vented...sometimes it's just good to let it out.
Thanks for listening!
Hey Jeremy, I like your style. I was recently diagnosed at the age of 64. Joined some Facebook support groups, but they were very depressing. Even when you vent it is not depressing. I have subscribed to your channel and look forward to watching all your posts.
Nice! I’m glad that you get my style. I just try to be as real as possible. Thx for watching!
I worked and saved all my life to get to retirement and now this! I had plans to finally learn guitar now my fingers dont work. I had plans...now I don't...now I just worry. It doesn't help that I just watched MJ Foxes documentary "Still". The future doesn't look bright at all.
I know it’s tough to watch MJF at times. Just remember that he has had PD for 30 yrs. And btw, I haven’t watched it yet for the very same reasons.
I feel your frustration. It's okay to vent. Better to vent then keep lying to ourselves and keep waiting for a cure that isn't coming. Only thing I have experienced that comes close to what your experiencing it is my own frustration. I hate to be pretending to be in a good mood when I'm not. Sometimes I pretend so non PD-others will feel better when they are around me. I know it doesn't do any good to be down but PD doesn't give you anything to look forward to. I have had DBS surgery a year and half ago. It's no cure and like medications-it doesn't slow down the progression of the disease. Nothing stops that. Not even exercise. Stupid F***ing disease!!!!! Sorry to be such a kill joy, but you started it. hahahahahahahaha
I'll accept the blame! How much has DBS helped you?
I hope it does more than I'm aware of. Let me explain. I was diagnosised 3 years ago with an "aggressive PIGD variant form of Parkinson's" . I went from a stage 1 to a stage 3 in two years time. I had maxed out all medications and still experiencing horrible "on" & "off's" throughout my day and nights. The neurologists didn't know what to do with me - so they offered me DBS. I took them up on it because I had run out of options and meds to take The brain surgery was a piece a cake. The battery surgery - not so good. It has been 1 1/2 years since my DBS was installed. Prior to the surgery I had ALL the symptoms Parkinson's has to offer - except two. I never had a tremor and still don't and I never had erectile dysfunction. The only reason I can think of not having the latter is because I don't have a penis. I still have all my symptoms and on & off's and I still take 9 pills a day. The DBS has just made these symptoms less but not completely gone. DBS works wonders if you have a tremor. It can make a tremor disappear. Unfortunately, I never had a tremor so it has been difficult finding the right setting. They don't have a tremor to guide them. So I would have to say - if you have a tremor and experiencing horrible on & off's - DBS might be a good choice. I am not sure how it works on non motor symptoms because I still have all of those. Just remember it doesn't fix everything. It actually doesn't fix anything. It is just a tool that works like a medicine would. It never stops the progression of the disease. It doesn't buy you any more time. Well, that has been my experience so far.
@@annsheehan1266 I glad to hear that you are getting some relief from you symptoms. I guess all we can really do is cross our fingers and wait. Thx for watching!
Yeah seriously. Even my mom struggling a lot with PD. Don't know how to save her from the critical decease.
Husband has PD but in a positive note all I can say is at least we know we have limited time opposed to others that suddenly die. Make the best of the rest!
This life is short compared to eternity!
Let's call it Grace. One has time to get things right with God and others. There will always be illness in a broken world but Jesus fixed it on the cross. Know that an amazing life is around the corner if you accept Him! From South Africa
Wow! South Africa! Thank you for watching from half way around the world!
Jeremy you're absolutely right, there just doesn't seem to be enough movements towards actual interventions that will bring this disease to an end. I share your frustration.
It can be incredibly disheartening for sure! Thx, David!
Hey Jeremy - thanks for posting. I haven’t read MJF’s book but you know things suck when a great guy like him, positive to beet the band, and you say his book is kind of dark. After all, Dr. Parkinson recognized this condition over 200 years ago, levodopa was found and came out in the 1960’s, and not only do we not have a cure but we don’t even really know the true cause and source of this disease ! I was diagnosed, like you, 8. years ago and since my medication worked but variably, my movement disorder specialist asked if I was interested in DBS, and after saying yes, was referred to the local surgery center for assessment (after all “interested” still didn’t commit me to doing it). After that and reading a lot, asking lots of questions, decided to go for it and it has been a life changer, man. If I had to, I would do it again in a heartbeat. Now don’t get me wrong, it is not a cure, but with the option of adjusting the level and location of stimulation and just taking a relatively small amount of levodopa, most people, even physicians, cannot tell that I even have this. With side effects of not being able to walk (yikes) I would ask for a referral for assessment (not everyone who wants it can get it) and find out if the surgeon even feels you are a candidate. Just my opinion. Keep it up, Jeremy.
Thank you for sharing your story, Arnold! I’m glad that DBS has worked so well for you. One of my biggest concerns with that is vocal problems. I can still sing as I was in a band for years and am an avid podcaster. Have you experienced issues with your voice?
Slight effect on voice in that my internal volume is a bit reduced, but your sound tech can easily compensate for that.
@@eyeguy777 Thank you!
Diagnosed 2 months ago, pretty sure i ll be able to take vacation on mars before that fxxking cure 😔.
Unfortunately, I feel the same way most of the time.
Yeah i feel the same way too just bunch of bandaids alnd false hope but no cure . On monday july 10 2023 i had an appointment with a 2nd neurologist at ohsu portlaand oregon had the worst doctors visit iin my life. The dr started to hammmer me with questions and didnt want understand my answers to ennd it all he wrote down that i deny using drugs .and i exagerated when i fell during a walk test . I was like really this dr thinks im a drug addict and a lier ii felt like crap .
That sounds terrible, June! I had similar experiences when searching for answers. I didn’t need “pain management”. I needed dopamine!
It's really frustrating 😣
I couldn't agree more!
@@JeremyMcdonald yes but we have no choice but be positive and believe their will be a cure and we will able to do all what we want to which we used to, never loose hopes their can be so called miracle someday and all will be fine again 🙏
I recently went through DBS at I didn't want anybody in my head. I Was squeamish at best but when it finally was turned on it was l II like day and night
Nice! I’m glad it worked for you!
I am in early stages and have been diagnosed with RBD ( Rapid Eye Behavior Disorder). That means I have a 95% chance of developing a Parkinson's related disease within 5-7 years.
The 3 main treatments I have been researching are:
1) Stem Cell replacement, trials start in England this year, (trail was postponed by pandemic) a lot of people don't seem to know that implanted fetal dopamine cells were injected into 7 human subjects back in 1992! The results showed real improvement and enabled some patients to drastically cut back on meds. The issue then was the controversy of using fetal cells and the treatment was extremely expensive. with todays tech they can use your own cells to create stem cells and the price is far less and keeps dropping.
2) Programable vibrating sensory glove for Parkinson's instead of Deep Brain Stimulation. I'll gladly wear a glove for 2 hours a day instead of having someone drill holes into my brain and then probe around in there to try and interfere with bad signals...so far it has had better results in ongoing trails than DBS.
3) Small molecule anti-inflammatories (small molecule means they can cross blood brain barrier) . The one I have my eye on is called neflamapimod. It was originally created to treat rheumatoid arthritis but was then tried on Alzheimer's. They found that it had a much more effective ability to treat Parkinson's related disease. Inflammation is thought to be a significant player in the spread of the disease across the brain.
Until then I tell myself..... I could have stage 4 cancer but I don't... I could be paralyzed but I'm not....I can still play a pretty mean metal guitar riff... for now.... mainly though I have an 8 year old son that needs me to be there for him...and so I am.
We gotta keep thinking positive and not get too down. Thx for sharing!
@@JeremyMcdonald No way to avoid getting down we're only human.