Thank you for talking about the day to day. Diagnosed in the last 2 years, still seems unreal. I really try to be positive but when new symptoms arise it’s scary and maddening. Symptoms since 2019 🧐
I'm getting used to various pains appearing and disappearing over time. One thing is for sure... PD is something that is constantly changing the way it affects your body and as soon as you work out how to manage one set of symptoms, another set appears. The only constant is change 😛
I am in tears that I found you both. I was diagnosed 5 years ago and this is the first time I've heard someone speak my language who completely understands what I'm experiencing, You are both gifts and I'm so grateful to have found you. Thank you!
Oh my goodness, thank you for the kind words. I'm so glad you found a resource you can relate too! Check out our non-profit website (www.5kforjk.org) and order yourself a FREE "First Step kit". It's filled with things we (patients) wish we knew when we were diagnosed. Here's the form: 5kforjk.app.neoncrm.com/forms/createaccount
Stay strong and Thank you for this show. I watched a PD show yesterday that recommends edible medical marijuana only at bed time. During the day THC and CBD mixed creams and salves for the aches and pains. The creams apparently don't break the brain blood barrier according to my neurologist. They have been trying to get me to use this for 3 years. I've been diagnosed for 6 years but am sure now that I've had PD for 30 years it was just masked by my deep heart issues for the first 23 years. I go to PT every week for over 2 years now. My tech is certified in Big and Loud, Dry needling has helped but soft massages help the most. I understand the pain and how it is 95% in flux on a daily basis. I have a pain in my right side and right hip that I can count on every morning. Thank you again and never give up.
Well say. PD is the lucky bunch compared to many scarier ones. Enjoy life all. Love ur videos Jessica and Brian. Let's feel the pain, feel the love ....
Non stop pain for sure. Thank God for Aleve & sleep. 😊 I have Inbrija too. It's levodopa in an inhaler. It's a 'rescue' medication that acts faster than a pill. Its a pain to use . I do like how quick it works 🙂
Hey folks: I actually have a pump right now, coincidentally, although it's apomorphine in my case. They kept me in hospital for a couple of weeks, adjusting my medication in various ways, before sending me home. I should add that I haven't been "officially" diagnosed with Parkinson's yet, although I've been promised that I'll get answers in January. To start: the pump hasn't been a magic solution, but the effect is considerable. Instead of flicking between ON/OFF states as the medication wears off, I'm now usually ON between times when I take medication. This isn't 100% effective, but certainly 90%+, at least in my case. Anyway, specifics: yes, you have to change the infusion site once a day. That means removing the port (sticker and needle). It's painless and easy. However there is inflammation, so anti-inflammatory cream will help considerably. I tend to rotate around four zones: both sides of the stomach and thighs. Applying the infusion port (sticker and needle) is done with an injector...er...thingy. It's easy enough. Just put the injector on the skin, push the button firmly, then lie back and think of England. There is a momentary prick, but that's all. I will add that the sticker is not waterproof, so you really can't shower with that thing. It falls off in moments. I strongly recommended securing it with tape too. I managed to tear the thing off as I pulled my pants up, for instance. The pump itself isn't complicated. It's smaller than a TV remote, and fits in a pouch hung from either a belt or like an over-the-shoulder bag. The pump connects to the port via a tube (be sure to clear out any air, of course). The tube is actually a bigger pain in the backside than the pump, since the accursed thing keeps getting caught on something. It can be a tad irritating or even worrying, but combined, th.e port and tape make it extremely difficult to pull out unintentionally. Our circumstances are obviously different (32, flirst symptoms at 30), but the pump has been amazing for me. It has effectively restored full mobility, at the cost of a nurse coming by every day to do all the things.
This disease is like a game of wack-a-mole. Different pains showing up in different places at different times. I've only been dealing with the motor symptoms for about a year. And at my age (79) I'm wondering is this from normal old age? Is it PD? Is it the progression of issues I've dealt with in the past that's are showing up again? Such as the back pain you talk about. I've had lumbar issues for years. But now it is more consistent. Normal or PD? I've had a flare up of Trochanteric bursitis. Normal or PD related? Is this a way PD folks experience pain? Is PD pain the same as other orthopedic pain?
Do either one of you get severe headaches? My face neck and back hurt so bad. I am still trying to get a definitive diagnosis as my datscan was normal and I have no tremor, but an internal tremor
Brian Baker you're the glue that keeps everything real. Hopefully it moves on to no pain... I go through the same pattern. Stiffness because we don't toss and turn at night like normal ppl
This is a bit off subject. My husband had DBS surgery 18 months ago with no improvement. DBS on one side, his right. His right limbs are practically useless. His left arm and leg work better and there's no DBS on that side!
If DBS was done on the right side of the brain, that means it will only affect his left limbs, right? So that makes sense. Why did they decide not to do both sides at the same time? Maybe he needs the left side done (to help the right limbs)
Oh yes Parkinson’s pain…I’m 15 years since diagnosis and thankfully can still play competitive tennis. I play 3 times a week all year and yup I get new pain that pops up for no real reason. I fix one thing up and another pain seems to pop up! Frustrating but I keep going…never give up! 🤷🏼♀️ I’ve had back spasms about 4 times over the last 10 years that have brought me down on the ground and literally can’t move. I find if I have a massage a couple times a month and go to a deep fascia physio it has helped. 🥰
Thank you for talking about the day to day. Diagnosed in the last 2 years, still seems unreal. I really try to be positive but when new symptoms arise it’s scary and maddening. Symptoms since 2019 🧐
I'm getting used to various pains appearing and disappearing over time. One thing is for sure... PD is something that is constantly changing the way it affects your body and as soon as you work out how to manage one set of symptoms, another set appears. The only constant is change 😛
I am in tears that I found you both. I was diagnosed 5 years ago and this is the first time I've heard someone speak my language who completely understands what I'm experiencing, You are both gifts and I'm so grateful to have found you. Thank you!
Oh my goodness, thank you for the kind words. I'm so glad you found a resource you can relate too! Check out our non-profit website (www.5kforjk.org) and order yourself a FREE "First Step kit". It's filled with things we (patients) wish we knew when we were diagnosed. Here's the form: 5kforjk.app.neoncrm.com/forms/createaccount
You guys are doing great work. Keep on keeping on. Remember that you are born for a purpose that the world cannot do without.
Stay strong and Thank you for this show. I watched a PD show yesterday that recommends edible medical marijuana only at bed time. During the day THC and CBD mixed creams and salves for the aches and pains. The creams apparently don't break the brain blood barrier according to my neurologist. They have been trying to get me to use this for 3 years. I've been diagnosed for 6 years but am sure now that I've had PD for 30 years it was just masked by my deep heart issues for the first 23 years. I go to PT every week for over 2 years now. My tech is certified in Big and Loud, Dry needling has helped but soft massages help the most. I understand the pain and how it is 95% in flux on a daily basis. I have a pain in my right side and right hip that I can count on every morning. Thank you again and never give up.
Love yall. 12 yrs with PD...WE AREN'T ALONE.
You two are bringing hope to people around the world. Hope you get some respite from the pain soon.
That's so nice! Thank you! And I hope so...everyone needs a little hope ;)
Agree, Love you guys, you rock ❤! Thank you😊
Im suffering from the same pain and side affects from the carbo/levo i work out every day it keeps me going part of the day. im going for dbs surgery
Well say. PD is the lucky bunch compared to many scarier ones. Enjoy life all. Love ur videos Jessica and Brian. Let's feel the pain, feel the love ....
Non stop pain for sure. Thank God for Aleve & sleep. 😊 I have Inbrija too. It's levodopa in an inhaler. It's a 'rescue' medication that acts faster than a pill. Its a pain to use . I do like how quick it works 🙂
Shout Out From London!! 🙏🙏
Hellow London! :)
I have high hopes for the subcutaneous pump. 😎🌴 Anything that bypasses the G.I. system for levodopa I have hope for. 👍
The pump has been terrific for me so far. It's not the most stylish accessory, but if it means I can go all day without symptoms, I'm happy.
Hey folks: I actually have a pump right now, coincidentally, although it's apomorphine in my case. They kept me in hospital for a couple of weeks, adjusting my medication in various ways, before sending me home. I should add that I haven't been "officially" diagnosed with Parkinson's yet, although I've been promised that I'll get answers in January.
To start: the pump hasn't been a magic solution, but the effect is considerable. Instead of flicking between ON/OFF states as the medication wears off, I'm now usually ON between times when I take medication. This isn't 100% effective, but certainly 90%+, at least in my case.
Anyway, specifics: yes, you have to change the infusion site once a day. That means removing the port (sticker and needle). It's painless and easy. However there is inflammation, so anti-inflammatory cream will help considerably. I tend to rotate around four zones: both sides of the stomach and thighs.
Applying the infusion port (sticker and needle) is done with an injector...er...thingy. It's easy enough. Just put the injector on the skin, push the button firmly, then lie back and think of England. There is a momentary prick, but that's all. I will add that the sticker is not waterproof, so you really can't shower with that thing. It falls off in moments. I strongly recommended securing it with tape too. I managed to tear the thing off as I pulled my pants up, for instance.
The pump itself isn't complicated. It's smaller than a TV remote, and fits in a pouch hung from either a belt or like an over-the-shoulder bag. The pump connects to the port via a tube (be sure to clear out any air, of course). The tube is actually a bigger pain in the backside than the pump, since the accursed thing keeps getting caught on something. It can be a tad irritating or even worrying, but combined, th.e port and tape make it extremely difficult to pull out unintentionally.
Our circumstances are obviously different (32, flirst symptoms at 30), but the pump has been amazing for me. It has effectively restored full mobility, at the cost of a nurse coming by every day to do all the things.
This disease is like a game of wack-a-mole. Different pains showing up in different places at different times. I've only been dealing with the motor symptoms for about a year. And at my age (79) I'm wondering is this from normal old age? Is it PD? Is it the progression of issues I've dealt with in the past that's are showing up again? Such as the back pain you talk about. I've had lumbar issues for years. But now it is more consistent. Normal or PD? I've had a flare up of Trochanteric bursitis. Normal or PD related? Is this a way PD folks experience pain? Is PD pain the same as other orthopedic pain?
Love you guys keep up the good work
Do either one of you get severe headaches? My face neck and back hurt so bad. I am still trying to get a definitive diagnosis as my datscan was normal and I have no tremor, but an internal tremor
Looking forward for the podcast with Carl from UK 😊🎉
Brian Baker you're the glue that keeps everything real. Hopefully it moves on to no pain... I go through the same pattern. Stiffness because we don't toss and turn at night like normal ppl
anyone need to take levodopa overnight a few times for a right hand tremor so you can sleep .... etc? the tremor keeps me from sleeping etc etc
I've had the opposite effect, with the levodopa causing dyskenesia in my left arm and leg.
What medication is "CL"?
Carbidopa levodopa
Will Medicare pay for the new drugs?? No insurance from the job anymore because I can't work.??
Is it stenosis of the spine?
This is a bit off subject. My husband had DBS surgery 18 months ago with no improvement. DBS on one side, his right. His right limbs are practically useless. His left arm and leg work better and there's no DBS on that side!
So sorry..What does your neurologist think about this sad situation..DBS can be shut off!
If DBS was done on the right side of the brain, that means it will only affect his left limbs, right? So that makes sense. Why did they decide not to do both sides at the same time? Maybe he needs the left side done (to help the right limbs)
I take supplements mucuna 1 or 2 hour before bed, help me sleep through the night
Oh yes Parkinson’s pain…I’m 15 years since diagnosis and thankfully can still play competitive tennis. I play 3 times a week all year and yup I get new pain that pops up for no real reason. I fix one thing up and another pain seems to pop up! Frustrating but I keep going…never give up! 🤷🏼♀️ I’ve had back spasms about 4 times over the last 10 years that have brought me down on the ground and literally can’t move. I find if I have a massage a couple times a month and go to a deep fascia physio it has helped. 🥰
😅o😊😊😊
Jessica,, your dyskinesia is getting very noticeable. Can the writhing contribute to your pain? Have you considered DBS?
Does anyone know about MSA and CL
😊 0:33 0:34 0:34
Parkinson's disease (PD) can cause spinal stenosis,
I'll have to tell Brian to ask his MDS
@ he will need a mri .