Happy New Year, Jen! I experience Freeing Of Gait regularly. I heard that it may be due to taking Carbidopa Levolodpa and have recently begun reducing the amount I take VERY slowly. My FOG also seems to be influenced by where I am. I experience FOG in public places. At home I walk as normally as ever. Here is an experience I had the other day with FOG: I stepped onto the crosswalk on the main road into town. Cars stopped to let me pass. My feet froze in place as they unexpectedly do sometimes because it is one of my symptoms of Parkinson's Disease that I have been living with for 10 years. I focused all my might on striding forward, but only managed shuffling a few inches. Behind the first stopped cars more cars backed up, forming a long line. Suddenly, a woman about my height with white hair and gently wrinkled, tanned cheeks stood beside me. “Do you need help?” She asked in a calm, friendly voice. "If I get a few steps going I will be able to walk normally,” I said. She slipped her forearm under mine and lifted lightly. “Would a song help?” She said. “That works sometimes.” Quietly she intoned, “Row, row, row your boat...” I laughed at the song choice and joined in. Together we sang, “Gently down the stream. Merrily, merrily, merrily…” The rhythm of the words urged my feet to rock from side to side. My right foot swung forward. My left foot followed. A few steps more and we reached the other side of the road, laughing and singing the song to a close, "Life is but a dream." Behind us, the lines of cars rolled townward. Thanks, Jen, for all you do with The Parkinson's Wiggles Project and beyond.
Oh Anthony what a sweet woman and I know how that feels. Granted it has yet to happen to me in the middle of a crosswalk but one time I could leave a neighborhood store because there was a car with its lights on blaring into the doors and five faces staring at me. I had to wait until the car left. I feel fortunate that when I have found myself in a pickle, nice people are always around to help, and I just love this woman who helped you and her song choice 🤗 It made me smile and it sounds like you too. Thank you for sharing this story, and for your kind words!! ❤
@@ParkinsonsWigglesProject One of the benefits of this condition is the kindness of and connections I've with strangers. I've had some amazing conversations with random people. Being human and feeling vulnerable seems so allow people to feel safe and understanding.
Hi Jen, I’ve had my Parkinson’s for over 10 years now. I also have no tremors, but I have very bad freezing of my feet and balance issues. After doing some digging on my own with, I found out there are subcategories of Parkinson’s one of them being the PIGD; otherwise known as Postural Instability and Gait Disorder (PIGD). This is the type that I have, and unfortunately it tends to progress faster than the tremor type. as far as I know, levodopa does not cause the freezing. There are a few videos on TH-cam that explain more about the PIGD version. I like to let off the people on here. Know that I was one of the first people in my area to try this new form of carbidopa levodopa called VYALEV. It was approved by the FDA back in October and I’ve got my system just before Christmas. It’s a small infusion pump type system that you can wear your belt. It puts the levodopa into your body right through the blood system instead of going through your stomach like the oral medication. It helps you find that sweet spot that you need in your dosing and your movement disorder specialist will work that out with you. I can tell you from my experience. It’s work wonders for me. If you take Rytary; in your system a lot faster you don’t have to wait till 30 to 60 minutes to feel effects. I have a lot more on time without the dyskinesia. It’s made by a company called ABVIE; so check it out with your doctor.
I am three years diagnosed with PD and it’s progressing fast (in my opinion). Last fall I started noticing freezing of gait when i would come to stairs. I would just stop at the top or bottom of stairs and it was like my brain was trying to figure out how to navigate the stairs. It scared the heck out of me. My Dr. put me on amantadine and added immediate release Carbidopa-levodopa to add to my regular amount. And as of now 1-1/2 months in, it’s made a world of difference. I think the amantadine is what is really helping. I was also starting to have dyskinesias as well which the amantadine seems to have helped…..for now. Love your channel. Thanks for all you do. Happy new year. John
Are you able to exercise? It's the best thing for our brain, heart, body, and state of mind....and believed to be our best chance at slowing the progression. When I come to a doorway or entry that is a problematic spot for me where I tend to freeze up but don't all of the time. Always super happy to hear that changes made to what's been prescribed makes a difference. Thank you for you comment and watching my videos!!
It is totally a real thing and this woman can smell other illnesses as well! www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di
Hi Jennifer , Happy New Year to you. I missed you videos. I was a bit worried about you. Great to see you back. You look fantastic. Greetings from Ireland this time. I enjoy the Guinness.
The unpredictability of my PD symptoms blows my mind. Like the old poem… There was a little girl Who had a little curl Right in the middle of her forehead When she was good, She was very very good And when she was bad, she was horrid. As you said CLEARLY your body is perfectly capable of being very very good. Of being normal. On those good days I can pretend I don’t have PD and those days I have hope that the next research “eureka” will mean my normal days will be my everyday! Thanks Jen. Love your work and your writing!
My sense of smell is limited, mostly I hope I don't have an odor, because I won't notice it. 🤣😎🌴 Thanks for sharing your journey and your insights, your videos are always helpful. 👍
Thank you and Happy new year to you too!! I have freezing of gait sometimes usually when I’m off, my trouble is dyskinesia that affects the way I walk, I can barely walk when I’m`on sinemet carbidopa levadopa…… ❤😊
Seasons greetings Jennifer from New Zealand Aotearoa. I look out for your videos, they are so informative with contemporary perspectives. Best wishes for your work to get Ending Parkinsons Act implemented. cheers, John
Hi Jennifer I know the smell you are referring to.. Apparently with PD our skin changes and produces excess Sebum which is a natural oily waxy substance. Great video as usual, keep em coming Happy New Year
Hi Clive! In my article I mention the increase in oil production and that I think I can smell PD in my hair ties that I use for my hair, especially when I sweat 🥰
Hello! For me gait and freezing where occurred years into my battle. Freezing occurred in my off time. I couldn’t move, not one step or even turn my body. To make that worse, I was hunched over. When my levadopa kicked in, boom standing straight and moved perfectly. After dbs (September 10th 2024) I don’t freeze anymore. But I don’t think freezing or gait issues is a result of levadopa ..I hope this helped and was in line with your video 🤔❤🇨🇦eh
Hey there! I have the hunch as well....and when I totally freeze up I have some on floor maneuvers to scoot around. It sounds like there are reasons researchers believe C/L impacts FOG but it's also the best medicine available to treat FOG?! I wouldn't be able to walk without C/L and I am so happy to hear your DBS has resolved your freezing issues!!! ❤️
I forgot to talk about the dyskinesia and dystonia (freezing of gate and trimmers)and the commit about you have problems when you play poker can be a trigger for your symptoms. I can really relate. I have also given up on movies and even TV they will set me off. I love watching Football and that can be very difficult trigger as well, mostly watch documentary and historical stuff and TH-cam videos. Anything that is not emotional. I am thinking that I was forced to find out what was wrong with me in 2013 because I could no longer walk very far, I could walk normal at first, then it was like I was exhausted, but I wasn't out of breath but I looked like i had cerebral palsy or late stage MS. It was a relief to be diagnosed with PK the other choices were all much worse. It wasn't like i completely froze, but I just drug the left side of my body around with me. For about 5 years i could just take 4 or 5 carbidopa Levodopa throughout the day and I had no issues except for exhaustion. As you know there are 400+ symptoms we get to choose from and they are changing all alone the way. i wish i had an answer or a secret recipe that made the carbidopa Levodopa work better. My only solution is take more,... but that maybe a very bad idea i am a mess most of the time, its very hard to feel normal when you have this much synthetic carbidopa Levodopa flowing through your veins.
I take 1 C/L every 1.5 to 2 hours. I have been on this schedule for years. Before I was diagnosed I thought I had had a mini-stroke because the left side of my body felt slightly paralyzed and moved slower than the right and was weak. I too also dragged my leg but it was subtle....someone would have to really look to see it. Thank you for sharing your story! ❤️
It’s frustrating. There’s so much we don’t know. Researchers could do better. But it’s also very hard and very individual. I’ve found my time much better spent studying myself and my solution. Our expectations of others are too high and ourselves are too low.
I am so glad i seen your post i have watched many of your post and i find them very helpful I have had early onset Parkinson's for at least since 2009. I am 58 years old. I didn't know it was Parkinson's until 2013 but that is how it goes. I have had DBS and it didn't do much I think. I guess it helps a little but at this point I take about 20 Rytary a day each are 48/195 carbidopa Levodopa. for those that are unfamiliar with Rytary its the time release form of the carbidopa Levodopa and i also take 12 of the regular 25-100 carbidopa Levodopa. i also have some Inbrija if any one wants to talk about that if you know you know!!! Yes there is a smell i have been told it is musky i don't smell it but i trust those that do. i was wondering if any one else have heard of any one taking that much carbidopa Levodopa. I have to take enough to fight the pain that comes with the Parkinson's (if i couldn't keep the pain below 5 i don't think i would last long) and to be able to take care of myself so my wife can work. I just stay at home and try not to get in any trouble mostly. I have some trimers in my right hand but most of the time they stay very controllable.
@@ziontours5893 What a conundrum!! C/L is the best symptomatic treatment of FOG but may also increase it’s occurrence?! Thanks for watching and your comment 🩷
I was prescribed Carbidopa Levodopa over a month ago, but I haven't taken it for fear of the sleep attack side-effect (and I drive A LOT). I've heard that sleep attacks can occur up to a YEAR after getting started on Carbidopa Levodopa, and that something like 12% of the people taking it have had that happen. Jennifer, how did you get started taking the medication? Were you ever afraid of sleep attacks? How should I go about starting the medication without putting other people (and myself) at risk of a potential sleep attack? Sorry if I'm hitting you with too many questions, but I don't have anybody else I can ask about it. The doctor that prescribed it didn't even discuss any of this with me...she seemed more interested in getting me out of there. I only learned of the potential side-effects after getting home and researching it myself.
I first took C/L as a way to help confirm my diagnosis. I drive a lot as well and have never fallen asleep behind the wheel. If I feel tired while driving I listen to music that I love and sing along, so long as I don't have too far to drive. But we are all different. But I can't fall asleep sitting upright anywhere, on a plane, in a chair, on the couch....I need to be flat to fall asleep but I understand anything is possible. Here's a statistic for you. "A recent study revealed that diabetic events were behind 20 percent of crashes precipitated by driver-reported medical emergencies; heart attacks accounted for an additional 11 percent." Driving is a privilege, a risk, and a great responsibility. Do you have a primary doctor you could talk to about your fear? Maybe there is a class of some kind or way to identify signs that you may be at greater risk of falling asleep.
@@ParkinsonsWigglesProject The way I understand sleep attacks, they can hit even if you're not sleepy ahead of time, and unfortunately for me I am VERY prone to falling asleep anyway (I doze at every meeting at work, and I don't mean to...folks have teased me about it since it happens so often). Thanks for the suggestions though. I'm supposed to see that neurologist again in April...I'm going to let her know I haven't been taking the C/L for those reasons. Maybe she'll have some suggestions, that is if she's not in another mad rush to get me out of there. Then again I might need to find another neurologist...she doesn't have the best bedside manner. But on another note I've been taking B2 four times a day for the tremors, and the tremors seem to have been reduced quite a bit since I started taking that. I even got some swing back to my left arm when I walk too. Have you ever heard of taking B2 to reduce the tremors? I hope it's not some placebo effect going on... Thanks for your time, and again, sorry for all the questions. I appreciate you.
Hi Larry, I take 1 25/100 every 1.5 - 2 hours. Amantadine I take at 9 am and 3 pm, not as need. My doctor suggested not to take it too late or after 6 at the latest because it offers a bit of energy, it may prevent you from falling asleep. As always talk with your doctor to see what they believe is best for you.
@@ParkinsonsWigglesProject Hi, Thank you!! It is helpful information. I take 25/100 6 tabs a day, sometimes 7. Been having a lot of FOG this winter. I will consult my Dr..Larry
Omg. Yes, I knew it was a side effect as your speaking of. I thought you knew but then again I didn’t want to over step and talk about your or your listeners medicines. So sorry. My doctor limits my number of pills per day. I hope all is well. Happy New Year 🎉
The reality is I would have still taken it. As the research said, C/L is still the best medicine for FOG....but it would be nice if this potential effect was more widely spoken of 🥰
@@4merLawman There are great links in my article but if you search for the woman who can smell Parkinson’s her name is Joy and the way she describes it is like sour milk.
My hwp to me smells musky, like something left in the wardrobe for a long time. It's hard to describe. Even with a shower every day and clean clothes daily. Some days, it's worse than others. He can't smell it.
I’ve been thinking my smell has changed and I’ve definitely been sweating more. I’m 1 year in with my diagnosis but 3 years of managing noticeable changes. Started to notice a change in my smell over a year ago. Never thought it had anything to do with all the other stuff until I heard about the Scottish woman Joy Milne being able to smell PD. Very interested in learning more able C/L possible having the side effect of FOG. I do not have gait freezing yet but if taking CL might increase my chances of it, I definitely want to know this! I’ll be looking into that, thanks for the heads up. And thank you for sharing and your channel, it has really helped me.
@@ctaylorcaron25 The painful irony is from what I have read, and I'm not a doctor but you can check out the research paper I read from, is that C/L is the most effective treatment of FOG and also may increase it?! Keep in mind this is still being debated but I do think it's important to know ❤
Good morning, have you considered Semaglutide? It’s really helped me the last 6 months. I know there are several trials currently, hopefully some good results coming.
@@jnm.624 I think you should read this 🥰 www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di
I am three years diagnosed with PD and it’s progressing fast (in my opinion). Last fall I started noticing freezing of gait when i would come to stairs. I would just stop at the top or bottom of stairs and it was like my brain was trying to figure out how to navigate the stairs. It scared the heck out of me. My Dr. put me on amantadine and added immediate release Carbidopa-levodopa to add to my regular amount. And as of now 1-1/2 months in, it’s made a world of difference. I think the amantadine is what is really helping. I was also starting to have dyskinesias as well which the amantadine seems to have helped…..for now. Love your channel. Thanks for all you do. Happy new year. John
Hi John! That is great to hear that the adjustments your doctor made has made a big difference. FOG is a strange thing when it strikes, and just like you said, stairs or coming up to something different can bring it on. Thank you for your kind words and for watching ❤️
Happy New Year, Jen! I experience Freeing Of Gait regularly. I heard that it may be due to taking Carbidopa Levolodpa and have recently begun reducing the amount I take VERY slowly. My FOG also seems to be influenced by where I am. I experience FOG in public places. At home I walk as normally as ever. Here is an experience I had the other day with FOG:
I stepped onto the crosswalk on the main road into town. Cars stopped to let me pass. My feet froze in place as they unexpectedly do sometimes because it is one of my symptoms of Parkinson's Disease that I have been living with for 10 years. I focused all my might on striding forward, but only managed shuffling a few inches. Behind the first stopped cars more cars backed up, forming a long line.
Suddenly, a woman about my height with white hair and gently wrinkled, tanned cheeks stood beside me.
“Do you need help?” She asked in a calm, friendly voice.
"If I get a few steps going I will be able to walk normally,” I said.
She slipped her forearm under mine and lifted lightly.
“Would a song help?” She said.
“That works sometimes.”
Quietly she intoned, “Row, row, row your boat...”
I laughed at the song choice and joined in.
Together we sang, “Gently down the stream. Merrily, merrily, merrily…”
The rhythm of the words urged my feet to rock from side to side. My right foot swung forward. My left foot followed. A few steps more and we reached the other side of the road, laughing and singing the song to a close, "Life is but a dream." Behind us, the lines of cars rolled townward.
Thanks, Jen, for all you do with The Parkinson's Wiggles Project and beyond.
Oh Anthony what a sweet woman and I know how that feels. Granted it has yet to happen to me in the middle of a crosswalk but one time I could leave a neighborhood store because there was a car with its lights on blaring into the doors and five faces staring at me. I had to wait until the car left. I feel fortunate that when I have found myself in a pickle, nice people are always around to help, and I just love this woman who helped you and her song choice 🤗 It made me smile and it sounds like you too. Thank you for sharing this story, and for your kind words!! ❤
@@ParkinsonsWigglesProject One of the benefits of this condition is the kindness of and connections I've with strangers. I've had some amazing conversations with random people. Being human and feeling vulnerable seems so allow people to feel safe and understanding.
Hi Jen,
I’ve had my Parkinson’s for over 10 years now. I also have no tremors, but I have very bad freezing of my feet and balance issues. After doing some digging on my own with, I found out there are subcategories of Parkinson’s one of them being the PIGD; otherwise known as Postural Instability and Gait Disorder (PIGD). This is the type that I have, and unfortunately it tends to progress faster than the tremor type. as far as I know, levodopa does not cause the freezing. There are a few videos on TH-cam that explain more about the PIGD version. I like to let off the people on here. Know that I was one of the first people in my area to try this new form of carbidopa levodopa called VYALEV. It was approved by the FDA back in October and I’ve got my system just before Christmas. It’s a small infusion pump type system that you can wear your belt. It puts the levodopa into your body right through the blood system instead of going through your stomach like the oral medication. It helps you find that sweet spot that you need in your dosing and your movement disorder specialist will work that out with you. I can tell you from my experience. It’s work wonders for me. If you take Rytary; in your system a lot faster you don’t have to wait till 30 to 60 minutes to feel effects. I have a lot more on time without the dyskinesia. It’s made by a company called ABVIE; so check it out with your doctor.
I am three years diagnosed with PD and it’s progressing fast (in my opinion). Last fall I started noticing freezing of gait when i would come to stairs. I would just stop at the top or bottom of stairs and it was like my brain was trying to figure out how to navigate the stairs. It scared the heck out of me. My Dr. put me on amantadine and added immediate release Carbidopa-levodopa to add to my regular amount. And as of now 1-1/2 months in, it’s made a world of difference. I think the amantadine is what is really helping. I was also starting to have dyskinesias as well which the amantadine seems to have helped…..for now.
Love your channel. Thanks for all you do. Happy new year.
John
Are you able to exercise? It's the best thing for our brain, heart, body, and state of mind....and believed to be our best chance at slowing the progression. When I come to a doorway or entry that is a problematic spot for me where I tend to freeze up but don't all of the time. Always super happy to hear that changes made to what's been prescribed makes a difference. Thank you for you comment and watching my videos!!
My wife said she noticed a change in my smell before I was diagnosed. I gather this is a real thing.
It is totally a real thing and this woman can smell other illnesses as well! www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di
Hi Jennifer , Happy New Year to you. I missed you videos. I was a bit worried about you. Great to see you back. You look fantastic.
Greetings from Ireland this time.
I enjoy the Guinness.
Hi Doris! Thank you for the kind words and greetings ❤️ Cheers to your Guinness!
The unpredictability of my PD symptoms blows my mind.
Like the old poem…
There was a little girl
Who had a little curl
Right in the middle of her forehead
When she was good,
She was very very good
And when she was bad, she was horrid.
As you said CLEARLY your body is perfectly capable of being very very good. Of being normal.
On those good days I can pretend I don’t have PD and those days I have hope that the next research “eureka” will mean my normal days will be my everyday!
Thanks Jen. Love your work and your writing!
Hi Lou 💕 Thank you for the poem! I am soooo grateful for my on/normal times but what an exhausting and frusrating tease! I love your photography ❤️
This is the best of seen you look with your Parkinson’s since I have started watching, Thx for the great work!
Awe thank you Mike! 🩷 Happy New Year 🥳
My sense of smell is limited, mostly I hope I don't have an odor, because I won't notice it. 🤣😎🌴 Thanks for sharing your journey and your insights, your videos are always helpful. 👍
@@stacey1994 I’m so thankful I still have a pretty good sense of smell 🙌 Thanks for watching and your comment ❤️
Yes, there is a definite difference in the odor. I have not lost my sense of smell
Thank you Tom! ❤️
Yes! I can smell something odd about my scent from time to time! So strange!
So strange indeed! Thank you Jeremy!!
Thank you and Happy new year to you too!! I have freezing of gait sometimes usually when I’m off, my trouble is dyskinesia that affects the way I walk, I can barely walk when I’m`on sinemet carbidopa levadopa…… ❤😊
Seasons greetings Jennifer from New Zealand Aotearoa. I look out for your videos, they are so informative with contemporary perspectives. Best wishes for your work to get Ending Parkinsons Act implemented. cheers, John
Hi John! Thank you for keeping a look out for my videos and the best wishes 🥰
👏Very insightful!
@@magnesnushu Thank you! 🥰
Thank you. I am looking forward to hearing more about the Women's Parkinson's Day!
Yay! ❤️ I am as well. Working on an update to send out in the next week....are you on our email list?
Hi Jennifer I know the smell you are referring to.. Apparently with PD our skin changes and produces excess Sebum which is a natural oily waxy substance. Great video as usual, keep em coming Happy New Year
Hi Clive! In my article I mention the increase in oil production and that I think I can smell PD in my hair ties that I use for my hair, especially when I sweat 🥰
Hello! For me gait and freezing where occurred years into my battle. Freezing occurred in my off time. I couldn’t move, not one step or even turn my body. To make that worse, I was hunched over. When my levadopa kicked in, boom standing straight and moved perfectly. After dbs (September 10th 2024) I don’t freeze anymore. But I don’t think freezing or gait issues is a result of levadopa ..I hope this helped and was in line with your video 🤔❤🇨🇦eh
Hey there! I have the hunch as well....and when I totally freeze up I have some on floor maneuvers to scoot around. It sounds like there are reasons researchers believe C/L impacts FOG but it's also the best medicine available to treat FOG?! I wouldn't be able to walk without C/L and I am so happy to hear your DBS has resolved your freezing issues!!! ❤️
jennifer youre an amazing lady
Awe thank you Mike!!
I forgot to talk about the dyskinesia and dystonia (freezing of gate and trimmers)and the commit about you have problems when you play poker can be a trigger for your symptoms. I can really relate. I have also given up on movies and even TV they will set me off. I love watching Football and that can be very difficult trigger as well, mostly watch documentary and historical stuff and TH-cam videos. Anything that is not emotional.
I am thinking that I was forced to find out what was wrong with me in 2013 because I could no longer walk very far, I could walk normal at first, then it was like I was exhausted, but I wasn't out of breath but I looked like i had cerebral palsy or late stage MS. It was a relief to be diagnosed with PK the other choices were all much worse. It wasn't like i completely froze, but I just drug the left side of my body around with me. For about 5 years i could just take 4 or 5 carbidopa Levodopa throughout the day and I had no issues except for exhaustion. As you know there are 400+ symptoms we get to choose from and they are changing all alone the way. i wish i had an answer or a secret recipe that made the carbidopa Levodopa work better. My only solution is take more,... but that maybe a very bad idea i am a mess most of the time, its very hard to feel normal when you have this much synthetic carbidopa Levodopa flowing through your veins.
I take 1 C/L every 1.5 to 2 hours. I have been on this schedule for years. Before I was diagnosed I thought I had had a mini-stroke because the left side of my body felt slightly paralyzed and moved slower than the right and was weak. I too also dragged my leg but it was subtle....someone would have to really look to see it. Thank you for sharing your story! ❤️
It’s frustrating. There’s so much we don’t know. Researchers could do better. But it’s also very hard and very individual. I’ve found my time much better spent studying myself and my solution. Our expectations of others are too high and ourselves are too low.
I am so glad i seen your post i have watched many of your post and i find them very helpful
I have had early onset Parkinson's for at least since 2009. I am 58 years old. I didn't know it was Parkinson's until 2013 but that is how it goes. I have had DBS and it didn't do much I think. I guess it helps a little but at this point I take about 20 Rytary a day each are 48/195 carbidopa Levodopa. for those that are unfamiliar with Rytary its the time release form of the carbidopa Levodopa and i also take 12 of the regular 25-100 carbidopa Levodopa. i also have some Inbrija if any one wants to talk about that if you know you know!!!
Yes there is a smell i have been told it is musky i don't smell it but i trust those that do. i was wondering if any one else have heard of any one taking that much carbidopa Levodopa. I have to take enough to fight the pain that comes with the Parkinson's (if i couldn't keep the pain below 5 i don't think i would last long) and to be able to take care of myself so my wife can work. I just stay at home and try not to get in any trouble mostly. I have some trimers in my right hand but most of the time they stay very controllable.
My sister says she can smell the PD on me, but I've never smelt it. Scary that C/L may possibly bring on FOG.
@@ziontours5893 What a conundrum!! C/L is the best symptomatic treatment of FOG but may also increase it’s occurrence?! Thanks for watching and your comment 🩷
I was prescribed Carbidopa Levodopa over a month ago, but I haven't taken it for fear of the sleep attack side-effect (and I drive A LOT). I've heard that sleep attacks can occur up to a YEAR after getting started on Carbidopa Levodopa, and that something like 12% of the people taking it have had that happen. Jennifer, how did you get started taking the medication? Were you ever afraid of sleep attacks? How should I go about starting the medication without putting other people (and myself) at risk of a potential sleep attack?
Sorry if I'm hitting you with too many questions, but I don't have anybody else I can ask about it. The doctor that prescribed it didn't even discuss any of this with me...she seemed more interested in getting me out of there. I only learned of the potential side-effects after getting home and researching it myself.
I first took C/L as a way to help confirm my diagnosis. I drive a lot as well and have never fallen asleep behind the wheel. If I feel tired while driving I listen to music that I love and sing along, so long as I don't have too far to drive. But we are all different. But I can't fall asleep sitting upright anywhere, on a plane, in a chair, on the couch....I need to be flat to fall asleep but I understand anything is possible. Here's a statistic for you. "A recent study revealed that diabetic events were behind 20 percent of crashes precipitated by driver-reported medical emergencies; heart attacks accounted for an additional 11 percent." Driving is a privilege, a risk, and a great responsibility. Do you have a primary doctor you could talk to about your fear? Maybe there is a class of some kind or way to identify signs that you may be at greater risk of falling asleep.
@@ParkinsonsWigglesProject The way I understand sleep attacks, they can hit even if you're not sleepy ahead of time, and unfortunately for me I am VERY prone to falling asleep anyway (I doze at every meeting at work, and I don't mean to...folks have teased me about it since it happens so often). Thanks for the suggestions though. I'm supposed to see that neurologist again in April...I'm going to let her know I haven't been taking the C/L for those reasons. Maybe she'll have some suggestions, that is if she's not in another mad rush to get me out of there. Then again I might need to find another neurologist...she doesn't have the best bedside manner.
But on another note I've been taking B2 four times a day for the tremors, and the tremors seem to have been reduced quite a bit since I started taking that. I even got some swing back to my left arm when I walk too. Have you ever heard of taking B2 to reduce the tremors? I hope it's not some placebo effect going on...
Thanks for your time, and again, sorry for all the questions. I appreciate you.
Hi, Do you mind saying what you c/l per day is currently? Is the amantadine as needed? Thank you Larry
Hi Larry, I take 1 25/100 every 1.5 - 2 hours. Amantadine I take at 9 am and 3 pm, not as need. My doctor suggested not to take it too late or after 6 at the latest because it offers a bit of energy, it may prevent you from falling asleep. As always talk with your doctor to see what they believe is best for you.
@@ParkinsonsWigglesProject Hi, Thank you!! It is helpful information. I take 25/100 6 tabs a day, sometimes 7. Been having a lot of FOG this winter. I will consult my Dr..Larry
Omg. Yes,
I knew it was a side effect as your speaking of. I thought you knew but then again I didn’t want to over step and talk about your or your listeners medicines. So sorry. My doctor limits my number of pills per day. I hope all is well. Happy New Year 🎉
The reality is I would have still taken it. As the research said, C/L is still the best medicine for FOG....but it would be nice if this potential effect was more widely spoken of 🥰
@@ParkinsonsWigglesProject
Yes. I agree and a huge supporter of it. 25-100 X 6 per day. 👍
I don't get it. Which Wiggle are you supposed to be? And has Jeff really got narcolepsy?
?
Dr. Laurie Michley(sp?) Has dogs which can smell PD.
@@joshuabriggs7114 Dogs are amazing…some can smell Covid too 🥰
What does it smell like????
@@4merLawman thedillpickle.substack.com/p/the-scent-of-parkinsons-disease-on
@@4merLawman There are great links in my article but if you search for the woman who can smell Parkinson’s her name is Joy and the way she describes it is like sour milk.
To me, it's an old musky smell. But I guess we all smell things differently.
I’m first to reply and I’m subscribed.
@@Michael-he7xnThank you Michael! 🥰❤️
Hypoglycemia can cause freezing
My bf has parkinsons but has no sense of smell or taste. Can u describe tge odor?
There are great links I included as well...thedillpickle.substack.com/p/the-scent-of-parkinsons-disease-on
My hwp to me smells musky, like something left in the wardrobe for a long time. It's hard to describe. Even with a shower every day and clean clothes daily. Some days, it's worse than others. He can't smell it.
I’ve been thinking my smell has changed and I’ve definitely been sweating more. I’m 1 year in with my diagnosis but 3 years of managing noticeable changes. Started to notice a change in my smell over a year ago. Never thought it had anything to do with all the other stuff until I heard about the Scottish woman Joy Milne being able to smell PD.
Very interested in learning more able C/L possible having the side effect of FOG. I do not have gait freezing yet but if taking CL might increase my chances of it, I definitely want to know this! I’ll be looking into that, thanks for the heads up. And thank you for sharing and your channel, it has really helped me.
@@ctaylorcaron25 The painful irony is from what I have read, and I'm not a doctor but you can check out the research paper I read from, is that C/L is the most effective treatment of FOG and also may increase it?! Keep in mind this is still being debated but I do think it's important to know ❤
Trying to subscribe...how?
Google The Dill Pickle Substack…It should prompt you to subscribe for free or as paid ❤️ Thank you Dave! 🥰
Good luck in Washington. And a happy 2025 anyway 😊
Thank you!! Will keep everyone posted 🥰
Good morning, have you considered Semaglutide? It’s really helped me the last 6 months. I know there are several trials currently, hopefully some good results coming.
Hi Anthony, I haven’t but am
all for drug repurposing!! 🥰
I think it's the carbadopa levadopa that you smell
@@jnm.624 I think you should read this 🥰 www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di
I am three years diagnosed with PD and it’s progressing fast (in my opinion). Last fall I started noticing freezing of gait when i would come to stairs. I would just stop at the top or bottom of stairs and it was like my brain was trying to figure out how to navigate the stairs. It scared the heck out of me. My Dr. put me on amantadine and added immediate release Carbidopa-levodopa to add to my regular amount. And as of now 1-1/2 months in, it’s made a world of difference. I think the amantadine is what is really helping. I was also starting to have dyskinesias as well which the amantadine seems to have helped…..for now.
Love your channel. Thanks for all you do. Happy new year.
John
Hi John! That is great to hear that the adjustments your doctor made has made a big difference. FOG is a strange thing when it strikes, and just like you said, stairs or coming up to something different can bring it on. Thank you for your kind words and for watching ❤️