Re: Driving. The biggest game-changer for me so far has been using a left foot accelerator pedal to drive. My PD tremors are right-sided-arm to toes-and I would have had to stop driving 4 years ago without it. Some are removable heavy plates, some are attached to the floor but also removable, and others are permanently in place. No more need for help from your left or wondering how long you’ll be able to keep driving. Much less stressful drives! I find your channel realistic, thoughtful, and honest. Thanks for your work!
It’s great to know others are going through the same issues as I am. I have realized my toes curl because all the muscles in my leg are contracting. It really helps to do stretches when I first feel the tightness increasing, and before driving home from work.
I had terrible death grip on my steering wheel and handlebar of my motorcycle as well leading up to my diagnosis, it was really frustrating. Thank goodness for getting diagnosed and taking up levodopa!
Dystonia is a pain... figuratively and literally. I use exercise as a method of fighting back against the progression of PD but one of the unfortunate side-effects is that I've put on a lot of muscle so when I get dystonia it's a lot worse (bigger muscles). However, the upside of being more "robust" is that when I fall I just bounce and don't break bones. I would hate to be trying to heal a fracture whilst suffering tremors in the muscles associated with its movement.
Right there with the both of you..My left foot has to be used from time to time just for that just in case on the brake. Just for that little safe, reassurance lol. This last spring and summer my Dystonia was coming out to play. I had a routine of walking, Jogging here and there, if I could in the mornings. My left foot out of nowhere wanted to curl/twist underneath itself. I had to stop and try to relax and flatten it out. It would last up to 5-10 minutes sometime probably..after working on it for a few I could get it to relax. It would vary on when it would happen, couple times a week. Again thanks for sharing. It sucks we're all going through this, but to hear similar stories, helps put the mind at a little better of a place :)
Right on buddy..battle on! Exercise is very important. Do a little everyday. I play ice hockey and mountain bike coupled with lifting weights every morning
My dystonia was in my left foot and started a few years pre-diagnosis. It happened when I ran. After about three quarters of a mile in my left big toe would curl into a hammer lock and it would be painful to run. But continue to run I would and the cramp would dissipate in another quarter to half a mile more. Sometimes on longer runs the cycle would repeat. But all this went away when I started taking Sinemet. This is one of my peeves with the medical community along with PD-induced depression. If it were heart disease or the like your GP or family practice doctor would recognize the symptoms and send you to a cardiac specialist. But this is not the case for PD. I was prescribed medications for depression and was shown ignorance in the case of dystonia but no doctor ever said, "Hmm. I think I know what may be going on - I want to refer you to a neurologist." Could make all the difference in getting a PD diagnosis done more timely.
Thank you! Continue to check out the channel for more. Send it to friends and family so you can share your experience without having to say it yourself!
Thanks for the upload. I'm still quite new to this site and finding it quite informative. I seem to get it all over my body. It normally starts in my foot or neck. My lower back on the right seem to be the most painful. I have suffered from the 'death grip' it seems to ease more often when I try to relax my shoulders and neck.
I’d say judging on both hosts ages that Young Onset was the diagnosis. I have the same and began showing movement symptoms at 34 with the left pinky tremor. However now with all my research (since 1997 when my father was diagnosed) I have found that I’ve had it for decades and possibly since I was a late teenager. This is where my studies come in and I’d like to focus on those teenage years along with the last 20 years prior to anyone receiving a Young Onset diagnosis. With that humans can understand what to look for and what to avoid when it comes to food and drugs! Exercise is the utmost important factor as well and what kept it at bay for me. Once I stopped exercising and began caretaking for my Father my symptoms went thru the roof unfortunately. 🙏🏼
Omgosh I have the steering wheel death grip too! Sorry but it’s comforting knowing others know what this is! You two talk about your toes curing down but I’ve noticed when I’m driving my L-foot is very tense and it feels like my foot or toes want to lift up or back. Have you ever experienced that?
@@GoProGoalieUzi You know it! Everyday. Even the little victories matter. Keep the head up and the eye on the prize. We're not alone keep fighting there too!
Glad you are enjoying our videos. We have more coming! Trying to post 2 each week. I'm almost 3 years in and Brian is about 6 years in - it's nice to finally be at the phase where we can find a little humor along with educating others about our experiences. Thanks for subscribing!
Living in Melbourne Australia 68 yo, and finally I'm hearing people describing the same problems as myself although my dystonia started 6.5 years after diagnosis. And wow! I have been occasionally holding the steering wheel with my left arm held out straight and gripping it tightly while pushing my body into the seat like a formula one driver 😂and never thought of Dystonia as the reason.. I find walking on tiptoes in bare feet or socks stops the toes curling, enabling me to get around the house. I was considering high heels thinking it would be like walking on tiptoes, there goes that idea 😭..... 🤣🤣Left side effected by Parkinson's, Dystonia doesn't discriminate getting it both feet at the same time, my right arm where it draws my upper arm into my body making shaving impossible, mouth and abdomen making singing and playing harmonica both things I Iove doing difficult. Fortunately during fully on times it resolves. Thanks for sharing your experiences, you've made my day!
You mentioned that you had a medication change that helped. Was that a dosage change or a different medication? I relate so much to your dystonia symptoms.
Back from episode #5, I was probably referring to my change from Ropinirole (dopamine agonist) to Carbidopa Levodopa. I had to get off Ropinirole because I became addicted to work. Dopamine agonists are known to cause addictions or obsessions...usually with gambling or shopping. But it can be to anything. Anyway, that's when I switch to C/L. Most recently, around episode #106, I went from 2 C/L at four times a day down to 1.5 C/L at four times a day because my arm pain was relieved from physical therapy and the 2 C/L at a time were making me dyskinetic. Hope this helps!
@@thesecretlifeofparkinsons Thank you so much Jessica, for the detailed response! Very much appreciated. Thanks for what you are doing for this community. Looks like I will be going the path of botox injections to ease the foot dystonia pain. We'll see how that goes. Take care.
Every once in a while my toes on my left foot decide they want nothing to do with each other. They try to stay arms length away from each other. That's when I firmly put them on the ground and tell them to get along. lol It always seems to happen at night....right when I get comfy in bed. They're so rude.
My right toes are stiff. They arent able to bend at all. Hurts. I wear shoes from the moment i get up to when i lay day. If i try going without them the pain of walking leaves me way more uncomfortable.
Holy crap I have the same dystonia gravitation magnet stuck together thing but with two of my fingers! As for my foot, my big toe sticks upward when walking while my others curl downward. I have dystonia and going through the motions of finding a cause whether pd or something else. I will be starting Artane soon so we shall see if that helps.
Hi! Thanks for the response! It’s called trihexyphenidyl but I guess the more common brand name was Artane. It’s a synthetic anticholinergic antimuscarinic medication prescribed to treat muscular issues of Parkinsoism either on it’s own or with levodopa/carbidopa. Unfortunately they didn’t prescribe carbidopa/levodopa. I was reading more into it and apparently it isn’t commonly prescribed because it has been linked to dementia. I started taking it a few days ago, it really helps the dystonia part but my brain is definitely foggy / forgetful. I’m just not sure about the longevity of this medication because of the side effects. I was hoping they would prescribe levedopa/carbadopa so I could do the test but I feel they’re weary of diagnosing me because I’m still in my 20’s (well, late 20’s). They’ve told me a have a lot of Parkinsonism symptoms but my mri looked normal. (This was kind of a red flag because Parkinson’s should never be diagnosed using an mri, mri should be used to rule out other diagnosis) I’m gonna give my doctors one more try and then if I get nowhere I may consider searching for a good movement disorder specialist
Realised many people have this problem. I do. I had DBS surgery last November, it help but last week that issue I back. Looking for advice. I have heard that cutting the toes tendons can help? Botox doesn't help.
I thought dystonia was your head shaking. Everything I have read about it and doctor s have told me it's more the head then anywhere. Cervical dystonia is head shaking. I have it it's horrible
From my understanding, dystonia can affect any part of the body, including the arms, legs, face, and vocal cords. I'm sorry you are dealing with cervical dystonia. Curious to know if medication or any other types of therapies provide any relief?
@@thesecretlifeofparkinsons unfortunately, meds don't work for me. My right arm also has a resting tremor now so I will be seeing a neurologist soon for possible Parkinson's
Oh wow! I didn't know the death grip on the steering wheel was a Parkinson's thing. Does anyone else have that same feeling in their body or jaw clenching?
Re: Driving. The biggest game-changer for me so far has been using a left foot accelerator pedal to drive. My PD tremors are right-sided-arm to toes-and I would have had to stop driving 4 years ago without it. Some are removable heavy plates, some are attached to the floor but also removable, and others are permanently in place. No more need for help from your left or wondering how long you’ll be able to keep driving. Much less stressful drives!
I find your channel realistic, thoughtful, and honest. Thanks for your work!
It’s great to know others are going through the same issues as I am. I have realized my toes curl because all the muscles in my leg are contracting. It really helps to do stretches when I first feel the tightness increasing, and before driving home from work.
I totally agree! Thanks for sharing and checking out our podcast!
So glad I found this channel. Thank you for sharing these symptoms it helps to know about others. I lead a pretty isolated life
We know how you feel. I hope you continue to listen and know you are not alone…even though you feel like you are.
This is good information .My husband has this Dystoni really bad and we need help, please
I had terrible death grip on my steering wheel and handlebar of my motorcycle as well leading up to my diagnosis, it was really frustrating. Thank goodness for getting diagnosed and taking up levodopa!
Dystonia is a pain... figuratively and literally. I use exercise as a method of fighting back against the progression of PD but one of the unfortunate side-effects is that I've put on a lot of muscle so when I get dystonia it's a lot worse (bigger muscles). However, the upside of being more "robust" is that when I fall I just bounce and don't break bones. I would hate to be trying to heal a fracture whilst suffering tremors in the muscles associated with its movement.
I loved my high heels. I’m short and l loved the way I looked in heels. Dyskinesia changed my wardrobe.
Right there with the both of you..My left foot has to be used from time to time just for that just in case on the brake. Just for that little safe, reassurance lol. This last spring and summer my Dystonia was coming out to play. I had a routine of walking, Jogging here and there, if I could in the mornings. My left foot out of nowhere wanted to curl/twist underneath itself. I had to stop and try to relax and flatten it out. It would last up to 5-10 minutes sometime probably..after working on it for a few I could get it to relax. It would vary on when it would happen, couple times a week. Again thanks for sharing. It sucks we're all going through this, but to hear similar stories, helps put the mind at a little better of a place :)
Right on buddy..battle on! Exercise is very important. Do a little everyday. I play ice hockey and mountain bike coupled with lifting weights every morning
It is nice to hear similar stories. And even better when we can try and help with how we each work through it!
My dystonia was in my left foot and started a few years pre-diagnosis. It happened when I ran. After about three quarters of a mile in my left big toe would curl into a hammer lock and it would be painful to run. But continue to run I would and the cramp would dissipate in another quarter to half a mile more. Sometimes on longer runs the cycle would repeat. But all this went away when I started taking Sinemet. This is one of my peeves with the medical community along with PD-induced depression. If it were heart disease or the like your GP or family practice doctor would recognize the symptoms and send you to a cardiac specialist. But this is not the case for PD. I was prescribed medications for depression and was shown ignorance in the case of dystonia but no doctor ever said, "Hmm. I think I know what may be going on - I want to refer you to a neurologist." Could make all the difference in getting a PD diagnosis done more timely.
These videos are wonderful! They have given me a lot of encouragement. Keep up the good work!
Thank you! Continue to check out the channel for more. Send it to friends and family so you can share your experience without having to say it yourself!
Thanks for the upload. I'm still quite new to this site and finding it quite informative. I seem to get it all over my body. It normally starts in my foot or neck. My lower back on the right seem to be the most painful. I have suffered from the 'death grip' it seems to ease more often when I try to relax my shoulders and neck.
Glad you are enjoying the podcast!
I’d say judging on both hosts ages that Young Onset was the diagnosis. I have the same and began showing movement symptoms at 34 with the left pinky tremor. However now with all my research (since 1997 when my father was diagnosed) I have found that I’ve had it for decades and possibly since I was a late teenager. This is where my studies come in and I’d like to focus on those teenage years along with the last 20 years prior to anyone receiving a Young Onset diagnosis. With that humans can understand what to look for and what to avoid when it comes to food and drugs! Exercise is the utmost important factor as well and what kept it at bay for me. Once I stopped exercising and began caretaking for my Father my symptoms went thru the roof unfortunately. 🙏🏼
Omgosh I have the steering wheel death grip too! Sorry but it’s comforting knowing others know what this is! You two talk about your toes curing down but I’ve noticed when I’m driving my L-foot is very tense and it feels like my foot or toes want to lift up or back. Have you ever experienced that?
Yes! Same thing!
Thank you for the videos and laughs! Just found your channel and subbed. I am a little over 4 years into my battle.
Headed into year 6 here. i'll be 46 this year too.
@@chrisc9259 I’m 44..battle on buddy!
@@GoProGoalieUzi You know it! Everyday. Even the little victories matter. Keep the head up and the eye on the prize. We're not alone keep fighting there too!
Glad you are enjoying our videos. We have more coming! Trying to post 2 each week. I'm almost 3 years in and Brian is about 6 years in - it's nice to finally be at the phase where we can find a little humor along with educating others about our experiences. Thanks for subscribing!
Dystonia has been one of my major P.D. symptoms. Even my recent D.B.S. surgery hasn't helped yet.
You guys Rock!
Living in Melbourne Australia 68 yo, and finally I'm hearing people describing the same problems as myself although my dystonia started 6.5 years after diagnosis. And wow! I have been occasionally holding the steering wheel with my left arm held out straight and gripping it tightly while pushing my body into the seat like a formula one driver 😂and never thought of Dystonia as the reason.. I find walking on tiptoes in bare feet or socks stops the toes curling, enabling me to get around the house. I was considering high heels thinking it would be like walking on tiptoes, there goes that idea 😭..... 🤣🤣Left side effected by Parkinson's, Dystonia doesn't discriminate getting it both feet at the same time, my right arm where it draws my upper arm into my body making shaving impossible, mouth and abdomen making singing and playing harmonica both things I Iove doing difficult. Fortunately during fully on times it resolves. Thanks for sharing your experiences, you've made my day!
You mentioned that you had a medication change that helped. Was that a dosage change or a different medication? I relate so much to your dystonia symptoms.
Back from episode #5, I was probably referring to my change from Ropinirole (dopamine agonist) to Carbidopa Levodopa. I had to get off Ropinirole because I became addicted to work. Dopamine agonists are known to cause addictions or obsessions...usually with gambling or shopping. But it can be to anything. Anyway, that's when I switch to C/L. Most recently, around episode #106, I went from 2 C/L at four times a day down to 1.5 C/L at four times a day because my arm pain was relieved from physical therapy and the 2 C/L at a time were making me dyskinetic. Hope this helps!
@@thesecretlifeofparkinsons Thank you so much Jessica, for the detailed response! Very much appreciated. Thanks for what you are doing for this community. Looks like I will be going the path of botox injections to ease the foot dystonia pain. We'll see how that goes. Take care.
Glad I could help!
Quick question, Brian mentioned that some of his symptoms come and go. Is that common?
Every once in a while my toes on my left foot decide they want nothing to do with each other. They try to stay arms length away from each other. That's when I firmly put them on the ground and tell them to get along. lol It always seems to happen at night....right when I get comfy in bed. They're so rude.
So rude is right!! Haha!
My left hand has the death grip on the steering wheel every time I drive and my right is loose goose.
I know how that feels!
My right toes are stiff. They arent able to bend at all. Hurts. I wear shoes from the moment i get up to when i lay day. If i try going without them the pain of walking leaves me way more uncomfortable.
I hope you find relief!
Holy crap I have the same dystonia gravitation magnet stuck together thing but with two of my fingers! As for my foot, my big toe sticks upward when walking while my others curl downward. I have dystonia and going through the motions of finding a cause whether pd or something else. I will be starting Artane soon so we shall see if that helps.
I'm not familiar with Artane. Do you take Carbadopa/Levedopa?
Hi! Thanks for the response! It’s called trihexyphenidyl but I guess the more common brand name was Artane. It’s a synthetic anticholinergic antimuscarinic medication prescribed to treat muscular issues of Parkinsoism either on it’s own or with levodopa/carbidopa. Unfortunately they didn’t prescribe carbidopa/levodopa. I was reading more into it and apparently it isn’t commonly prescribed because it has been linked to dementia.
I started taking it a few days ago, it really helps the dystonia part but my brain is definitely foggy / forgetful. I’m just not sure about the longevity of this medication because of the side effects. I was hoping they would prescribe levedopa/carbadopa so I could do the test but I feel they’re weary of diagnosing me because I’m still in my 20’s (well, late 20’s). They’ve told me a have a lot of Parkinsonism symptoms but my mri looked normal. (This was kind of a red flag because Parkinson’s should never be diagnosed using an mri, mri should be used to rule out other diagnosis) I’m gonna give my doctors one more try and then if I get nowhere I may consider searching for a good movement disorder specialist
I agree! Look for a movement disorder specialist! I hope you find relief!
Newly diagnosed. I guess that's what's going on with my right arm
Realised many people have this problem. I do. I had DBS surgery last November, it help but last week that issue I back. Looking for advice.
I have heard that cutting the toes tendons can help?
Botox doesn't help.
I have not heard of the tendons in the toes, but I have heard of Botox. Hopefully the MDS or surgeons have more ideas.
In early stages would you be able to stop your toe or no?
No, I don't think so. But I haven't had that issue now for a few years because of the medication and exercise.
I thought dystonia was your head shaking. Everything I have read about it and doctor s have told me it's more the head then anywhere. Cervical dystonia is head shaking. I have it it's horrible
From my understanding, dystonia can affect any part of the body, including the arms, legs, face, and vocal cords. I'm sorry you are dealing with cervical dystonia. Curious to know if medication or any other types of therapies provide any relief?
@@thesecretlifeofparkinsons unfortunately, meds don't work for me. My right arm also has a resting tremor now so I will be seeing a neurologist soon for possible Parkinson's
Oh wow! I didn't know the death grip on the steering wheel was a Parkinson's thing. Does anyone else have that same feeling in their body or jaw clenching?
The steering wheel is the only place I recognized it, but even then I didn't think about it until Brian said something!
Try taking magnesium daily
You're not afraid of the DMV or your insurance company seeing this and canceling you?