Hi Pamela. Thanks for taking the time to watch. I hope you find the answers you are looking for, would be interested to know what your neurologist says. Feel free to check out the rest of my channel :)
I understand. I was diagnosed with Parkinson's Disease in 2004, I was 45yrs old. Currently, I am taking Sinemet 50/200. Also, I try to exercise as much as my body allows me. I have tremors and cognitive issues. Having this disease for 20yrs I seem to be doing ok! You are not alone if you feel like reaching out please, do not hesitate.
Hi Rafa. Thanks for your encouragement and for taking the time to watch. I am doing everything I can to feel better. I hope you are doing well since your diagnosis. It is amazing how many people I have met so far that have had the same symptom set, so difficult to identify and diagnose. I find it amazing how many different symptoms Parkinson's can produce.
@@LifewithParkinsons Thanks for your quick and kind reply. A few months back I also made a video (mostly putting together clips from movies and using them in another context, half serious, half joking) trying to cheer myself up. I don't know whether you share my mood about it but anyway, this is the link: th-cam.com/video/58n7Gckzq78/w-d-xo.html Please ignore mispellings, English is not my mother tongue. Rafa
Good morning, please keep the information coming. Who was diagnosed around 8 years ago. How have you been up. Pretty confused this morning. Maybe this type of problems you could address on show.
Wow, David we had very similar experiences. I am 56yod, diagnosed May 27,2018. One day after my bd. I too have more movement disorder than tremors and it’s mainly on my left side. I am declining quickly even with meds. My mom had PD and most of her sisters had neurological problems. I look forward to more of your videos.
Hello, Hawaii Girl. Yes, it does sound like our symptom sets are very similar. It sounds like you may have had a stressful birthday waiting for your diagnosis. I have been loosing lots of muscle mass also lately, even with meds and exercise. The muscle loss has led to me losing my balance a lot, which I am trying to fight back by going to the gym. I don't want to start falls at such a young age. Thank you for your kind words. I will be publishing more videos soon.
Good morning David, thank you for including my comment. Some of the difficulty is trying to explain symptoms to other family members. Was changing symptoms and going through family issues. It has been since 2013 my first diagnosed then things got strange. Going around to the doctor several times and that was when I started going to the doctor several times. I was chasing down any possibility. First thought where to go to Mayo Clinic. Well somehow we never went running down to the clinic. Then the next 10 years to lack of exercise and other factors exercise programs never falls through my thoughts on exercise with the what to use going to happen anyway. I failed to see a lot of other benefits from exercise and day-to-day dealing with. Won't make a difference anyway right, and results, how is the thing you're most afraid of coming to grips. Only then did I turn to a social network for Parkinson's. I have found that this group help each other. How's the problem history of Strokes complicated many difficulties. Reach Out to some of the social networks for Parkinson's. The team activity how few of you and idea of what each other how dealing with that how we can do? This is been one area that we hear about and also participate. This may be an area that you may not have considered. Check it out it may be helpful.
Thank you so much for making this video. I am currently awaiting an MRI and an initial exam by a neurologist to see if I, too, have Parkinson's disease. The list you gave of your early symptoms and the timeline with which they appeared is incredibly similar to my own, right down to having our left sides as the weaker ones. I've been trying to explain to my husband what my symptoms are and how they affect me, as some are more apparent than others, and I plan to share your video with him as verification of my concerns. Again, thank you for sharing your story with us, and may the Lord bless you and keep you each day.
Hi Jeannine. I am glad you are seeking professional confirmation regarding your symptoms, that's the most important thing to do. That being said, you know your body best since you are living in it, and it is difficult to ignore when something isn't right. Kind of like you feel like you are going crazy and you don't know why. I would be interested to know what your neurologist says. Thank you for your kind words, and I am glad you found my story. Feel free to share any video as this channel is meant for that.
Hi David, there's so much happening when first diagnosed I had no idea of what was happening. I thought that was just getting shakes. The ups and downs very hard to deal with. It is helpful to hear from others going to be experiences. Thank you I'll forward to hear more from you.
Hi Gary. Yes, when getting your diagnosis a lot Is going on. You don’t know what’s going on and you don’t know if you’re going crazy. Thanks for watching and saying hi. Feel free to stick around for more.
@@LifewithParkinsons hi there, trip to these are the neurologist today. I don't know I never look forward to those. How down to the diagnosed yet 2013. Hasn't really a smooth Road. Unfortunately ended up with feeding tube, wheelchair and another catheter for. Failing bladder we're not going to all of it many of you has bad experiences during the battle against as how do you find that is helpful hear from others. Since the disease is never the same for everyone can then all the way awesome to deal with a disease. I'm following. Wish everyone have a good day good night
@@garypillans1983 Hi Gary, best wishes for your appointment. I'm not a big fan of those either. Your road has definitely not been a smooth one. Sorry to hear about the feeding tube, catheter and wheelchair. How is your mobility in bed?
Hi David, there's a strange night this morning my blood sugar very low this morning. Well I mentioned many of the bad points and my illness I would also like to pass on with the good point. Yeah believe it or not there are some. Well I have been dealing with many issues and other illnesses I want to try to say as positive as I can. This is a Outlook and I'm trying to work tonight over the last few years I have had a very negative attitude. And I got a new physical therapy, which I had refused for many years and that I had believe that the end result what do same so I do refuse to participate. All the doubt the problems still here and as we all know we'll continue and increase. My wife has seen the Improvement an attitude change. For the past and present and not really good now that's increasing. I am going to try to fight the disease as much as possible. Depression is still a problem and dealing with this. I just wanted to tell you that okay that's a good point everything takes a little breather. I was still complain about the problems having with illness. The experiences have seen or p a s t from others is helpful to share. They can give us another Outlook but too together thanks I do look forward to stay and active participant on your site. Having to hear experiences from others while many negative facing Us is everything that is coming out during the program. Active participation and some of the activities be very beneficial. I had played the drums for 40 years. What's the problem started and that goes I thought that my drumming days for over. There have been many activities thought we have lost even sitting in a wheelchair listen to the doctor tell me it's not drive anymore. It is very strange but at that point are very angry. Actually I did understand but being told that's okay hey it did not possibly not at least not want to believe it. First bedroom I'm trying to send usual issues your way but I am also want to try to pass on some positive. I look forward to hearing from you. Good night and have a good day tomorrow.
Me too i was diagnosed with Parkinson disease. Taking levodopa Carbidopa 4X. I feel better my meds is like my gasoline in order to do my everyday routine need to take my meds.
Hello, I know what you mean, the meds are like my fuel also. Sorry you got diagnosed with PD, but glad you found the channel. Thank you for saying hello, 😀😁😊
Yep, our diagnosis stories are very similar. My Neuro was cautious as I didn't fit the normal movement criteria. No tremors or shaking. Just stiffness and PAIN! Pain in the legs from knees to hips. I thought I had Polymyalgia Neuropathy. As I also had a lot of shoulder pain. So I worked with my rheumatologist for several years as well as my Dr. Nothing! No answers or help for years. They tried but it didn't dawn on anyone for me to see a neurologist. How I got to be with one was being tested for small fiber neuropathy. Which I tested positive for. It is a lot of hoops and time to figure this out for sure
Wow, thank goodness you didn't have any operations. Thankfully you saw a neurologist who was able to spot the symptoms. PD is so difficult to spot sometimes, there needs to be awareness.
15 things was not always easy and I felt very unsteady on my feet especially with heavy objects. Spring winding syndrome is just part of the job. It happens when you only use one side of your body say just your right arm to wind the springs on the garage door instead of sharing the load between the two arms which you're supposed to do. 😊😄😃
@@LifewithParkinsons great explanation 😂💯 that's, I have something were Iv got tremors that are uncontrollable when liffting heavy weights, or fur example doing a movement under exream strain, in 38 waiting to see neurologist in the UK it's over 2 year list, pd in the family., thanx
Thank you David for honestly describing your experience. It helps people a lot when they share their experiences. I was diagnosed one year ago. Over many years I was exposed to chemicals - paints, thinners, wood stains, plasters, and other construction materials. My symptoms started to appear after I had heart bypass surgery five years ago and especially three years later when I was put on blood thinners, ticagrelor and plavex. It seems the blood thinners were the main trigger.
Hi, Konstantine. I'm glad someone was able to figure out that you have Parkinson's, it sounds like you had a host of things that could have been the trigger. I've been surprised how much my life has changed since I was diagnosed, and I am hoping that others can find help for their symptoms as well.
Hi David sorry for the confused this morning okay. I was diagnosed how long did you go myself how did you need update and what's going on keep the information going have a good morning thanks
Hi david my p d started left side im left handed could not hold pen or scanner phone dock said was tenis elbo on 8 carbodopa c r at night wit mirtazapine 12 vears with p d not u keep up good work
Hi Peter, thanks for saying hello and for sharing a bit of your PD journey. That is rough, getting your major symptoms on your dominant side. I hope that you can find some partial remedies that can help. If you have any questions let me know, info@lifewithparkinsons.ca 😊😁😀
What kind of exercises helps you with strengthening? I am rigid. I get PD exercises & stretching from TH-cam. Due to COVID I prefer to do it at home. I tried zooming with a PT and that was difficult for both of us. Do you swim?
I've got three workouts set up at the gym that I do, which basically cover the three main muscle groups; push, pull, and legs. I use the "Strong" app on my phone to track my progress which is great. Thankfully I've regained some muscle back and my balance has gotten better. I understand the rigidity issue totally, and doing sessions over Zoom with someone can be awkward. I've had my meds adjusted to help with the movement. If I lived in Hawaii I might swim everyday, but since I've only been there once I don't see it happening. I find the whole process of going to the pool laborious. I find the gym a lot more accessible and the cleanliness a step up as all the members take COVID prevention seriously, and everyone sprays and wipes down the equipment. I tend to go when it's quieter so the anxiety is easier to deal with.
We moved to Seattle from Honolulu 15 yrs ago, ironically to help my sister with her Guille Barre illness. Thank you for your advice. The anxiety is getting worse for me too and depression. I will try to continue on strength training. Keep us posted on your journey, love your honesty & videos.
Did your difficulty with your hand come and go in the beginning? I'm having parkinsonism symptoms (I think) but they come and go...like with my left hand (it will be slow and stiff as if my muscles are made of jerkey) and sometimes I find myself dragging my left foot. It's worse with lack of sleep or emotional stress or intense deadlines (i went to the emergency room once because my left arm was shaking so much but they said it was stress....my poor, stressed left arm...needs to take a lesson from my right arm, apparently) Then sometimes, everything is normal. My vision comes and goes also. I thought it was just age (I'm 47) but then my vision would be super clear one random day. I've traced my symptoms back to starting after a bad respiratory virus at age 40 coupled with subsequent grief/trauma. I am struggling with gut issues now, which were never an issue for me before. It's been a slow, insidious onset. I've seen countless specialists but so far, I'm the only one who is concerned something is wrong.
Hi K M. Yes the difficulty with my left hand would come and go in the beginning. Yes, lack of sleep or anxiety worsens the symptoms, PD also affects my vision. Have you seen a neurologist of a movement disorder specialist? It sounds like you have a real problem.
I was diagnosed with Parkinson’s disease May of 2021. I noticed some symptoms few years before, and tremor about six months prior…. I had know idea what was going i on. Looking back I feel stupid for not knowing.
Hi Wecook. I’m sorry you feel stupid I wish you wouldn’t feel that way. My case was brought to the monthly meeting at the neurology department because they weren’t sure about my diagnosis. It’s really a tough diagnosis I hope you’re doing OK right now thanks for your comment.
I too am waiting to see the neurologist, my appointment is still 2 months out…thanks for sharing your symptoms…
Hi Pamela. Thanks for taking the time to watch. I hope you find the answers you are looking for, would be interested to know what your neurologist says. Feel free to check out the rest of my channel :)
@@LifewithParkinsonshi me to, can I ask what spring winding syndrome is or what you mean? Thanx
I understand. I was diagnosed with Parkinson's Disease in 2004, I was 45yrs old. Currently, I am taking Sinemet 50/200. Also, I try to exercise as much as my body allows me. I have tremors and cognitive issues. Having this disease for 20yrs I seem to be doing ok! You are not alone if you feel like reaching out please, do not hesitate.
Hi Tom, thank you so much for your comment and offer of support. If I get frustrated I will reach out. Glad you are doing well!😊😁😀
Take care and keep your spirits up. I also have PD and went through pretty much the same symptoms.
Hi Rafa. Thanks for your encouragement and for taking the time to watch. I am doing everything I can to feel better. I hope you are doing well since your diagnosis. It is amazing how many people I have met so far that have had the same symptom set, so difficult to identify and diagnose. I find it amazing how many different symptoms Parkinson's can produce.
@@LifewithParkinsons Thanks for your quick and kind reply. A few months back I also made a video (mostly putting together clips from movies and using them in another context, half serious, half joking) trying to cheer myself up. I don't know whether you share my mood about it but anyway, this is the link: th-cam.com/video/58n7Gckzq78/w-d-xo.html
Please ignore mispellings, English is not my mother tongue.
Rafa
Hi Rafa, I put out a new video every Thursday right now.
Thanks, David! I was diagnosed 8 1/2 years ago. I can relate to many parts of your story.
Hi Jeremy. Thanks for your comment. I’m sure you’ve learned a lot in 8 1/2 years.
@@LifewithParkinsons Every day is a new adventure for sure!
Good morning, please keep the information coming. Who was diagnosed around 8 years ago. How have you been up. Pretty confused this morning. Maybe this type of problems you could address on show.
@@garypillans1983 th-cam.com/video/1cOpfVsnVGI/w-d-xo.html
Morning Jeremy disability to a keyboard right back with you
Just catching up on some of your old videos
Hi Abel. The old videos are good but boy things have sure changed over time I was so nervous back then. 😃👍😀
Wow, David we had very similar experiences. I am 56yod, diagnosed May 27,2018. One day after my bd. I too have more movement disorder than tremors and it’s mainly on my left side. I am declining quickly even with meds. My mom had PD and most of her sisters had neurological problems. I look forward to more of your videos.
Hello, Hawaii Girl. Yes, it does sound like our symptom sets are very similar. It sounds like you may have had a stressful birthday waiting for your diagnosis.
I have been loosing lots of muscle mass also lately, even with meds and exercise. The muscle loss has led to me losing my balance a lot, which I am trying to fight back by going to the gym. I don't want to start falls at such a young age.
Thank you for your kind words. I will be publishing more videos soon.
Good morning David, thank you for including my comment. Some of the difficulty is trying to explain symptoms to other family members. Was changing symptoms and going through family issues. It has been since 2013 my first diagnosed then things got strange. Going around to the doctor several times and that was when I started going to the doctor several times. I was chasing down any possibility. First thought where to go to Mayo Clinic. Well somehow we never went running down to the clinic. Then the next 10 years to lack of exercise and other factors exercise programs never falls through my thoughts on exercise with the what to use going to happen anyway. I failed to see a lot of other benefits from exercise and day-to-day dealing with. Won't make a difference anyway right, and results, how is the thing you're most afraid of coming to grips. Only then did I turn to a social network for Parkinson's. I have found that this group help each other. How's the problem history of Strokes complicated many difficulties. Reach Out to some of the social networks for Parkinson's. The team activity how few of you and idea of what each other how dealing with that how we can do? This is been one area that we hear about and also participate. This may be an area that you may not have considered. Check it out it may be helpful.
Your videos are so helpful to me, thank you
Hi Sally, you are most welcome. 😊😃😄
Thank you so much for making this video. I am currently awaiting an MRI and an initial exam by a neurologist to see if I, too, have Parkinson's disease. The list you gave of your early symptoms and the timeline with which they appeared is incredibly similar to my own, right down to having our left sides as the weaker ones. I've been trying to explain to my husband what my symptoms are and how they affect me, as some are more apparent than others, and I plan to share your video with him as verification of my concerns. Again, thank you for sharing your story with us, and may the Lord bless you and keep you each day.
Hi Jeannine. I am glad you are seeking professional confirmation regarding your symptoms, that's the most important thing to do. That being said, you know your body best since you are living in it, and it is difficult to ignore when something isn't right. Kind of like you feel like you are going crazy and you don't know why. I would be interested to know what your neurologist says.
Thank you for your kind words, and I am glad you found my story. Feel free to share any video as this channel is meant for that.
Hi David, there's so much happening when first diagnosed I had no idea of what was happening. I thought that was just getting shakes. The ups and downs very hard to deal with. It is helpful to hear from others going to be experiences. Thank you I'll forward to hear more from you.
Hi Gary. Yes, when getting your diagnosis a lot Is going on. You don’t know what’s going on and you don’t know if you’re going crazy. Thanks for watching and saying hi. Feel free to stick around for more.
@@LifewithParkinsons hi there, trip to these are the neurologist today. I don't know I never look forward to those. How down to the diagnosed yet 2013. Hasn't really a smooth Road. Unfortunately ended up with feeding tube, wheelchair and another catheter for. Failing bladder we're not going to all of it many of you has bad experiences during the battle against as how do you find that is helpful hear from others. Since the disease is never the same for everyone can then all the way awesome to deal with a disease. I'm following. Wish everyone have a good day good night
@@garypillans1983 Hi Gary, best wishes for your appointment. I'm not a big fan of those either. Your road has definitely not been a smooth one. Sorry to hear about the feeding tube, catheter and wheelchair. How is your mobility in bed?
Hi David, there's a strange night this morning my blood sugar very low this morning. Well I mentioned many of the bad points and my illness I would also like to pass on with the good point. Yeah believe it or not there are some. Well I have been dealing with many issues and other illnesses I want to try to say as positive as I can. This is a Outlook and I'm trying to work tonight over the last few years I have had a very negative attitude. And I got a new physical therapy, which I had refused for many years and that I had believe that the end result what do same so I do refuse to participate. All the doubt the problems still here and as we all know we'll continue and increase. My wife has seen the Improvement an attitude change. For the past and present and not really good now that's increasing. I am going to try to fight the disease as much as possible. Depression is still a problem and dealing with this. I just wanted to tell you that okay that's a good point everything takes a little breather. I was still complain about the problems having with illness. The experiences have seen or p a s t from others is helpful to share. They can give us another Outlook but too together thanks I do look forward to stay and active participant on your site. Having to hear experiences from others while many negative facing Us is everything that is coming out during the program. Active participation and some of the activities be very beneficial. I had played the drums for 40 years. What's the problem started and that goes I thought that my drumming days for over. There have been many activities thought we have lost even sitting in a wheelchair listen to the doctor tell me it's not drive anymore. It is very strange but at that point are very angry. Actually I did understand but being told that's okay hey it did not possibly not at least not want to believe it. First bedroom I'm trying to send usual issues your way but I am also want to try to pass on some positive. I look forward to hearing from you. Good night and have a good day tomorrow.
Me too i was diagnosed with Parkinson disease. Taking levodopa Carbidopa 4X. I feel better my meds is like my gasoline in order to do my everyday routine need to take my meds.
Hello, I know what you mean, the meds are like my fuel also. Sorry you got diagnosed with PD, but glad you found the channel. Thank you for saying hello, 😀😁😊
Great video
Yep, our diagnosis stories are very similar. My Neuro was cautious as I didn't fit the normal movement criteria. No tremors or shaking.
Just stiffness and PAIN! Pain in the legs from knees to hips.
I thought I had Polymyalgia Neuropathy. As I also had a lot of shoulder pain. So I worked with my rheumatologist for several years as well as my Dr. Nothing! No answers or help for years. They tried but it didn't dawn on anyone for me to see a neurologist. How I got to be with one was being tested for small fiber neuropathy. Which I tested positive for. It is a lot of hoops and time to figure this out for sure
Wow, thank goodness you didn't have any operations. Thankfully you saw a neurologist who was able to spot the symptoms. PD is so difficult to spot sometimes, there needs to be awareness.
De ji😮
Hello thanx fir sharing, can I ask how you felt lifting things? What did you mean by spring winding syndrome? Thanx 🙏❤️
15 things was not always easy and I felt very unsteady on my feet especially with heavy objects. Spring winding syndrome is just part of the job. It happens when you only use one side of your body say just your right arm to wind the springs on the garage door instead of sharing the load between the two arms which you're supposed to do. 😊😄😃
@@LifewithParkinsons great explanation 😂💯 that's, I have something were Iv got tremors that are uncontrollable when liffting heavy weights, or fur example doing a movement under exream strain, in 38 waiting to see neurologist in the UK it's over 2 year list, pd in the family., thanx
@@swisscheese8628 If tremors are your main issue please check out this video about the VILIM ball, th-cam.com/video/ie3HM18olsM/w-d-xo.html
Thank you David for honestly describing your experience. It helps people a lot when they share their experiences.
I was diagnosed one year ago. Over many years I was exposed to chemicals - paints, thinners, wood stains, plasters, and other construction materials. My symptoms started to appear after I had heart bypass surgery five years ago and especially three years later when I was put on blood thinners, ticagrelor and plavex. It seems the blood thinners were the main trigger.
Hi, Konstantine. I'm glad someone was able to figure out that you have Parkinson's, it sounds like you had a host of things that could have been the trigger. I've been surprised how much my life has changed since I was diagnosed, and I am hoping that others can find help for their symptoms as well.
Hi David sorry for the confused this morning okay. I was diagnosed how long did you go myself how did you need update and what's going on keep the information going have a good morning thanks
Hi david my p d started left side im left handed could not hold pen or scanner phone dock said was tenis elbo on 8 carbodopa c r at night wit mirtazapine 12 vears with p d not u keep up good work
Hi Peter, thanks for saying hello and for sharing a bit of your PD journey. That is rough, getting your major symptoms on your dominant side. I hope that you can find some partial remedies that can help. If you have any questions let me know, info@lifewithparkinsons.ca 😊😁😀
What kind of exercises helps you with strengthening? I am rigid. I get PD exercises & stretching from TH-cam. Due to COVID I prefer to do it at home. I tried zooming with a PT and that was difficult for both of us. Do you swim?
I've got three workouts set up at the gym that I do, which basically cover the three main muscle groups; push, pull, and legs. I use the "Strong" app on my phone to track my progress which is great. Thankfully I've regained some muscle back and my balance has gotten better.
I understand the rigidity issue totally, and doing sessions over Zoom with someone can be awkward. I've had my meds adjusted to help with the movement.
If I lived in Hawaii I might swim everyday, but since I've only been there once I don't see it happening. I find the whole process of going to the pool laborious. I find the gym a lot more accessible and the cleanliness a step up as all the members take COVID prevention seriously, and everyone sprays and wipes down the equipment. I tend to go when it's quieter so the anxiety is easier to deal with.
We moved to Seattle from Honolulu 15 yrs ago, ironically to help my sister with her Guille Barre illness.
Thank you for your advice. The anxiety is getting worse for me too and depression. I will try to continue on strength training. Keep us posted on your journey, love your honesty & videos.
@@hawaiigirl3574 Thank you for your kind words.
Did your difficulty with your hand come and go in the beginning? I'm having parkinsonism symptoms (I think) but they come and go...like with my left hand (it will be slow and stiff as if my muscles are made of jerkey) and sometimes I find myself dragging my left foot. It's worse with lack of sleep or emotional stress or intense deadlines (i went to the emergency room once because my left arm was shaking so much but they said it was stress....my poor, stressed left arm...needs to take a lesson from my right arm, apparently) Then sometimes, everything is normal. My vision comes and goes also. I thought it was just age (I'm 47) but then my vision would be super clear one random day. I've traced my symptoms back to starting after a bad respiratory virus at age 40 coupled with subsequent grief/trauma. I am struggling with gut issues now, which were never an issue for me before. It's been a slow, insidious onset. I've seen countless specialists but so far, I'm the only one who is concerned something is wrong.
Hi K M. Yes the difficulty with my left hand would come and go in the beginning. Yes, lack of sleep or anxiety worsens the symptoms, PD also affects my vision. Have you seen a neurologist of a movement disorder specialist? It sounds like you have a real problem.
I was diagnosed with Parkinson’s disease May of 2021. I noticed some symptoms few years before, and tremor about six months prior…. I had know idea what was going i on. Looking back I feel stupid for not knowing.
Hi Wecook. I’m sorry you feel stupid I wish you wouldn’t feel that way. My case was brought to the monthly meeting at the neurology department because they weren’t sure about my diagnosis. It’s really a tough diagnosis I hope you’re doing OK right now thanks for your comment.
Thanks
Your welcome. I hope it helped.