I remember in my early 30's (maybe late 20's), I went to the doctor's a few times complaining about extreme fatigue. They could never figure it out so I stopped going to the doctor about it cause it started to make me feel like I was crazy or something. Now I'm definitely thinking it was the early stages of my PD. Good breakdown of symptoms.
In my 20s, I went back and forth to the doctor with extreme fatigue and other symptoms and after a lot of testing I was diagnosed with chronic fatigue syndrome. I've since wondered if that wasn't an early symptom of Parkinson's. I've asked my neurologist but she doesn't think so but I'm not so sure myself.
The crazy anxiety is part of PD? That right now is my biggest issue. Mine starts about 3AM and lasts about 12 hours. I'm fearing the worse about everything and then sometime in the afternoon. everything is all good. I'm so glad to know I'm not alone.
Hi Yartp. Yes, anxiety is, and has always been, the biggest symptom for me, but there is decent medication for it, and other things help as well. No, you are not alone, let's take this journey together.😀😁😊
Hi Dave, how are you? My name is Joey. I was just recently diagnosed with early-onset Parkinson's in January of 2024. I can relate to one of your symptoms. Fine motor skills. Losing fine motor skills in the left hand. Yeah, shame on this left hand, eh? thank you so much for your story. God bless you.
Hi Joey, I am doing well. Thanks for your comment. Checked out your channel. If you keep posting let me know, I will follow and perhaps we can collab on something.😀😁😊
@LifewithParkinsons Hello Dave, how are you? Oh, that would be fantastic. I would really love that. Sure, I will keep posting and hopefully we can do something together very soon. I will be looking forward to that. Thank you so much. Let's keep in touch. God bless you. I will keep you in my prayers.
The first symptom I noticed was 4 years ago when i had trouble holding a guitar properly as my left wrist was stiff, soon after I started having trouble typing with my left hand. This stiffness spread to the rest of the arm so eventually i had a nerve conduction study done but my nerves were fine. By then I'd been having trouble with my gait. It felt like my left arm not swinging naturally messed up my walking, plus i started to have trouble keeping up with other people. Id been racing motocross and every year since 2019 I'd been getting slower to the point where i was getting lapped by guys i used to be competitive with. Finally i saw a neurologist and was diagnosed in September 2023. Until then I'd thought of the possibility of something being really wrong but since i haven't had a resting tremor i didn't think Parkinson's. But thats what it is. Medication has helped so it feels more inconvenient than debilitating at this point. I'm still riding my dirt bike, just not racing. And I don't work any overtime at work. Given some of the things i was worrying about, like als, the Parkinson's diagnosis was almost a relief though I know there are some challenges ahead - but that's true for everyone ar some level. Thanks for sharing your story!
Hi Mark, thank you for sharing a part of your story. It is good that you were able to get the help that you need. Yes, PD is progressive, and the speed of that progression appears to be different for all. Let's all stay in the game for as long as possible!😊😁😀
Thanks David. I know this video is a year or so old, but i was relieved to come across it. I have most symptoms you describe. From sense of smell issues to anxiety and clumsiness, andd the fatigue is overwhelming. My fine motor is dulled, especially on the left, and handwriting has become terrible. i have mental slowness as well as physical slowness, and as a farm worker, it does make things difficult. y dr diagnosed fibromyalgia (which i reject) because of the terrible bouts of pain, which i know is from stiff muscles. Unfortunately, now, any dr attributes averything to fibro instead of looking for the real reason. I dont know if i have parkinson's or not, but the years long list of issues is driving me crazy. Thankuou for your very hlpful video
Hi Jinja, thank you for your comment, but am very sorry that you may be misdiagnosed. I know it has happened to many people who have left comments, and it is terrible. I really hope you are able to see a different doctor and get the help that you need. Perhaps there is someone that can go with you to see your doctor and push for a re-evaluation? Parkinson's is so difficult to diagnose and recognize for some. Please let me know how it turns out for you.😊😁😀
It's helpful to hear about other PWP experiences because it reminds us we're not alone. Very relatable. Thank you for sharing. Love the backgrounds, too!
Diazepam, is an excellent muscle relaxant . I’m not taking any PD meds. Was diagnosed Nov 2017. My neurologist is aware of my prescribed meds . They help , or so I thought until “ I fell flat on my nose” . On 18 th December . Thank you for sharing.
Thanks for sharing, David. Your videos are very helpful, insightful, and relatable. During my long wait for my first appointment with the movement disorder specialist (scheduled for end of July 2023) I have considered logging my symptoms. Your request to viewers to share their pre-diagnosis symptoms has catalysed this process… so here goes! Looking back on things my first symptom, which came on in about mid-2019 was a stiffness in my left hand which made typing problematic - I put it down to repetitive strain injury. I first noticed uncontrollable tremors on 3 January 2021 - I put it down to the cold UK winter. Shortly afterwards, I began to develop a quiet, monotone, hoarse and slurred voice with occasional stammering - I then suspected something neurological. In no particular order, I also experience following symptoms: slowness and stiffness of movement; awkward and poorly coordinated gait, especially first thing in the morning; decreased flexibility; problems with fine motor coordination on my left side (fortunately I’m right-handed); stinging eyes; difficulty swallowing and frequent choking on food; blocked sinuses; mucus build-up and drooling; persistent throat clearing; masked facial expression which makes me look like I am angry or vacant even when happy and engaged; facial skin tightness - feels like my face is splattered with bubble-gum; anxiety; and increasingly illegible handwriting - although my handwriting was never great to be fair. Common PD symptoms that I have not yet experienced include: insomnia; extreme fatigue; freezing; poor balance; loss of sense of smell - if anything I’ve experienced a heightened sensitivity to odours such as strong perfumes; gastrointestinal disturbances; and loss of cognitive function. I do, however, find that the extended gap between the thoughts and the words coming out of my mouth means that I sometimes lose my train of thought. More commonly, I get left behind in conversations because of my problems vocalising!!
Hi John, thank you for sharing such a complete list of what you are going through, it will definitely help with your diagnosis. I'm sure getting Parkinson's isn't on your list of fun things to do, but we are glad you made it here. I definitely understand getting left behind in conversations, it happens to me as well. I thought you would like this video if you hadn't seen it yet, th-cam.com/video/5xhQXhVzyyY/w-d-xo.html How to make the most of your neurology appt. Thanks for saying hello, and welcome here!
@@LifewithParkinsons . Thanks for the warm welcome and all the work you are doing. Great tips in the How to make the most of your neurology appt. . I will get to work on those lists!!
Wow you explained things I never would have even thought were related . Always been slower than others but i made up by being thorough in comparison of speed . One boss use to say I had 2 speeds , slow and stop . Lmgo . But he said he knew he would never have a call back , never by me . I use to have a lot of anxiety starting the day. Just figured it was because of the job and my professional abilities . Overtime , I loved it . I am on week 3 of med ( carbadopalevadopa ) , seems like tremors/ shakes has settled off , haven't noticed last 4 days . Great video and wishing you better days brother
Hi Jerry, glad to hear the meds are helping, what a relief. Interesting how you had a similar experience of anxiety. Sounds like you had a good boss. Wishing you better days as well. 😀😀😊
@@LifewithParkinsons yeah that boss reminded me of Mr Hayney from Green Acers. He had the gift with words . Died In 2020 at 45 , diabetes . Lost 2 different previous bosses that month and buried 2 other coworkers the month before on my birthday . Crazy , not 1 but 2 funerals on my birthday . Yeah it's all I know is work , was a workaholic , and loved the OT and DT
Thank you for sharing your story. I've had troubles with my eyes for around 3 years now and have tried finding out why (I have a video of how I perceive text), I've been to 3 eye doctors and one of them suspected it might be neurological so I've tried to get to see a neurologist but the healthcare system just keeps brushing me off. They always tell me I'm to young to have a neurological disease but as we all know anyone can get it. However as of late I've noticed I've begun struggling with visual interpretation / decoding. Like I can see but I have no idea what I'm looking at for like 3-5 sec I also have a very bad sense of smell, tend to misspell things (which I never did before) and I've got muscle facilations (mostly in my thigh and right thumb). Also I don't know if it's normal but when I'm drifting of to sleep and accidentally think of something scarry, like imaging something jumping towards me I physically react; I get adrenaline and jump back. Also anxiety but I've had that since I was like 15, I'm 27 now.
Hi Pat, I lost that eventually too, but it's amazing sometimes how our stories can be so similar. I don''t know about you, but I feel less alone and isolated when someone else understands. Thanks for your comment.😀😁😊
Hi dave new subscriber here. Almost everything you mentioned is what im going through. Since diagnosing pd is difficult, could anything be changed if you found out early about pd? Are there ways to prevent it?
Hi James, welcome to the channel, thanks for saying hello. It is always better, I feel, to find out earlier about any chronic illness, but in my case, earlier might not have been better. As for as I know, there are no ways to prevent or cure Parkinson's, only symptom management,
The anxiety decreasing across the day may have been the result of a dopamine increase as you were working at something you really enjoyed. Sounds simple, but dopamine can work this way.
Anxiety seems to be a huge factor in almost all PD cases. We know how damaging adrenaline and corsisol are on the body. I wonder if anxiety actually can be the cause of PD?
Hey David 😄 I too had the overwhelming fatigue that I couldn't even do a quick run to the store. Same with anxiety In fact I still have issues, I had to recently add another SSRI yay for me 🙃😏 but as the years went forward other symptoms would creep in but for me it was stiffness and slowness.. Parkinson's in general has specific symptoms but we all carry it so differently
Hey Tory. Yeah I've had the anxiety and fatigue so bad also that I haven't been able to leave the house it's amazing how these symptoms just latch on to you and never give up.
Thank you for this very helpful and insightful video, David. My first symptom was a loss of smell, which definitely impacted me when doing my job as a school cook. It was another 15 years before I received my diagnosis but I realize now that there was a steady progression of symptoms appearing in my day to day life. I felt clumsy and uncoordinated, especially on my left side, and I lost my previous ability to deal well with stress. It was when I began to move so stiffly and slowly, and lose my balance, that I realized that something was definitely wrong with me. In researching Parkinson's, the thing that surprised me the most was the incredibly diverse number of symptoms that this disease causes, and how no 2 people will have exactly the same symptoms or progress at the same rate. In a recent exchange, I had informed you that my aunt had just undergone DBS surgery and I wanted to share her good news with you. Her surgery was on January 17, she spent only 1 night in the hospital. Eight days later she returned to her doctor's office to have the stimulator and wiring installed. On February 8 they activated the stimulator and, just 8 days later, she had been able to cut back "dramatically" on her meds. She says that her gait is more normal and more stable and, best of all, she has no more tremors and her dyskinesia is almost gone too. I know that you are awaiting DBS surgery now and it looks to be a totally life-changing procedure!!
Hi Jeannie and thank you for your awesome reply. You are right when you say no to people are the same but there seems to be a mile long list of possible symptoms for Parkinson's which I'm sure makes it virtually impossible to diagnose and pick up early on in the development. It's really a weird feeling when we aren't able to deal with stressful situations I remember being at work and going downstairs and crying or going into the work van and crying because the phone calls wouldn't stop and the stress was just overwhelming me the strange thing is it's almost like an out-of-body experience where you watch yourself going through the situations and you know what to do and they aren't as bad as you think they are but you still can't deal with it. It's an extremely debilitating situation. Thank you for the updates on your end and please continue to send them I am not really looking forward to having my head worked on but everybody else seems to go through it and they're okay so I'll do it as well. It would be so nice to reduce medication again and just be myself for a little while so thank you for that. It's nice to get good news.
Beginning to think that people with Parkinson’s are left way too long demonstrating all the symptoms but everyone wants to say it something else. I have yet to be diagnosed have tremors for over 4 years had major vertebrae surgery fusion. Picked up in addition this last year the shoulders one high one low. It called Scoliosis. All these symptoms have diagnosis of there own. Had nerve damage from that vertebrae surgery four years ago they label my gait problem numbness in both legs a gait problem. Vivid acting out dreams, chronic constipation. Can’t sleep until 3:30 am every morning wake up around 5:306:00am. Take pain pills for degenerative arthritis. So everything is classified as degenerative arthritis. I will see a neurologist in November 2023 a different diagnosis doesn’t seem to be any urgency for anyone in my life. Kinda guess until you’re falling down it’s not any priority. Thank you for your continued Sharing. I know what I have because I live with it and watch the slow progression. Until it’s blatantly staring everyone in the face they all just poo poo my symptoms.
Hi Myles unfortunately I have heard stories similar to yours on a number of occasions people have had unnecessary surgeries and other treatments just because the doctors weren't aware of Parkinson's and they had seen a different specialist before getting their diagnosis from a neurologist I hope you are able to get the correct diagnosis and get the help that you need I am very sorry you have to go through this. I appreciate you taking the time to share your story and would be happy to hear the outcome when you get there
I had my first symptom 10 years ago. Hindsight is great, isn't it. (David, it's me Ann Sheehan----I had to get a new laptop and a new youtube account. What did I miss?)
Hi Ann, hindsight is always the best, sometimes it isn't lol. I don't think you missed anything. We are going to have a live stream this Saturday, Feb 25, at 430pm PST to talk about our new website and what's on there, and of course hang out together and talk about our favorite things lol. I'll give you a head start 😁 www.lifewithparkinsons.ca
KOOL NICE VIDEO - PRAY A LOT DOES HELP = NEXT TIME WILL TALK A LOT MORE - MY GOO FRIEND USED TO HAVE A BACK TO THE FUTURE CAR AND I RODE IN IT - BARRY MEANT GOOD FRIEND
I remember in my early 30's (maybe late 20's), I went to the doctor's a few times complaining about extreme fatigue. They could never figure it out so I stopped going to the doctor about it cause it started to make me feel like I was crazy or something. Now I'm definitely thinking it was the early stages of my PD. Good breakdown of symptoms.
Hi Michele, sounds like it was the fatigue. At least you went to the doctor, I totally ignored it like a typical guy, "I'm finnnnneeeee"
In my 20s, I went back and forth to the doctor with extreme fatigue and other symptoms and after a lot of testing I was diagnosed with chronic fatigue syndrome. I've since wondered if that wasn't an early symptom of Parkinson's. I've asked my neurologist but she doesn't think so but I'm not so sure myself.
@@TheOWL21 Sounds like it's possible, or just not enough coffee???
@@LifewithParkinsons lol most likely!
@@TheOWL21 I would probably wonder the same thing.
The crazy anxiety is part of PD? That right now is my biggest issue. Mine starts about 3AM and lasts about 12 hours. I'm fearing the worse about everything and then sometime in the afternoon. everything is all good. I'm so glad to know I'm not alone.
Hi Yartp. Yes, anxiety is, and has always been, the biggest symptom for me, but there is decent medication for it, and other things help as well. No, you are not alone, let's take this journey together.😀😁😊
Hi Dave, how are you? My name is Joey. I was just recently diagnosed with early-onset Parkinson's in January of 2024. I can relate to one of your symptoms. Fine motor skills. Losing fine motor skills in the left hand. Yeah, shame on this left hand, eh? thank you so much for your story. God bless you.
Hi Joey, I am doing well. Thanks for your comment. Checked out your channel. If you keep posting let me know, I will follow and perhaps we can collab on something.😀😁😊
@LifewithParkinsons Hello Dave, how are you? Oh, that would be fantastic. I would really love that. Sure, I will keep posting and hopefully we can do something together very soon. I will be looking forward to that. Thank you so much. Let's keep in touch. God bless you. I will keep you in my prayers.
@@MyJourneyWithParkinsons Sounds good
The first symptom I noticed was 4 years ago when i had trouble holding a guitar properly as my left wrist was stiff, soon after I started having trouble typing with my left hand. This stiffness spread to the rest of the arm so eventually i had a nerve conduction study done but my nerves were fine. By then I'd been having trouble with my gait. It felt like my left arm not swinging naturally messed up my walking, plus i started to have trouble keeping up with other people. Id been racing motocross and every year since 2019 I'd been getting slower to the point where i was getting lapped by guys i used to be competitive with. Finally i saw a neurologist and was diagnosed in September 2023. Until then I'd thought of the possibility of something being really wrong but since i haven't had a resting tremor i didn't think Parkinson's. But thats what it is. Medication has helped so it feels more inconvenient than debilitating at this point. I'm still riding my dirt bike, just not racing. And I don't work any overtime at work. Given some of the things i was worrying about, like als, the Parkinson's diagnosis was almost a relief though I know there are some challenges ahead - but that's true for everyone ar some level. Thanks for sharing your story!
Hi Mark, thank you for sharing a part of your story. It is good that you were able to get the help that you need. Yes, PD is progressive, and the speed of that progression appears to be different for all. Let's all stay in the game for as long as possible!😊😁😀
Did you have any of the classic prodromal symptoms years before your diagnosis? Insomnia, anxiety, RBD?
Looking back, fatigue was my symptom! I never thought about that!
Hi Angela yes it's interesting when we look back on things. 😃
Thanks David. I know this video is a year or so old, but i was relieved to come across it. I have most symptoms you describe. From sense of smell issues to anxiety and clumsiness, andd the fatigue is overwhelming. My fine motor is dulled, especially on the left, and handwriting has become terrible. i have mental slowness as well as physical slowness, and as a farm worker, it does make things difficult. y dr diagnosed fibromyalgia (which i reject) because of the terrible bouts of pain, which i know is from stiff muscles. Unfortunately, now, any dr attributes averything to fibro instead of looking for the real reason. I dont know if i have parkinson's or not, but the years long list of issues is driving me crazy. Thankuou for your very hlpful video
Hi Jinja, thank you for your comment, but am very sorry that you may be misdiagnosed. I know it has happened to many people who have left comments, and it is terrible. I really hope you are able to see a different doctor and get the help that you need. Perhaps there is someone that can go with you to see your doctor and push for a re-evaluation? Parkinson's is so difficult to diagnose and recognize for some. Please let me know how it turns out for you.😊😁😀
Hello from Toronto.
Thanks for your story, and your channel. I have PD in my family. This talk helps. Good luck.
Hi Richard, good to hear from you. Best wishes for your family member with PD. Feel free to check out my website also.😊😁😃
www.lifewithparkinsons.ca/
It's helpful to hear about other PWP experiences because it reminds us we're not alone. Very relatable. Thank you for sharing. Love the backgrounds, too!
Thanks Charlotte, glad you enjoyed it. Finally got the green screen mounted properly. Fussy little things they are, need to be set just right.
Diazepam, is an excellent muscle relaxant . I’m not taking any PD meds. Was diagnosed Nov 2017. My neurologist is aware of my prescribed meds . They help , or so I thought until “ I fell flat on my nose” . On 18 th December . Thank you for sharing.
Hi Jane. Sorry you had a fall. I am glad you are here looking for answers and possibly a little bit of help you are most welcome. 😀😁😊
Magnesium is a natural Diazepam
Thanks for sharing, David. Your videos are very helpful, insightful, and relatable. During my long wait for my first appointment with the movement disorder specialist (scheduled for end of July 2023) I have considered logging my symptoms. Your request to viewers to share their pre-diagnosis symptoms has catalysed this process… so here goes! Looking back on things my first symptom, which came on in about mid-2019 was a stiffness in my left hand which made typing problematic - I put it down to repetitive strain injury. I first noticed uncontrollable tremors on 3 January 2021 - I put it down to the cold UK winter. Shortly afterwards, I began to develop a quiet, monotone, hoarse and slurred voice with occasional stammering - I then suspected something neurological. In no particular order, I also experience following symptoms: slowness and stiffness of movement; awkward and poorly coordinated gait, especially first thing in the morning; decreased flexibility; problems with fine motor coordination on my left side (fortunately I’m right-handed); stinging eyes; difficulty swallowing and frequent choking on food; blocked sinuses; mucus build-up and drooling; persistent throat clearing; masked facial expression which makes me look like I am angry or vacant even when happy and engaged; facial skin tightness - feels like my face is splattered with bubble-gum; anxiety; and increasingly illegible handwriting - although my handwriting was never great to be fair.
Common PD symptoms that I have not yet experienced include: insomnia; extreme fatigue; freezing; poor balance; loss of sense of smell - if anything I’ve experienced a heightened sensitivity to odours such as strong perfumes; gastrointestinal disturbances; and loss of cognitive function. I do, however, find that the extended gap between the thoughts and the words coming out of my mouth means that I sometimes lose my train of thought. More commonly, I get left behind in conversations because of my problems vocalising!!
Hi John, thank you for sharing such a complete list of what you are going through, it will definitely help with your diagnosis. I'm sure getting Parkinson's isn't on your list of fun things to do, but we are glad you made it here. I definitely understand getting left behind in conversations, it happens to me as well. I thought you would like this video if you hadn't seen it yet, th-cam.com/video/5xhQXhVzyyY/w-d-xo.html How to make the most of your neurology appt. Thanks for saying hello, and welcome here!
@@LifewithParkinsons . Thanks for the warm welcome and all the work you are doing. Great tips in the How to make the most of your neurology appt. . I will get to work on those lists!!
@@jmauremootoo best wishes John let me know how your neurology appointment goes
@@LifewithParkinsons Will do. Thanks for caring and sharing
Clever piece David and very entertaining.
For someone like me who is not familiar with the disorder, it provides great insight.
Thanks Richard. Glad you enjoyed it, spreading awareness is important
Wow you explained things I never would have even thought were related . Always been slower than others but i made up by being thorough in comparison of speed . One boss use to say I had 2 speeds , slow and stop . Lmgo . But he said he knew he would never have a call back , never by me . I use to have a lot of anxiety starting the day. Just figured it was because of the job and my professional abilities .
Overtime , I loved it .
I am on week 3 of med ( carbadopalevadopa ) , seems like tremors/ shakes has settled off , haven't noticed last 4 days . Great video and wishing you better days brother
Hi Jerry, glad to hear the meds are helping, what a relief. Interesting how you had a similar experience of anxiety. Sounds like you had a good boss. Wishing you better days as well. 😀😀😊
@@LifewithParkinsons yeah that boss reminded me of Mr Hayney from Green Acers. He had the gift with words . Died In 2020 at 45 , diabetes . Lost 2 different previous bosses that month and buried 2 other coworkers the month before on my birthday . Crazy , not 1 but 2 funerals on my birthday . Yeah it's all I know is work , was a workaholic , and loved the OT and DT
Wow that is a tough birthday
Trouble keeping up at work was totally one of my first symptoms. 😴
Thanks Jeremy, yes that is an eye opening moment, especially when you are trying to figure out what is wrong😊😁😀
Thank you ! This video was so helpful.
Hi Margie so glad it was helpful thank you for letting me know. 😀❤️👍
Thank you for sharing your story. I've had troubles with my eyes for around 3 years now and have tried finding out why (I have a video of how I perceive text), I've been to 3 eye doctors and one of them suspected it might be neurological so I've tried to get to see a neurologist but the healthcare system just keeps brushing me off. They always tell me I'm to young to have a neurological disease but as we all know anyone can get it. However as of late I've noticed I've begun struggling with visual interpretation / decoding. Like I can see but I have no idea what I'm looking at for like 3-5 sec I also have a very bad sense of smell, tend to misspell things (which I never did before) and I've got muscle facilations (mostly in my thigh and right thumb). Also I don't know if it's normal but when I'm drifting of to sleep and accidentally think of something scarry, like imaging something jumping towards me I physically react; I get adrenaline and jump back. Also anxiety but I've had that since I was like 15, I'm 27 now.
Hi, thank you for saying hello and sharing part of your story. I hope these videos are helpful 😃😊😀
I went through everthing you experience but i also lost my ability to smell
Hi Pat, I lost that eventually too, but it's amazing sometimes how our stories can be so similar. I don''t know about you, but I feel less alone and isolated when someone else understands. Thanks for your comment.😀😁😊
Hi dave new subscriber here. Almost everything you mentioned is what im going through. Since diagnosing pd is difficult, could anything be changed if you found out early about pd? Are there ways to prevent it?
Hi James, welcome to the channel, thanks for saying hello. It is always better, I feel, to find out earlier about any chronic illness, but in my case, earlier might not have been better. As for as I know, there are no ways to prevent or cure Parkinson's, only symptom management,
The anxiety decreasing across the day may have been the result of a dopamine increase as you were working at something you really enjoyed. Sounds simple, but dopamine can work this way.
Thanks for the tip!😀😁😊
Thank you, for these videos. I'm new and navigating this myself and this is so selfless.
@@inTunePathways You are most welcome
Could you have done anything about it?
I don't think so Elena, not without more information.😊😁😃
Anxiety seems to be a huge factor in almost all PD cases. We know how damaging adrenaline and corsisol are on the body. I wonder if anxiety actually can be the cause of PD?
They don't know the cause of Parkinson's disease yet so it is possible 😃😄😊
Hey David 😄 I too had the overwhelming fatigue that I couldn't even do a quick run to the store. Same with anxiety
In fact I still have issues, I had to recently add another SSRI yay for me 🙃😏 but as the years went forward other symptoms would creep in but for me it was stiffness and slowness.. Parkinson's in general has specific symptoms but we all carry it so differently
Hey Tory. Yeah I've had the anxiety and fatigue so bad also that I haven't been able to leave the house it's amazing how these symptoms just latch on to you and never give up.
@@LifewithParkinsons Yep 👍 I agree. But we gotta keep on swimming 🐟🐠🙂 just do one day at a time 😉
@@toryberch exactly 😀
Thank you for this very helpful and insightful video, David. My first symptom was a loss of smell, which definitely impacted me when doing my job as a school cook. It was another 15 years before I received my diagnosis but I realize now that there was a steady progression of symptoms appearing in my day to day life. I felt clumsy and uncoordinated, especially on my left side, and I lost my previous ability to deal well with stress. It was when I began to move so stiffly and slowly, and lose my balance, that I realized that something was definitely wrong with me. In researching Parkinson's, the thing that surprised me the most was the incredibly diverse number of symptoms that this disease causes, and how no 2 people will have exactly the same symptoms or progress at the same rate.
In a recent exchange, I had informed you that my aunt had just undergone DBS surgery and I wanted to share her good news with you. Her surgery was on January 17, she spent only 1 night in the hospital. Eight days later she returned to her doctor's office to have the stimulator and wiring installed. On February 8 they activated the stimulator and, just 8 days later, she had been able to cut back "dramatically" on her meds. She says that her gait is more normal and more stable and, best of all, she has no more tremors and her dyskinesia is almost gone too. I know that you are awaiting DBS surgery now and it looks to be a totally life-changing procedure!!
Hi Jeannie and thank you for your awesome reply. You are right when you say no to people are the same but there seems to be a mile long list of possible symptoms for Parkinson's which I'm sure makes it virtually impossible to diagnose and pick up early on in the development. It's really a weird feeling when we aren't able to deal with stressful situations I remember being at work and going downstairs and crying or going into the work van and crying because the phone calls wouldn't stop and the stress was just overwhelming me the strange thing is it's almost like an out-of-body experience where you watch yourself going through the situations and you know what to do and they aren't as bad as you think they are but you still can't deal with it. It's an extremely debilitating situation.
Thank you for the updates on your end and please continue to send them I am not really looking forward to having my head worked on but everybody else seems to go through it and they're okay so I'll do it as well. It would be so nice to reduce medication again and just be myself for a little while so thank you for that. It's nice to get good news.
Beginning to think that people with Parkinson’s are left way too long demonstrating all the symptoms but everyone wants to say it something else. I have yet to be diagnosed have tremors for over 4 years had major vertebrae surgery fusion. Picked up in addition this last year the shoulders one high one low. It called Scoliosis. All these symptoms have diagnosis of there own. Had nerve damage from that vertebrae surgery four years ago they label my gait problem numbness in both legs a gait problem. Vivid acting out dreams, chronic constipation. Can’t sleep until 3:30 am every morning wake up around 5:30 6:00am. Take pain pills for degenerative arthritis. So everything is classified as degenerative arthritis. I will see a neurologist in November 2023 a different diagnosis doesn’t seem to be any urgency for anyone in my life. Kinda guess until you’re falling down it’s not any priority. Thank you for your continued Sharing. I know what I have because I live with it and watch the slow progression. Until it’s blatantly staring everyone in the face they all just poo poo my symptoms.
Hi Myles unfortunately I have heard stories similar to yours on a number of occasions people have had unnecessary surgeries and other treatments just because the doctors weren't aware of Parkinson's and they had seen a different specialist before getting their diagnosis from a neurologist I hope you are able to get the correct diagnosis and get the help that you need I am very sorry you have to go through this. I appreciate you taking the time to share your story and would be happy to hear the outcome when you get there
Do you get quickly nervous before having parkinson??
Yes I would get nervous very quickly and have terrible anxiety before my diagnosis. Hope you are well.
Sounds like my life
Sorry to hear that George but it sounds like you are in the right place then 👍
I had my first symptom 10 years ago. Hindsight is great, isn't it.
(David, it's me Ann Sheehan----I had to get a new laptop and a new youtube account. What did I miss?)
Hi Ann, hindsight is always the best, sometimes it isn't lol.
I don't think you missed anything. We are going to have a live stream this Saturday, Feb 25, at 430pm PST to talk about our new website and what's on there, and of course hang out together and talk about our favorite things lol. I'll give you a head start 😁
www.lifewithparkinsons.ca
@@LifewithParkinsons What a neat website! I'll have to go shopping.
@@ASHEEHAN Was hoping you would like it
KOOL NICE VIDEO - PRAY A LOT DOES HELP = NEXT TIME WILL TALK A LOT MORE - MY GOO FRIEND USED TO HAVE A BACK TO THE FUTURE CAR AND I RODE IN IT - BARRY
MEANT GOOD FRIEND
Thanks Barry that is so awesome that you got to ride in a DeLorean.
There is actually is a skin test now called Syn-One that is 95 percent accurate
I did not know about that that's really exciting 😀😊😃
@LifewithParkinsons it really is exciting. I'm going to have the test soon
@@863NightOwl Please let me know how it goes. Interested in your results.
@LifewithParkinsons I will Thank you..
😊
Thanks