Kuhan as always I so relate to your story a really heartfelt video and good to hear about the positive aspects of being part of the club you never really wanted to join. Every point hits home especially the 'how long' questions and the process of diagnosis. It's a pleasure to know you. Carpe diem.
Great job on the video. I'm glad to hear that you're still in a good place at the 10 year mark. It took me two years to figure it out. I figured it out when I decided to search Parkinson's online....read the diagnosis and knew I had it. It was frustrating to think of all the doctors that didn't take the time to really look at my symptoms (gait change, no arm swing, occasional tremor, slowness). So, I also understand how much of a relief it was to get the diagnosis.
Kuhan - I am so moved, touched and inspired by this amazing video sharing your experience in such a generous and vulnerable way. Thank you my dear friend for making the difference to me throughout the time we have known each other. ❤️❤️❤️
Love this video. So we'll spoken and we'll put together. Story so familiar to me! I've become Dr Goggle as well! Would love to meet you. And do a video about my diagnosis.
I watched this video after seeing you on the Parkinson's all volunteer call and have found it very moving, my husband had Parkinson's and I know what it was like when he got his diagnosis and how right you were to say live every day as a new day I hope it is all right but I am going to share you information and you tube details with our local group so they can see it .Keep well and keep up the fight against Parkinson's I will also try to see how I can find your pod casts Two Parkies in a Pod.
I too was relieved when the 3-point skin test said I had Parkinson's. I noticed a lack of smell in or about 2013 but it wasn't until October 2023 that I was diagnosed. Finally I could leave that phase behind me and focus on the future. Now in December of 2024 I'm beginning to have brief periods of right hand tremor. They start and finish in less than ten seconds but it is quite clear these were Parkinson's tremor. So far these right hand tremors occur perhaps once per week. I just added "Masked Face" as the 21st item in the list of symptoms I track. I haven't had masked face yet; this is just making a place for it should it happen.
Thank you for your story. I am in the early days of trying to get diagnosed. I was initially seen by a neuro for severe daily headaches that they think is from a leak in my spine. However, I was/am having lots of other symptoms that they now think is PD or PD-plus. I am curious to see if you had or have any of these issues. Right arm doesn't swing, I scream and move in my sleep, sleep apnea, I don't blink very much anymore, extreme stiffness in my facial, neck and back muscles, I shuffle when I walk from stiffness, I have cogwheel rigidity in my right wrist, light sensitivity and migraines, sweat like crazy at weird times, bed wetting, trouble reading and a resting tremor in my right two fingers as well as an internal tremor, massive fatigue and sleepiness in the day, depression and anxiety. I am scheduled to see a MDS in June but just trying to get a perspective of how others journey started and their symptoms.
I think people with young onser Parkinson's have a much better prognosis. That's probably why ten years on you haven't regressed too much. I'm 67 and the deterioration has been swift.
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“Little ‘ol’ Parkinson’s”. That made me smile. Thanks for this video, it is very helpful and encouraging to hear. Good luck.
Brilliant video. Best ive seen for years. Wish you all the best
Kuhan as always I so relate to your story a really heartfelt video and good to hear about the positive aspects of being part of the club you never really wanted to join. Every point hits home especially the 'how long' questions and the process of diagnosis. It's a pleasure to know you. Carpe diem.
Thank you for you encouraging video. I was diagnosed one year ago and still struggle with coming to terms with it. Your story brings comfort and hope.
Great job on the video. I'm glad to hear that you're still in a good place at the 10 year mark. It took me two years to figure it out. I figured it out when I decided to search Parkinson's online....read the diagnosis and knew I had it. It was frustrating to think of all the doctors that didn't take the time to really look at my symptoms (gait change, no arm swing, occasional tremor, slowness). So, I also understand how much of a relief it was to get the diagnosis.
Thanks so much for sharing your story. It’s very encouraging! ❤
Kuhan, a great series of 3 videos, well done and thank you
Kuhan - I am so moved, touched and inspired by this amazing video sharing your experience in such a generous and vulnerable way. Thank you my dear friend for making the difference to me throughout the time we have known each other. ❤️❤️❤️
So relatable. Thank you for sharing
Thank you.❤
An amazing video! very touching.
Love this video. So we'll spoken and we'll put together. Story so familiar to me! I've become Dr Goggle as well! Would love to meet you. And do a video about my diagnosis.
I watched this video after seeing you on the Parkinson's all volunteer call and have found it very moving, my husband had Parkinson's and I know what it was like when he got his diagnosis and how right you were to say live every day as a new day I hope it is all right but I am going to share you information and you tube details with our local group so they can see it .Keep well and keep up the fight against Parkinson's I will also try to see how I can find your pod casts Two Parkies in a Pod.
I too was relieved when the 3-point skin test said I had Parkinson's. I noticed a lack of smell in or about 2013 but it wasn't until October 2023 that I was diagnosed. Finally I could leave that phase behind me and focus on the future. Now in December of 2024 I'm beginning to have brief periods of right hand tremor. They start and finish in less than ten seconds but it is quite clear these were Parkinson's tremor. So far these right hand tremors occur perhaps once per week.
I just added "Masked Face" as the 21st item in the list of symptoms I track. I haven't had masked face yet; this is just making a place for it should it happen.
Thank you for your story. I am in the early days of trying to get diagnosed. I was initially seen by a neuro for severe daily headaches that they think is from a leak in my spine. However, I was/am having lots of other symptoms that they now think is PD or PD-plus. I am curious to see if you had or have any of these issues. Right arm doesn't swing, I scream and move in my sleep, sleep apnea, I don't blink very much anymore, extreme stiffness in my facial, neck and back muscles, I shuffle when I walk from stiffness, I have cogwheel rigidity in my right wrist, light sensitivity and migraines, sweat like crazy at weird times, bed wetting, trouble reading and a resting tremor in my right two fingers as well as an internal tremor, massive fatigue and sleepiness in the day, depression and anxiety. I am scheduled to see a MDS in June but just trying to get a perspective of how others journey started and their symptoms.
Any updates?
Hey there would you like to be a part of my video for world parkinsons day? would love you to be - great video man
Where about
So sorry my brother.🙏🏼🙏🏼
Not getting anywhere with nhs, sounds very familiar!!!!
I think people with young onser Parkinson's have a much better prognosis. That's probably why ten years on you haven't regressed too much. I'm 67 and the deterioration has been swift.