April is Parkinson's Awareness Month and there’s no better time to tell my story - “More Than a Tremor” Part 1 charts the year long story of my (mis)diagnosis.
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.
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.
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. ❤️❤️❤️
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 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.
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.
