I apologize if I didn’t introduce myself days ago. I thought I did or I had planned to, but I don’t see it on the site. I have been playing with my new Meta VR headset so I have been distracted.
By the way I recommend it great exercise.
I was diagnosed in 2011 at age 40. I fell and went to my general doctor thinking that I did something other than breaking my foot when I fell. I noticed that my toes were curling in on that foot and I was dragging it. My friend also noticed that my pinky finger was shaking.
Well I was shocked when he said that I had Parkinson’s. The only thing that I knew about the disease was that Michael J Fox had it.
I have spent the last 12 years learning about the disease. Of course, I was in denial for the first few years until my symptoms progressively got worse.
Since then, I have published a book called Living with Parkinson’s Depression and Childhood Trauma. I had a stroke on June 30, 2022. The stroke has impacted my memory hence why I couldn’t remember if I introduced myself.
Anyway, I am looking forward to reading everyone’s posts and responses.
Hello Dawn welcome! I’m so happy that you’re enjoying the VR! That’s impressive that you’ve published a book! I’m glad that you’re here, thank you for participating in the soft launch.
Hi Dawn. My age is showing. I have no idea what a Meta VR headset does but I’m sure it’s super cool. Maybe the new tech will bring us the breakthrough we need in PD!
The Meta headset is a virtual reality gaming exercise unit. Many people are purchasing it to purchase the exercise app called Supernatural. It has a non contact boxing game that many of us with Parkinson’s like. Rock Steady Boxing is around $80 a month and many of us on disability can’t afford the $80 monthly price. There is also many exercise applications you can download for it. It is really fun, especially if you are not fond of exercise you will change your mind.
hi Dawn! It must’ve been quite a shock to find out like you did.
I am very interested to hear more about your book. It’s something I probably should read. I had a lot of childhood trauma.
……then to have a stroke. Oh my, how did you handle this all? Your recovery must’ve been a tough one with all the rehab that you have to do.
My daughter works with stroke patients. She is a medical speech pathologist with a swallowing disorder specialty. She works in the ICU with strong patience, at a level one trauma center. She is also certified in Parkinson’s.
Hello, I am wishing that I wrote the book after my stroke then before because I would have a lot more to add.
My biggest issue with my stroke was that no one believed me except for my best friend. She flew from LA to MO because she knew something was off. She fought for me. Everyone including my doctors and ER insisted that it was Parkinson symptoms. To the point that I was sent to psych ward for evaluation. After I got out, my family then insisted that my Neurologist run a MRI which confirmed that I had a stroke. You can imagine how apologetic he was. But I didn’t get the treatment for the stroke during the window of time I should have so damage was done. Luckily if you call it lucky my stroke didn’t affect my ability to walk which is one reason I think they didn’t believe it was a stroke. Mine affected speech, memory and cognition. I eventually remembered my name and my family members names. I still have issues recalling things but I recovered around 90%. Although the Parkinson has gotten worse. I take double of the medication I did prior to the stroke. Makes me wonder if the stroke is speeding things up. I have spent nearly a year in rehab outpatient because I insisted.
So a stroke is now something else we have to worry about. Were you young when you had your stroke weren’t you? Are strokes more common?
The reason I am concerned now is I already go to a “cardiac failure cardiologist” and a pulmonologist because they have been very concerned about my heart and particularly my lungs. My lungs are very reactive particularly to anesthetic. My last three times I’ve had to go in and have anesthetic. They have warned me that I may wake up in the intensive care on a ventilator —. yikes.
That is scary, I can understand your concern. To your question about strokes. If you type Do Parkinson’s patients have an increased risk of strokes in Google you will find several articles on it. But I know several people with Parkinson’s that have had at least one. I had one last year at 51. I will keep you in my prayers. You are correct Parkinson’s isn’t for weak.
Hi Dawn. I’m happy you’re here! when I actually text on my phone and not use voice to text, it’s crazy how my thumb will just all of a sudden go nuts up and down and I can’t stop it. The sensation is so strange! Tell me more about this VR?
The virtual reality headset that I have is the Meta Quest 2. I purchased it off Amazon. I subscribed to an exercise app called Supernatural. You would download the app from the App Store in your phone. If you purchase the headset I can send you a guest pass. You would get 30 days free if someone like Mike or send you the guess pass otherwise you only get one week free. After it expires it is $18 a month. Here is the website if you want to see what it does https://www.getsupernatural.com
when I actually text on my phone and not use voice to text, it’s crazy how my thumb will just all of a sudden go nuts up and down and I can’t stop it. The sensation is so strange! Tell me more about this VR?