Parkinson's, DBS and Me - Episode 8: Decision Day
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- Опубликовано: 19 сен 2022
- In episode 8, Jo awaits the decision from the multi-disciplinary team meeting, where health care professionals discuss individual patient cases. After a long period of uncertainty, Jo hopes she will finally know if she’s suitable for deep brain stimulation surgery.
We’re taking a short break in our DBS and Me series while we put together the next few episodes. Find out more about the series www.parkinsons.org.uk/informa...
Hello Jo, My name is Penny and I was also diagnosed with Parkinson’s at 47yrs old, I am now coming up 58 and after a long year I am actually my having DBS next Wednesday Nov 9th at the wonderful John Radcliffe in Oxford. When I just watched all yr little episodes just tonight I just felt compelled to write and say that me and my Parkinson’s symptoms are almost a mirror image of yours, the main difference being I don’t have hallucinations or balance issues, I also don’t have the tremor or pain on my right side as yet, my problem is my left side all the way down from my face however all the thoughts you had whilst accepting the diagnosis are identical to mine. DBS was suggested to me several years ago but I decided I could not have it done awake, then I was informed that I could now have it done asleep, this changed my way of thinking approx 2 years ago to where I am now.. just 6 short days away. To say this has been a devastating,challenging, painful ,frustrating, and anxious 10 year journey, is an understatement to say the least but although it’s not a cure I have one chance of a period where I am not shaking and not in so much pain. I would love to hear your update on the final test regarding genes, I have my fingers and toes crossed that you will be blessed with the same chance as I’m getting. I am so grateful to be given this chance, my main prayer is that there’s a cure over the next few years for this deliberating horrid disease.. much love to you brave Jo, kindest regards.. penny Burnell. Xx 🙏🏼🙏🏼
Oh dear Jo! Another obstacle to overcome…how frustrating. Like Colin asks, why is this particular screening only being requested now? If it is significant enough a factor to hold up the process, and is being asked simply because of your age at diagnosis, then why was this not assessed sooner? I think Jo you put it more diplomatically than this in the video, but the point is… PD is a hard enough journey for many reasons but largely because it is absolutely strewn with unknowns and moving goalposts. If those that treat us can bear this in mind and design treatment protocols which add as few additional surprises as possible, this would make an immense difference and would be greatly appreciated. Thank you again Jo for having the courage and generosity to allow us to share in your journey
Hang In there Jo. Myself ... 1st symptoms 08 @ 48yrs old, dx 09, meds 11, working and commuting 120km/day until September of 19 (ha, 3yrs ago today), dbs April this year, still getting adjustments but some fantastic improvements in arm, leg stiffness, voice, smell, etc.
Only remaining issue is balance. Using a walker, had a bad fall and will get walking again soon. For now only walk very slow or fast and deliberate without walker.
May you have a successful surgery very soon!!
Hi so glad I’ve seen this series. I’m going for my first consultation m today and I am so nervous. Trying to not get my hopes up but I really hope I am suitable. I’ve got doubts though. Thanks for sharing.
Hi Michelle, really great to hear you feel the series has helped you. Best of luck with the consultation today, fingers crossed for you. All the best, James
I have liked this little series but am I alone in being disappointed that the doctors hadn't already done the genetic screening long before this point.
Me too. Fingers crossed for you Jo x
promosm 🌸
Delibitating .. oops.