Parkinson's, DBS and Me - Episode 12: New Beginnings
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- Опубліковано 28 вер 2024
- In the final episode of DBS and Me, Jo reflects on life after deep brain stimulation. Just 10 weeks after her surgery, she can go out for dinner, put eyeliner on, and even forget she has Parkinson’s for a moment. Jo has her life back.
Thank you to the Newcastle Upon Tyne Hospitals NHS Foundation Trust and South Tees Hospitals NHS Foundation Trust for supporting our DBS and Me series. Also thanks to David Sangster for original music and the volunteers who helped with the series.
You can continue to follow Jo’s Parkinson’s journey on Instagram at @ladyduffgordon
Learn more about DBS on our website: parkinsons.org.uk/information-and-support/deep-brain-stimulation
And share Jo’s story using the hashtag #DBSandMe
I had DBS surgery a year ago and it changed my life. I am so glad that you had improvement.
Thank you Jo for sharing your story - I have my annual meeting with my Parkinson's nurse tomorrow & your series has helped to inform me about DBS in a very positive way. I was diagnosed 5 years ago & at that very first meeting the consultant told me 'then there is always DBS' & that together with instructions to contact DVLA etc scared me silly. The unknown can be terrifying but your generosity in sharing your journey has been really helpful. I hope your tweaks continue to improve your life xx
Thank you - my wife , who had encephalitis 25 years ago - is having the same op. Your films have really helped..
There' s a list of heroes somewhere and you are on it. Ive just been diagnosed with it and you are my inspiration. From the bottom of my heart - thank you. I'm from Australia.
Hang in there, Clive! There are so many clinical trials going on right now than there was when I was 1st diagnosed, which was 11 years ago.
You are literally in the midst of all the
New things happening ✨️ right now. The future does not look so bleak anymore.
@@aloul441 HģVhhj
Clive I don’t know you but I wish you all the best. Fingers crossed you can have the DBS procedure and you get the outcomes you wish for.
Thank you for having the courage to share your DBS experience, I’m 3 years in to my Parkinsons journey and its brilliant to know that there are things that work to make life a bit better. Take care and I hope you continue to feel the benefits of DBS.
Thank you Jo, for sharing your DBS journey, you're an inspiring lady 🙂
How you discribe your state of consciousness with the disease is so compelling. My hubby deals with it with humour be i see his agony and frustration. The dbs really has done him a world of good we are so so thankful to have him be a great candidate to receive such a lifechanging event. Im watchi g and so interested in your journey.
You are a brave woman. I wish you a long and happy life and don't look back, live your life the best you can.
Jo - so brilliant to hear the improvement. Thanks for sharing your journey - you’re such an inspiration and so humble - I can tell how you want to show your gratitude and to be real and help others! Praying for many years of unlocked quality of life for you and blessings to you and your family.
Thank you for sharing your experience with DBS as I am waiting for the date to in for operation after the successful assessments and your positive experience gives me added reassurance with benefits in many ways . I am going to re watch the videos again, as I really enjoyed it in spite of being in NHS-for 43 yrs(10.5 yrs in Hospital job and 32.5 yrs as GP)-Dr.Ambalal Patel.
Excellent Jo, very happy for you and for continued good results. My wife is a few years into PD, and I happen to work for a major DBS maker and we are looking at too.
TY Jo for helping my family understand me better! Your story has helped much more than one person!
Thanks for sharing your story. I'm am down for DBS and you have been a huge inspiration, more then you will ever know. Thanks
Respect for your role in this serie Jo, I have PD for 9 years, over 6 weeks the DBS screening and I hope green light for the DBS
W.O.W. I am scheduled to have DBS surgery in 14 days. I have been watching your series. I wept with joy for you, and hopefully for myself and others who can follow in your tracks.. Thank You!!
Thank you for sharing, I am at the beginning of the same journey, my consultant believes I am a suitable candidate for DBS, your videos have answered many of my questions, and are inspiring too. Like you, I feel we are very fortunate to have the NHS in our times of need. All the very best to you.
A amazing set of films I was diagnosed around same age as you x
My dad is having DBS in a few days time. Thanks for this series!
God bless him..
Happy for you. Glad you're feeling better..
Thanks you so much Jo for sharing your journey. It has given me new hope!
Amazing! Thank you for sharing. You inspired me to proceed with my DBS scheduled next week, May 3, 2024. I'm from Cebu City, Philippines. God bless everyone.
Best of luck with your DBS Danilo 💙
Hi. May I ask how your DBS went and how you are doing now? I am from the Philippines as well
It's been great to follow you. Thanks for sharing. DBS is fantastic!!
You are amazing ❤Thank you so much for having the courage to share with us -the information in the videos will be a huge help to anyone else considering DBS -much love xx
Wonderful series, really informative as a family member of someone going through DBS. Thank you for sharing your story and being so brave.
Really glad you love the series - thank you so much! 💙
What an amazing story. You are so brave and thank you for sharing. I am having my DBS surgery in July 2024. I am on board with it 100%. I can’t wait to have this surgery. Aloha Mike.
Best of luck Michael - we're here to support if you need it! 💙
@@parkinsonsuk thank you so much
Thanks so much for doing the videos it’s very hard to explain to anyone how you feel and you expressed it beautifully. My DBS was postponed due to not one but two falls that resulted in some major fractures. I just love the drama…not. I’m hoping to get the ball rolling again at my appointment in 10 days, hopefully I won’t trip over the bloody ball😂😂
Thanks for sharing !!!
Thank you so much. The videos have helped me be prepared for the assessments which knocked me for 6 and I would have totally underestimated them. I am awaiting a decision in early January and hope to be on the waiting list for the op next summer. How long did it take from op and then from switching on did you need support? I am on my own so need to get organised. I know everyone’s different but I think we are similar age and symptoms. Thanks a million-kate xxxx
You are amazing. Thank you for being so selfless and letting us be part of your journey with DBS. I wish with all my heart that you have a brilliant 2023….onwards and upward, you brilliant woman.
Thank you
To think governments spend billions of dollars on defense and war vehicle's, can you imagine where we might be if that money went to real research. ...
Curious how Jo is doing now a few months out? Hoping for the best of course!
Thank you! I'm doing very well!
❤
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I have Parkinson's myself. Great to hear your positive feedback.
Thank you Jo, I have just started my DBS journey (diagnosed dec 2020 after an accident / head trauma caused mine in 2014)... You are a brave inspiration to aspire by. I also look forward to having the procedure and am equally terrified as i live alone, secluded from family & most of my friends.
I wish you a fabulous life (from Australia) xox
I cried the whole time. I was diagnosed with Parkinson’s 9 y ago. I’m scheduled for DBS surgery. I’m feeling more confident. I’m from Brazil. Thank you for sharing.
Thank you for sharing your journey
That gives me hope. Thank you k
Wow!! Amazing!! Thank you for sharing! Best to you on your journey!
I wonder if you know how incredible this series has been. Firstly, congratulations on the DBS and the outcome. Secondly on how wonderfully helpful this series has already been. thank you so much. You mention hoping it’ll help us Parky people and maybe some healthcare professionals. It has the potential to help awareness in EVERYONE (I’ve been sharing it with friends and colleagues to get a bit more of an idea of my situation).
Just in case Prof Pavese reads this(😅 😉). I know that everyone’s journey is different and DBS isn’t for everyone. On the other hand, hope should be ubiquitous.
Lots of love and best wishes. Get set to compete with that battery life! Xxx Jo T
Jo,
Job done again girl..I have sent your story to my mum as I am.on the list for assessment starting in July..She says it ought to be compulsory for all. You remind me of me actually. I am an ex nurse, and was 42 at diagnosis: 15yrs ago. Wish to lived nearer. Would loved to have a cuppa and a chat. Thank you for being so giving of yourself and sharing your experiences. You HAVE made a difference! And there was you thinking that your days of nursing were over! You are instead leading the change; guiding, informing, influencing, inspiring and doing so with great humility, honesty, a great dollop of humour and your lovely smile! Power to your elbow. X Karen
,thank for one of the best stories ever.
I also had DBS and had been suffering from Parkinson’s for 20 years. After the DBS my life has changed dramatically. I no longer have a tremor and I have no painful dystopian. Also I have improved dramatically in speed and mood, all I can say is Thankyou for your story .
Very good series. I had the surgery in May of 202. After 11years with disease
Thank you so much for sharing your journey. As someone whose family member is living with Parkinson's and is in the process of being approved for DBS, your journey has been very informative. I wish you all the best things in life and hope that you are doing well.
Thanks for sharing this, it's interesting and thought provoking. I was diagnosed with PD nearly four years ago, probably symptomatic for six. Seeing this has given me hope and encouragement, for that I'm really grateful..
This was a very good series of videos and helpful to me as someone who was diagnosed with PD nearly 7 years ago and am just beginning the path towards possible DBS. I also find Jo sympathetic and admire her for permitting her experience to be filmed and for tolerating the intrusion on her privacy that entailed. However, I would personally have found it more useful if the films had contained a little less emotive content and more factual information about exactly what DBS entails, e.g. the different types of DBS were alluded to but not really explained (my own PD is tremor dominant, whereas hers is dystonia dominant, and I gather that might make a difference), and the details of how the DBS machinery is operated were not really explained. It would also have been helpful to hear more about the factors that might determine whether a patient is suitable for DBS.
Thanks for your feedback and that's completely valid. The aim of the series was to inspire and raise awareness whilst also informing people about the process. It is quite difficult to capture detail in videos without making them less engaging, although we will definitely take the feedback on board for future projects. We do have lots of written information here which will hopefully be useful to you www.parkinsons.org.uk/information-and-support/deep-brain-stimulation
Thank you for this amazing series about DBS. My mum is having the op in 2 days time and I’ve been researching DBS since we got told about it. Amazing to see the detail included in these episodes and personally it makes me feel the right choice for my mum was to have this op. Hopefully mum gains a new improved life and we can help Manage the symptoms much better with the device. Thank you once again and good luck to anyone going through the process.
Thank you for sharing ❤
I’m really grateful that you shared your story. DBS is on the table for me. I’m not ready yet but you have given me a positive example to counteract some others I’ve been told. Much joy to you, and eat some yummy rice for me 😂
DBS has been the best thing l have ever done. Comfort it asap cheers
I know somebody who is clinically diagnosed with Parkinson's in 2022. He is 80 years old. He can hardly walk. His disease progressed until he was bedridden for more than six months. Now he can get up from his bed stand up and walk very slowly towards (somebody of course is assisting him holding his arms) the living room where he can sit on his rocking chair. I did some research and found out that no drug is available yet as of December 2022. How can this be possible?
I’m due to have mine on 30th November. I’ve just come across this series. Thank you for sharing Jo. This has given me hope.