The Parkinson's Podcast: DBS, ON/OFF times, and Getting Through It with Heather Kennedy
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- čas přidán 25. 08. 2024
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This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation, please visit: dpf.org/YTpodc...
In this episode of the Parkinson's Podcast, Heather Kennedy, a person with Parkinson’s who has been living with the diagnosis for 12 years discusses:
• Three articles she’s recently written called “Gifted”, “Poison for Breakfast”, and “Sweating it Out”
• Her journey with Deep Brain Stimulation (DBS)
• The difficulty of unpredictable ON and OFF times in Parkinson’s and how those times impact relationships
• How her views have changed since the initial days of her diagnosis
• The difficulty of discerning between symptoms that are due to Parkinson’s, medications, or something else entirely
• The burden of explaining Parkinson’s to those who don’t understand
• The importance of having compassion for people with Parkinson’s and nurturing that compassion in all areas of life
Mentioned Links/Resources
Heather’s articles:
Gifted: www.worldpdcongress.org/home/2022/11/28/gifted-on-parkinsons-poison-and-perception
Poison for Breakfast and Sweating it Out: www.kathleenki...
My amazing friend. Love ya!!! Thank you Heather and Mel and all the folks at DPF.
Thanks again Heather
Something you said earlier, just made me think of people on the bus telling me "but you don't look sick, you look fine, and like your in great shape," (because of the intense muscle tone). I would explain to them that I clean up to look like I'm fine but it takes me forever to prepare to come out, and you all are seeing my best three hours in five days. ...that I can present.
I imagine that is so difficult. Parkinson's is so hard to understand if you don't have it or spend a lot of time with people who do.
me too, when there are times that its so smooth,you cant even tell i have it
I very much relate to Heather with the off and on stuff, and the dystonia. I don't have the DBS though, and am not on any pharmaceuticals right now. All of this keeps happening though. Extreme dystonia and instability. GI interference. Started hitting harder in 2009, sporadically. Now takes me six hours to get ready and leave for an appointment.
Many of the people on our Living With Parkinson's Meetup panel struggle with dystonia as well. For many, it has gotten considerably worse over the past couple of years.
G'day Heather, since meeting you in Kyoto I have been following your progress and your podcast was so informative. Almost 7 years since diagnosis, although it's never the same for any two people, but as it has progressed I can see many parallels. My Neurologist has suggested I should have DBS sometime in the next 2 years and he is suggesting GPi as I enjoy singing immensely.. I have also just started getting dystonia in my toes mainly each morning and a little bit at night before bed. I find that Pramipexole helps but there's a limit to how much I can handle of that stuff. In Australia they mainly use STn so I'll be going outside the norm. My big concern at the moment is the dystonia may spread to other areas and it's interesting that DBS controls yours but doesn't eliminate it. Singing in a choir and a sudden bout of dystonia in the toes tends to be mutually exclusive. There are lots of pros and cons for both types of DBS to consider, you only get one shot at it. I now find making decisions difficult which only adds to the dilemma. I can understand whiy some never make the step to have it done.. Your podcasts are great, thanks for sharing your experiences and putting it out there, keep them coming. Take care. Stephen.
Thanks, Stephen. We are adding new interviews and resources to this page regularly. Maybe worth checking out as you are in the decision stage: davisphinneyfoundation.org/deep-brain-stimulation-dbs-resources/
do you have anyone in your parky group going through parkinson and lewy body dementia? any articles really apprieciate thank you
Hi Norman - Here's an article about it. davisphinneyfoundation.org/difference-lewy-body-dementia-parkinsons-disease-alzheimers-disease.