The Realities of ON and OFF Times in Parkinson's with Heather Kennedy

Heather Kennedy is a Parkinson's advocate, writer, speaker, creative, and storyteller. During this session, we talked about the challenges of OFF, what happens when DBS isn't all it's cracked up to be, how to keep going when nothing is going your way, and using humor and friends to live better with Parkinson's.
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[@vanessayim4929]

Dear Heather thank you so much for sharing. I m so afraid of my PD condition. Really help by listening the information & try to learn to cope.

[@antondelacruz9362]

'I never know what to expect.' God im so thankful to hear other people saying that.

[@skookum86]

I love your down to earth, yet eloquent, and high end vocabulary describing feelings I have but have difficulty expressing to others. I suppose in blue collar terms “You talk good”. 😊❤

[@davisphinneyfdn]

Thanks for your comment. We love talking with and listening to Heather, too!

[@FusunDemirer]

Heather you hit the nail DBS you are my hero !

[@denajessup6675]

Heather, I LOVE YOUR PERSONALITY! You gave me joy…a smile! Felt so good to smile! 😮Genetically there is Alzheimer’s and Parkinson’s in my mom’s side of the family. She died of Alzheimer’s as well as her mother. Her great uncle had Parkinson’s. I have moderate Alzheimer’s and now I have symptoms of Parkinson’s disease. Started with shaking in my hands. Then I had all these other symptoms hit me over short period of time. Balance issues- I hold on to the wall when I am walking and enter another room. Parkinson’s is trying to me get me in the Parkinson’s stance from leaning over with my head to shuffling my feet,… I felt I have no dopamine. Did research on how to get dopamine working for me from special teas to protein to exercising and walking. The day I felt my dopamine not there I had the worst drop. I felt like I dropped in a deep dark (depressive) hole and I knew there was no way out. I fell apart for a while that day and knew I could not live like that. So as you have already read above I worked on what I could to feel better am I am despite living with Parkinson’s and Alzheimer’s.😊

[@davisphinneyfdn]

Thanks for your comment and for sharing your story. We are here for you!

[@MiguelSanchez-hi2kd]

Heather Kennedy is a genius fighter advocate for Parkinson's. She is so courageous turning the outrageous and absurd encounters and adventures that she has into humor, into art, into lessons, checking herself with buddhist and the mystic christian texts. At her worst of times she maintains her humor and knows that none of this is permanent.Listen and learn. big hug ya'll.

[@aloul441]

😅😅My very own fundraiser for parkinson's disease and I shall name it in memory of my father who was a victim of my insatiable desire for material things so much so that I neglected to give him anything before he died. I selfishly thought he didn't need anything even when he practically begged me for my loose change when he was in the states. That was how insensitive I was then and I can only pray that he can forgive me for failing to give to the one man who mattered the most to me. My own pride 😤 will my undoing and it is to this end that I am doing this fundraiser. I never told anyone about my disease because I can not bear for people to see me weak and helpless even when I am getting there anyway. To my friends who are avoiding me; I forgive you for I certainly don't want to be s

[@aloul441]

😅

[@aloul441]

❤

[@lorrainebush7670]

I WENT TRU ALL THAT SEEING DIFERENT DRS INCLUDING 3 OR 4 NEUROOLOGISTS AND NEUROSURGEON,S, 2 GP AND RHEUMATOLIGISTOVER A PERIOD OF 10 YEARS BEFORE I WENT TO REHAB AFTER CERVICALSURGERY AND THE PHYSICAL THERAPIST SAID I NEEDED TO BE CHECKED FOR PARKINSONS WENT TO MY GP AFTER GETTING OUT OF REHAB WENT TO GP WHO SENT ME BACKTO A NEUROLOGIST WHO I HAD BEEN TO 2 OR THREE TIMES SAYING THT I HAD BRAIN FFOG ND MANY FALLS,ETC, TTHIS TIE HE SE ME TO GET BRAIN SCAN FOR DOPAMINE LEVELS 😂. BY THIS TIME I COULD NOT WALK AND WAS IN. WHEELCHAIR

[@oli12bhai25]

Hey Heather..... U have put the philosophical talk, straight talk and humour all weaving together.... Amazing

[@davisphinneyfdn]

Thanks!

[@matteagles35]

Thanks so much for the mention Heather , Im still learning from everyone else (:)

[@richardgonick931]

I LOVE HER personality and attitude z.,

[@jerrym1070]

I hope you collaborate with one another more often . Just another great video with Heather ( that mind is fully intact )

[@paulkennedy9824]

I am very impressed with Heather's openness to be honest about the painful journey with this disease. I have only one comment to make. I see so many other severe illnesses that exist that has a parallel symptoms. These situations have so many great meaning that you are helping . My situation has also been helped see that we see that what you are talking about really is very meaningful Thanks

[@davisphinneyfdn]

Thanks for your comment!

[@sharonmaplethorpe9168]

Great chat from you guys as always - it makes my day so much better❤

[@carbonejack]

Super conversation. Thanks so much.

[@chrisg5583]

Love the new glasses Heather, and the sofa. Thanks for sharing your thoughts, describes my life also ❤

[@kathrynaldrich5441]

I could listen to you all day, Heather Kennedy ! You're so witty and wise. I was diagnosed only 2 years ago in 2021 and this second year has been so rough with massive dystonia in my legs and feet. I was surprised to hear that the symptoms that brought you to consider DBS are much like mine. IDK why i thought DBS only used for tremor dominant folks, so thank you for opening my eyes to other possibilities. My speech has deteriorated significantly in this post year so I'll float that idea by in my next appt with my care team. Anyway, love your hair, Heather, with the dark/light contrast and told my hairdresser to replicate it but she couldn't quite get in that silvery white. Would love to hear your thoughts about any of these ramblings of mine

[@davisphinneyfdn]

Hi! Thanks for your comment. The best way to get in touch with Heather is through her website or KZbin profile. Here is her website: www.kathleenkiddo.com And here is her KZbin profile: kzbin.info/door/jrzP3Pt218UZGma-jijzPA

[@hectordevilla8762]

Ms Heather, i was diagnosed more than 10 years ago and had DBS on 2018 with. I want to know if i committed mistake because i only had mild symptoms, no fdystonia when i decided to undergo DBS on the prodding of my neurologist.

[@dixiehuthmaker1623]

Love both of you so much!!! You can't imagine how much you help me!! Is there a book with all this info available? It's like a treasure chest of great info. Please write a book or tell me where to find it. A zillion thanks

[@davisphinneyfdn]

Hi there Dixie! So glad to read your comment!! I'm not sure if this is the kind of book you're looking for exactly but if you haven't yet checked out our Every Victory Counts Manual, I would really encourage you to do so!! davisphinneyfoundation.org/every-victory-counts-manual/

[@jamiecapobres6339]

😅😅😅

[@jrmds2108]

I'm unsure if I started the journey last year or am starting this year - result of scan will tell me BUT you ladies are amazing and whatever they and you have done... keep it going!!! Blessings on you the moist poignant part thus far is the lack of "joined up thinking" I went in for eye op, two days later I had bladder retention issues (A&E) and am now stuck with that, I have "numbess" all over and - depending on - the scan results I'll be on more pills!!! I liked the early statement - getting comfortable with uncertainty!!! Frightening yet comforting

[@davisphinneyfdn]

Thanks for your comment. Getting comfortable with uncertainty can be hard, but it's a useful skill to develop, regardless of Parkinson's!

[@12357de]

Thank u heather I love listening too u your so much smaller then me but I always watch u from start to finish

[@donsemi6946]

Just joined because I just found PARKINSON laying around. Thanks for the info

[@splashesin8]

Barcelona! Almost makes me want to put myself through traveling.

[@stephendunn2733]

Heather you are truly an inspiration and a great ambassador for Parkinson's. I recently had the DBS "talk" with my neurologist and he is recommending GBI even though in Australia most people have STN as the target. I was under the impression that DBS helped control dystonia quite well, and yet you are having ongoing Botox treatment in your feet. Not sure what to do now the decision is getting harder and harder. I'll be looking with interest for your next update on your Parkinson's journey. You're an inspiration to us all Heather, I really appreciate your informative chats, take care.

[@davisphinneyfdn]

Thanks for watching, Stephen.

[@christineallred9130]

I love listening to Heather I’m going to have my 2nd DBS in August. My doctor told me has anxiety about me.

[@stephendunn2733]

​​​​​​​​@@christineallred9130Heather is so inspirational. That sounds pretty tough though. Perhaps suggest to your Dr to try CBT or mindfulness techniques... Oh and good luck with your second DBS I hope it goes well for you.

[@johj1344]

Thanks for your video. Im scared of sinemet.i live in New Zealand. Ive been diagnosed for 6 months now. Finding walking very hard. Haven't the confidence to go out shopping etc. Im in my early 70s. But thanks for sharing

[@davisphinneyfdn]

Every person must make their own decisions about medication, but sinemet may help you feel more confident walking and getting out. What causes you to be afraid of it? Also, working with an occupational therapist and/or physical therapist may help improve your confidence and ability to go out. Please reach out to [e-mail] if you have questions about sinemet or any other treatment for Parkinson's.

[@davestahl6676]

I was afraid of Carbidopa levodopa during my first year as a Parkinson's patient. My neurologist talked me into it, and it's improved my life vastly.

[@cdp6896]

Please do more of these one on one!

[@malanyamonette]

Thank you 💜

[@sreenivasduggiraala8267]

Hi Heather I am a YOPD diagnosed about 20 years ago and have a DBS. Can we talk about mental health issues pls

[@parkinsonsmysecondshadow]

PD what a mate. Friend I never wanted but one I am up to managing. Great clip helps.

[@hectordevilla8762]

Few months after DBS i felt really good ,now I'm back to pre DBS symptoms. My neurologist told me that my PD had progressed.

[@davisphinneyfdn]

Thanks for your comment. Due to progression of Parkinson's, DBS does need to be reprogrammed/adjusted from time to time. You might consider connecting with a DBS-specific support group. Email [e-mail] to request the group details for an online support group led by one of our ambassadors

[@yvonnejones8286]

I assume you gave up driving. I’m 87 and miss my independence. You’ve help me a lot. Thank you.

[@davisphinneyfdn]

Thanks for your comment. We are glad to have helped. Reach out to us at [e-mail] if we might be able to help in other ways or answer any questions you might have. We're here for you.

[@pdavenport6]

# 3. I also would like to not only have all my Dr working together . I requested that all meds be vetted by the M D S. ! I also requested that be included in the care planning. I also have many of my Drs a book called "A life sentence without chance of Parole" by Richard Alexander

[@jaminrei1602]

I'm the only one who needs help, sometimes there is no medicine to buy, I have PD, I'm from the Philippines

[@davedill680]

As the one year anniversary of my Dad's death approached, I came across the youtube channel "Hospice Nurse Julie". I think you would appreciate her channel. My Dad died of an inoperable fractured C2. Parkinson's was listed as a contributing cause. It was the first my family heard about this condition.

[@davisphinneyfdn]

Wow, Dave. That must have been quite a shock on top of your dad passing. I'm very sorry for your loss. I have heard about Julie's channel, but i'm going to go dig in a bit more now. Thank you for the reminder.

[@pdavenport6]

I also gave many hospital staff the book by Richard Alexander

[@donkelly2319]

up till 12 minutes: DBS - Things I wish I would have done differently. 12 minutes - physical therapy 13:30 - Young Onset Parkinson's Disease

[@tamragarner7907]

I had been in the process of starting a death doula business when I was diagnosed recently with PD. Now I don’t know whether or not to move ahead with the training and business development. I live in a remote mountain valley and all my healthcare is 2-5 hours away (so requires 5-12 hours round trip). I have at least one trip a week which can wipe me out an additional 1-3 days. Maybe my new job is taking care of me? Any insights?

[@davisphinneyfdn]

Thanks for your message. Many people work for years while living with Parkinson's, but of decisions about this depend so much on individual circumstances. Here are two blog posts about this topic. davisphinneyfoundation.org/how-to-manage-workplace-stress/ davisphinneyfoundation.org/working-full-time-with-parkinsons/ You might also consider connecting with one of our ambassadors, many of whom have experience balancing self-care and their work life. davisphinneyfoundation.org/ambassador-search/ We'd be happy to arrange a time to talk directly with you, too. If you'd like to connect, please email us at [e-mail]

[@christineallred9130]

Have you have DBS once or twice?

[@kitkat20221]

Great collaboration. Thank you for the wonderful information. Heather would you please share with me the information of your therapist as I am live close to you. I have not been able to find it a PT for PD close to me. Also does your wemon group take in more members? I would love to join if I could.

[@davisphinneyfdn]

Thanks for your comment. You can reach Heather through her website: www.kathleenkiddo.com/

[@RobbofromCronulla]

Sometimes watching this is almost like looking into a mirror

[@pdavenport6]

Sorry about the typos

[@nosilverbullet4pd998]

Thanks to you both. Here for more on Daphne and B1 HDT kzbin.info/www/bejne/n6aUp31umrNrfq8

[@cdp6896]

I’m so scared, hotline #?

[@therealkathleenkiddo]

PwP DO need more immediate touchstones. I wish there were more options too.

[@beaz.c.5172]

What is DBS?

[@davisphinneyfdn]

DBS is a treatment for Parkinson's that involves implantation of electrodes in the brain. It is similar to a cardiac pacemaker, except instead of regulating heart function, it acts on the systems in the brain that are affected by Parkinson's. Here is an overview of DBS on our blog: davisphinneyfoundation.org/the-what-why-how-more-of-dbs-for-the-newly-diagnosed/

[@splashesin8]

Kind of like iOS updates and what happens with voiceover accessibility after each one, including each app update for every app. I don't know any other device as helpful as iphone, yet, in terms of access to print and navigation of You Tube, even though some of it waxes and wanes. It was a game changer. I'm nervous about technology but, I'm not saying never.

[@user-ds8ck1px9z]

How old when diagnosed?

[@davisphinneyfdn]

Heather was diagnosed with Parkinson's when she was 40.