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

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

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.

Heather you hit the nail DBS you are my hero !

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”. 😊❤

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.

I LOVE HER personality and attitude z.,

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

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.😊

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

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

Super conversation. Thanks so much.

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

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

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

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

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

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

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

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

Please do more of these one on one!

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

Thank you 💜

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

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.

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

I also gave many hospital staff the book by Richard Alexander

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

# 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

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

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.

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.

Have you have DBS once or twice?

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

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?

Sometimes watching this is almost like looking into a mirror

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.

Thanks to you both. Here for more on Daphne and B1 HDT ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-iu1vJ8eN8HM.html

I’m so scared, hotline #?

Sorry about the typos

What is DBS?

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.

How old when diagnosed?