Gifted: On Parkinson's, Poison, and Perception with Heather Kennedy

Heather is a "gift" to the Parkinson's community, and the way she communicates her experience living with Parkinson's is like no other. I can't wait to talk to her about her latest article and being "gifted" with Parkinson's.

[@juliet-m31]

I love Heather's transparency. She speaks her mind very honestly. All the good and bad. 🙂

[@davisphinneyfdn]

Agreed!

[@CF-wn2ce]

I hope Heather sees this.....I love you! Thank you for sharing on these and other videos. I'm 42 and just started treatment but have been dealing with this for at least a decade trying to get help. These videos are life giving.

[@GoldenAgeDave]

I was diagnosed with PD 1.5 years ago. I am a teaching tennis pro. I was NCAA All American back in the day. I’m 57 years old now. This was very helpful to watch. I can’t seem to talk about this with anyone. I WANT to but then I just can’t. I tend to tell everyone I’m fine and good when I’m not. Does anybody else go through this? I’m scared. My cognitive seems to be getting worse. I’ve lost so much confidence both mentally and physically. I just can’t discuss it with friends or family. Just venting. Blessings to all.

[@davisphinneyfdn]

Thanks for your message. What you're describing is not uncommon, and you're right: it's hard to talk about. A neuropsychologist might be a good person to talk with. In February, we hosted a conversation with one in our Care Partner Meetup. Here is the video: davisphinneyfoundation.org/cpmu-february-2024-mark-mapstone/

[@sharonabel7221]

I LOVE HEATHER ! Every time i see a video with her I learn more, laugh more, and am always amazed and inspired by her.

[@12357de]

Heather Your beautiful and smart I have Parkinson’s I injoyed this time you have posted thanks

[@careydurham6394]

Just discovered you HeatherKennedy and I’m pretty sure you’re my hero and my newest best friend. You’re honesty is so refreshing!!!

[@charleslobaido8403]

Love you guys.. thanks for letting me feel like I'm not alone.😊

[@Jennifr1966]

My husband has had Parkinson's since he was in his late 40s. Thank you for this interview. Gives us many things to think about.

[@FrussieB55]

Heather, Your sense of humor is something I can relate to. It's what keeps me going!

[@isabellefisher8790]

Thanks to both of you. I don’t meet anyone else who was diagnosed “young” so this really resonates.

[@davisphinneyfdn]

Thanks for your comment. As a side note, our Living with Parkinson's meetup features many people who were diagnosed with young onset Parkinson's. If you're not already signed up to attend our sessions live, you can do so here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/

[@isabellefisher8790]

Thanks for the info! Xx

[@michaelburr7028]

Thanks for posting this video. I love your offbeat sense of humor! I am a physical therapist and I have young onset Parkinson’s. Surprisingly, many of my peers who think they understand Parkinson’s haven’t a clue. Very frustrating. But you just have to laugh and try to educate them and then just keep on keeping on. Great to see this lovely lady dealing with all these things that I could identify with and maintaining her wicked sense of humor. Wish you both all the best!

[@davisphinneyfdn]

Thank you for watching, Michael!

[@pgtq]

Dear Heather, I love what you said about service....people don't realize that it helps the giver as much as it does the receiver. There's a Chinese proverb I like which says,"Help your brother's boat across and yours will reach the shore." Also, re: the subject of outliers. I get a certain amount of attention because of how long I've been living relatively well with this damn disease. But the people who really deserve praise are not those who are fortunate enough to find ways to manage their condition, but the people who endure the hardest symptoms and still keep going, They are the ones who should receive kudos. Bless you for your honesty, drama and good humor. Pam

[@davisphinneyfdn]

Thank you for watching, Pamela, and for your lovely comment. Agreed!

[@racheltevaseu6508]

thats the exact feeling I get...thank you for being transparent, you ROCK !!

[@davisphinneyfdn]

Thank you for watching, Rachel.

[@FredMoore-lr9gt]

It is so difficult to explain how you feel no day is ever the same. You are lovely and speaking to all of us who are suffering. Blessings to you and all of us who are having the same experience.

[@davisphinneyfdn]

Thanks for your comment! We'll be publishing more content with Heather very soon. A new podcast featuring Heather and Kat Hill launches 4/24/24

[@MIMI-jd6ll]

I also watch the group Heather is in I have enjoyed the information you all have supplied to me in my fight with Parkinson’s since 2007 thank you all so very much and you the chats that uplift me and so many others in our Darkest times. ❤

[@davisphinneyfdn]

Thank you for watching, Mimi!

[@pgtq]

Dear Heather, I hope you know how much I like you! In case you're ever in NYC, word has it that the best DBS adjuster is Joan Miravete who's with Mt. Sinai downtown at 14th St. Just thought I'd give you that lead in case it's of any use. All the best, Pam

[@anjaschwalen8700]

Thank you so much for sharing so honestly. It is certainly humbling, and I recognize my own smugness and being judgy about other people. I'm looking forward to reading your article. Yes, Gift is poison. Maybe because it often came hidden in a present/gift like a goblet of wine :-). Poisoned thoughts are something I'm very familiar with, and yes we need to recognize and fight them. Again thank you and be blessed.

[@davisphinneyfdn]

Thank you for watching, Anja! We are so grateful to Heather for her willingness to be open and share her true experience.

[@Kieran0116]

It's a tough gig Parkinson's.... I have it 24 years ... dystonia is me worst symptom by far .... ye find ways of getting through the tough days ... and sometimes humor is the best medicine ....

[@davisphinneyfdn]

Thank you for watching, Kieran. Let us know if you've found any good management for your dystonia. I know our community would love to know about strategies that work.

[@frankhunt2537]

Q

[@splashesin8]

I'm catching up the beginning part. My friend this morning actually called me to give me seven hours to try to be ready to ride with her to get a few errands done, and understanding if I can't do it. I just need to leave her a text around 5pm if I can. She's one of the few that really gets it most of the time. I'm amazed. For about a year she didn't have a phone, and would just pop up randomly but knew it would be awhile for me to get to the door if I could, to even knock back and that putting something on my usual naked self would be extremely challenging while she or anyone is outside. Dressing is a very logistical situation always.

[@davisphinneyfdn]

What a great friend, Audrey! It was great having you live with us today.

[@splashesin8]

@@davisphinneyfdn I made it out with my friend before the extra freezing weather. :) I am still trying to recover, from the after effect of my muscles doing what they do while I intermittently sleep. My friend retrieved a few shopping carts for me to attach myself to like walkers. It was a marathon of sorts. We were on a scavenger hunt for the "Minute mushroom" skillet pouches. A stranger might think that I'd done a 10k last night. ...or that we must've gotten smashed or something. Nope. :) Just grocery and supply gathering and loading and unloading, and wrestling stuff into the freezer. It was good getting out, even though today is like: Send In The Clowns.

[@brucepotts1275]

thank you for sharing this! Thought I was the only one with DBS programming issues.

[@penhattan]

heather you're an inspiration

[@michaeltanaka9011]

I’m going through inconsistencies with DBS for dystonia. Going through an evasive procedure like DBS, I expected more, especially what I had to go through. I understand there’s no guarantee, I too, have frustration not being able to get through the day. I have a planner but lucky to complete a couple easy task. When I see people jogging or having a good time, I forgot how it feels to be normal.

[@davisphinneyfdn]

I'm sorry you're not getting the relief you hoped with DBS. I hope you are able to a place where it is at least more consistent in giving you symptom managment.

[@peggyharris6156]

I'm so tired of pain

[@jeanniewrigley3677]

So am I

[@binascraps2084]

Thankyou heather

[@dsa827]

Spot on!

[@StaverMarilyn]

I love you all! Im not on this island alone ♥️

[@davisphinneyfdn]

We're here for you!

[@antoniolopez688]

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? Only want to share my experience with this disease.

[@williamallen7836]

There are several medications that have been available for a very long time to help treat many of the symptoms. There is also physical therapy that can help improve movement, balance. Like every neuro degenerative disease, there is no cure.

[@larrygullickson9262]

If the Medikation is not properly taken you do not Profit from it, 30 minuts before Eating ,meals, no sooner than 1 hour and a half after eating. I have Parkinsons since 15 years, Larry

[@mickvanwes]

I had GPI DBS in summer 2020. Before surgery I was on 3 Stalevo, 2 Amantadine, one 3MG Neupro patch, and one Azilect. After surgery, I was told to stop taking Amantadine and the Azilect which I found surprising because GPI DBS targets the side-effects of Dystonia and Dyskinesia. After a year of loss balance, festination, and crashing into things, I got put back on the Amantadine and Azilect. My balance returned and festination stopped. In case your meds were reduced after GPI DBS, maybe you need check that. Different than your issues after DBS but if your meds were reduced after the surgery it is something to consider.

[@davisphinneyfdn]

Thank you for watching, DestinyRoad, and sharing your suggestions. There's so much to learn from others traveling a similar path.

[@madelineschroeder7026]

What a delightful person. Heather’s honesty and outlook is so valuable and refreshing. Thank you for sharing.

[@akim111]

I have GPI DBS too for Parkinson but after programming, Dystonia has become an issue . No change in Rx.

[@christineallred9130]

You’re the best.

[@tinaepstein9601]

I’m in stage 5 and feel like I’m free falling to my death …dystonia probably being my worst symptom!! I’m an artist but now I sit in my brand new lift/recliner and play bridge and write all day.

[@davisphinneyfdn]

I'm so sorry, Tina. Thank you for watching. I hope writing is providing a good outlet for you to express how you're feeling and experiencing everything.

[@kathleendowner6506]

Hi sending best wishes and was interested what are you writing I write and enjoy it so much ❤️

[@donkelly2319]

So what is the relationship with broken bones and injured backs / hips and DBS - what needs to be fixed first? Sometimes I think my back prevents DBS from working. Turn up the amperage and I can't walk. Also when back is worse I can't walk. IF DBS not fixed then do we keep ending up with injuries? Can DBS be optimized with broken bones? MY neurologist says neurologists don't care about back injuries (don't need to focus on them).

[@christineallred9130]

Does it take awhile to get appointment for adjustment?

[@thomasfortenbaugh5252]

What causes freezing in people with Parkinson's

[@davisphinneyfdn]

Hi Thomas! Here's a video all about it: davisphinneyfoundation.org/webinar-recording-exercise-freezing-of-gait-and-postural-instability-in-parkinsons/ Here's a short blurb from that post that may be helpful: "Unless you are walking in a space that is completely devoid of stimuli, you are dual tasking. Dual tasking causes you to freeze because Parkinson’s impacts your ability to do multiple things at once. That is why freezing typically happens when you are attempting to manage a lot of stimuli such as boarding a plane, grocery shopping, plugging in a seatbelt at the beginning of a road trip, arguing with someone, and so on. FOG can also be more common when your medications are wearing off, haven’t kicked in, or are giving you “too much” relief." You can also learn how to reduce freezing of gait here: davisphinneyfoundation.org/6-ways-to-reduce-parkinsons-freezing-of-gait/

[@pgtq]

I didn't know you were a dancer!

[@christineallred9130]

Have you turned your programmer back on?

[@phyllissaagge]

❤

[@marycain5668]

Getting thru the airports in USA impossible. In Cancun amazing! The difference is mind boggling. Mexico gets it. We are way behind. However navigating the resort, without railings to the restrooms, beach, restaurants, walking miles impossible. Getting in an out of cabanas, or beach chairs ridiculous. Shopping without a cart challenging. Getting into out of a jacuzzi tub.... Difficult.

[@christineallred9130]

Do you only have DBS one side?

[@bettyrivera9244]

Heather, you are super nice. I would like to be your friend and share information . I’m had DBS three months ago.

[@GoProGoalieUzi]

Oh nice ❤I have been referred by my mds for dbs. We will see. How are you doing?

[@NenadBach]

Heather = Brilliant

[@penhattan]

keep going

[@penhattan]

Mark knofler sings i want my mtv... but i want my DBS...

[@christineallred9130]

What agonists were you taking?

[@MikeMercury]

hello heather

[@tinaepstein9601]

KZbin: The Art of Adapting Parkinson’s

[@Cure4pd]

the first thing most people say to me when i tell them i have PD is "im sorry". i love wathing Heather she so honest and makes me smile, my Dr.s . Dr. Okun & Dr. foote are me docs. i wouldnt want any other people to take care of my PD

[@davisphinneyfdn]

Thanks for your comment. It's great to hear that you are happy with your care providers! And, yes, we agree: we love Heather, too!

[@thomasbeckett1245]

The dr, doesn’t make money to recommend vitamins b

[@susanround9741]

The German word for gift is not poison. The German word gift means poison.