Parkinson's is Hard: Living with Parkinson's Meetup - October 2022

In this Living with Parkinson's Meetup, panelists share their every day challenges with Parkinson's including working, eating, self-care, and more. See below for specific chapters.
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Find the transcript, show notes, and more for this Meetup here: davisphinneyfoundation.org/web...
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0:00 - Introduction
1:42 - Meet the panelists
5:46 - The every day challenges of Parkinson's
16:27 - Working full-time with Parkinson's
26:49 - Food and Parkinson's
29:40 - How to make accommodations at work
39:31 - Gratitude for care partners and care givers
48:22 - Living with depression and Parkinson's

[@dianenone683]

Glad I found this channel! I've been diagnosis in June and still digesting. Living with this for about 5 years I'm 65 now.

[@FuriousTimmy125]

Welcome🤗

[@rajgupta3601]

I have learned lot from this group and how they deal with it . I regulate my meds and keep track of dyskinesia time and how long it last and what helps . I take my BP three or four times day and take bp meds when it goes and skip bp meds when my bp is low . I structured my day . get up 7 am take my sinemet ,do exercise 9 am to 9.30. i listen to different lectures of PD, i do trademill from 1.30 pm to 2 pm.thanks to all this group

[@justinmariana12]

I am 71, was diagnosed two years ago. I was surprised at how little people know about PD. I do a light workout every other day. I never know how the day will turn out. Yesterday was a down day, very little energy. I have fallen 7 times this year. I started doing medicinal cannabis again. Less anxious and a bit less pain. I have had spinal surgery and my body is riddled with arthritis. I am looking for a new neurologist, they do not listen to me and never pick up the phones. My son and his wife moved in to help me.

[@davisphinneyfdn]

It is surprising how little is understood about Parkinson's. We hope you find a neurologist who works better with you. Let us know if we can help. You can always reach out to us at [e-mail]

[@delysmurphy8103]

God bless you all . I lost my husband at christmas . One day at a time was our motto .

[@therealkathleenkiddo]

I'm sorry for your loss DELYS. Thank you for staying connected. As an aside, we are considering a talk that includes loss and grief.

[@FuriousTimmy125]

I’m so sorry for your loss! I hope you can find some joy during the holidays.

[@andydavis3968]

Thanks everyone. My Dad's been diagnosed and just finding out what I can online. Appreciate all of you sharing your experiences and will encourage my Dad to watch.

[@reub5439evil]

I can relate to just everybody here in one way or another. I was officially diagnosed with PD about four years but in hindsight have been trying to deal with it for 30 years. I am now 83 years and still working part time too maintain my sanity.

[@rezabahadoran8506]

Hi dear sir I appreciate you 🙏🙏🙏

[@dorishho3107]

7

[@vickiblackburn3177]

This was so valuable to me to hear others have similar symptoms and just keep adapting. Concerning depression right now-it is so natural to blame everything on Parkinson’s but having suffered from Seasonal Affective Disorder for years, getting treatment in form of light therapy, then not having the SAD for several years I was surprised about two weeks ago to feel myself suddenly depressed. I recognized that we had been experiencing beautiful sunny fall weather, then suddenly cold and gray skies for a few days. Those gray days set off the Seasonal Affective Disorder again. I need the light therapy to rescue me. So if you recognize your depression is correlating to the change of seasons and decreased sunlight on these fall days it might not be totally attributable to Parkinson’s. Get checked for SAD.

[@MrScottCPA]

😮😮😮

[@MrScottCPA]

C 11:02 11:02 11:02 11:03 and 😊

[@barbarabreen4780]

Thankyou for sharing,Iam learning every day my husband was diagnoised a year ago…with ParkisonsDisease….he is doing much better…..great to have you people for support….I listen…..in when I can

[@donsemi6946]

Just was diagnosed in Oct 2022. Has been sneaking up for the last 10 years, NEURO problems. Been learning about all everything. I was living in Mexico now back in MN. Shoot! Long journey ahead. Thanks

[@robin-ew4fs]

Thank you for this wonderful talk

[@davisphinneyfdn]

You are welcome. Thanks for watching!

[@HubertEscarpeta]

I've been diagnosed I 2023 but I've been living with Parkinson most of my adult life

[@lindabrock4286]

I haven't learned to pace myself .

[@lindabrock4286]

her experence is so familiar

[@dannalee2015]

Thank you everyone for sharing your struggles. I am at year 3 since the diagnosis and I am at a real "shift" in my progression right now. Like Kevin said at first we can "rely on our moxie" but I am just seeing how this S#*% is getting real. You all reminded me to slow down and have a little more grace and compassion for myself. You are all so awesome and I applaud each of you for helping others! xoxo

[@davisphinneyfdn]

Thank you for watching, Danna. I'm sorry you're experiencing and noticing more decline. I hope you continue to join the crew each month.

[@garypillans1983]

Hello everyone I am in scene some of effects in too many ways. Declining health find that Maniac side effects more bothersome and troubling then the motor function. I am told that my health is declining. I have not fully aware have a lot of the things my family and friends are telling me. I seem to be right in the our experiences that I sometimes cannot describe to my family. I feel that just kind of leave me feeling that I cannot communicate. I am constantly told that my speech should not be understood. Set alarm makes me feel that I am out here stranger blowing in the wind. Right now very lonely the scary time. Even though I have family all around. Like so many of us I can identify with some of the experiences. Trying to gather all my strength to keep fighting. Experiencing mini side effects that I was not even aware affected us thank you all encouraging words ensuring your struggle. My best wishes to all of you there's a battle against our disease. Sometimes the only contact others is here and comment. Thank you for sharing

[@isabellefisher8790]

Yes: I was moving too fast! But now, one event a day is all I can manage well.

[@judygrainger5380]

Judy Grainger, from NZ.Diagnosed 1 year ago Am lucky in that I only have "lower limb parkinsons" Took at least 10 years to get diagnosed, Was also possibly diagnosed with Herditary Spastic Paresis" bur a Trodat scan more confirmed Parkinsons. Being on the medication "Sinemet " has made such a big difference.

[@davisphinneyfdn]

Judy - I'm so glad your meds have made such a big difference. It's such a relief when that's the case. I'm sorry the diagnosis took so long and am glad you have something that works.

[@ginabates6693]

Thank you all for sharing. Husband has PD since 2016 and we are trying to live strong and enjoy our life.

[@davisphinneyfdn]

That is great, Gina. It is possible to live well and enjoy life with Parkinson's.

[@nicholasiadevaia24]

40 male. I have been obsessively studying this disease for the past several months. I found a rest tremor in ring finger. It’s mild but it’s there. I also get other mild symptoms but nothing severe yet. Watching this video scares the hell out of me tbh. I have an appt. With a MDS in January. Gonna ask for a day scan to confirm or deny. I’m not strong like you guys. I don’t think I can accept a diagnosis like that and I’m not sure I will. I wish all of you the best of luck.

[@FuriousTimmy125]

Hi Nicholas, feel free to reach out if you need to talk about it. Finding community is so important.

[@RollieFingers59]

I work in the telecom industry. I climb poles, ladders, crawl, kneel, bend pull and do a lot of fine motor work with my hands. I’ve been back to work for 6 months and it’s extremely challenging to say the least. Great forum here ! Thank you all!!

[@davisphinneyfdn]

Thanks for your comment. We're happy to have you with us.

[@racheltevaseu6508]

Thank you for this video clip...I have YOPD since 2010, dx in2012, and a lot of the stresses and issues that the panel of speakers shared I can identify with, especially Sree and Amber and all of you...I have DBS, and still have some difficulty finding the right setting of stimulation. Thank you Melani, Heather, Kevin,and all the rest...God bless@

[@cab5917]

Very good session. TY

[@lisamorgan2122]

Thank you for sharing this. It's so helpful.

[@kevinmcgovern6835]

Thank you - this is very helpful!

[@cameravisionnyc]

My wife died last May she had Parkinson's for 23 years ,I could take care of her for 21 years at home then her disease took off ,I can say from my expierence that her health even with so many symptoms with the latest exercise movement therapies plus drugs was quite managable ,then her brain slowly closed down and she died in a coma of Parkinsoniasm ,so says her death certificate, I miss her so much . I would say live life as well as you can ,sad part is we lived through so many possible cures that never came to much in clinical trials, the gold standard is still Sinemet.

[@FuriousTimmy125]

I am so sorry for your loss, Michael.

[@GoProGoalieUzi]

Sorry for your loss my friend. I am 45 and was diagnosed at 40. I have always exercised and continue to push myself. I am now at 25 sinimet per day. I am scheduled for dbs within months.❤❤

[@splashesin8]

It is now taking at least a week for me to recover from any venture outside to do errands. I still remember stuff, I just feel trapped in my body having it's way with me, often. I try to make every journey out count to the nth. After I sleep, all bets are off. Hahahahaha Heather❣️ The baby picture. Love it! The speaking thing happens with me the whole first half of the day. Trying to signature things all month, has been kind of the most upsetting thing, that my hacks don't always work on like before. Today I early voted, with the headset and tactile controls. People will acknowledge one thing but not both things. It's like they think there's a quota of just what they recognize first. Once again, someone wanting to take the chair away from me. Nope.

[@Dee-mj3pu]

Thank you!

[@rajgupta3601]

Its wonderful to see and listen to group

[@SDWP]

Great crew and great convo! I love the topic. It's so important to discuss the challenges and perspectives so that other's with PD don't feel alone in their walk with PD. Keep up the great conversations!

[@sandijack6724]

Hi my name is sandi… i am 75 years old and my hme is in Canberra, Australia …. I have just found this group …this year i was diagnosed with 3 different conditions ..Severe Peripheral Neuropathy, Aphasia and Parkinsons …. It was during a speech therapy session for the Neuropathy that i was asked if i had thought about what i would do when I could no longer speak… I immediately had a panic attack in his office as the Aphasia had not been mentioned … i now realise that symptoms I’ve had for years. And I’m scared…thank you for these group chats …🌳🌺🌺🌺🌳

[@davisphinneyfdn]

Thanks for your comment. That visit sounds really tough. Our meetups occur live in the early morning hours in Canberra. If you're an early riser, we'd love it if you'd consider signing up to join us. You can do so via the link in the description above.

[@stuartkirkwood173]

Very helpful, appreciated the openness of all.

[@alecspeer]

Normal folks without PD (and without close family members with PD) cannot understand PD and its effects and symptoms. They can hear our words, but we speak them while in a different world. Even with hearts full of empathy, they cannot experience what we with PD experience. I am 75, diagnosed at 71 in 2019. Can see now how I had symptoms before then. My situation is not good as a few symptoms are daily issues. But I get by okay. I cannot imagine working at a job.

[@rebeccarosenlum1798]

I'm in the very stage that Kevin describes. This is a terrifying stage in that the stuff that used to help -- rigorous exercise, for instance -- no longer helps. The frequent falls are the pits -- I feel like, and probably look like, a punching bag. This conversation is an important one and I plan to share the link with my family members.

[@robertduffin455]

Hello to you all I live in Lincolnshire the UK and have had Parkinson’s for fourteen years The Parkinson’s sand is running slowly I try to hold it up but I know it will win in the future I I am travelling to Tucson in June to see family I enjoy the challenge I don’t have Parkinson’s I have the rest of my life 🇬🇧❤️👍

[@davisphinneyfdn]

Thanks for your comment and your enthusiasm. Keep it up, and let us know if there's anyway we can help!

[@ellagrobler6982]

many thanks for all the info !! That means a lot for me to inderstand what my husband is going threw with his Parkinksons and then is Vascukâr Demencia also there with my husband. So many times I asked why both diseases ???? 💜💜

[@sheilalarsen487]

First time for me to be on or in your group! My husband has Parkinson’s, and I’m encouraged by each of you, sharing and helping us the caretaker to understand your daily struggle from your point of view. Thank you. Sheila

[@davisphinneyfdn]

Thank you for joining us, Sheila. Hope you will again.

[@anthonypcee]

Bordeaux France

[@julieshenk7640]

Thank you. So helpful as a care giver for a husband. Also, valuable for me as I have numerous chronic illnesses.

[@davisphinneyfdn]

You're welcome, Julie.

[@splashesin8]

Excellent gathering today! I know I'm late to catch up but this is fantastic.

[@lindabrock4286]

music and dancing

[@lindabrock4286]

🎉I'm so ùsed to doing things myself. 🎉I have to learn to delegate

[@rezabahadoran8506]

Thanks so much I'm from iran and I have had parkinson since 7 years ago is that right I have heard scientists have made wrest ring that prevents Parkinson shaking

[@lindabrock4286]

I've was diagnosed in 2008 after hurricane katrina.

[@Angelpower1111]

😢I feel so bad that I can’t work and I was just diagnosed. Constantly reminding myself everyone’s PD is different. Mine is a lot of balance issues and I have Mild Cognitive Impairment diagnosed before PD . Also so fatigued. Always been type A but very sad I can’t work.

[@GoProGoalieUzi]

Thx for sharing guys ❤❤PD is so bad. I was diagnosed at 40 in 2018. I am 45 now and take 25 sinimet per day. I exercise every single day and push myself to the max!! I eat protein, chicken, protein powder and other sources. It does effect my on times .. but the benefits are better for me..increasing muscle mass and burning fat. My dyskinesia has gotten worse since I still work and catch shoplifters. 22 years in the business. No quit

[@davisphinneyfdn]

We are glad to hear that your exercise regimen is helping!

[@GoProGoalieUzi]

@@davisphinneyfdn I forgot to mention, I will be going for dbs assessment on the 27th. I will try and upload a video of this on my channel, as well as the dbs surgery ❤️ thank you guys for making a difference!

[@peternorthrop3784]

I've got one: Parkinson's is just an inconvenience.

[@deborahdownie8039]

My husband was just diagnosed last week. I suspected it for a while now but hearing it confirmed is still tough. These conversations are really helpful. Thanks so much for doing this.

[@mariayoung7423]

The show is a great place to learn more about this disses Parkinson and I am going to see what happens with my current situation as I am trying to make the best decision

[@mariayoung7423]

Maria Young

[@davisphinneyfdn]

I'm glad you found us, Deborah, and I am sorry about your husband. We do these every month and hope to see you join us again soon.

[@wandapetrella7449]

I too have to choose a couple things to accomplish

[@angelakindon9839]

We are happy too!

[@robertmedof7844]

How do I get involved with these meetups? I just saw last months on KZbin.

[@rezabahadoran8506]

Hello sir/ma also I have another question when I sneas my brain aches would please tell me why yours sincerely bahadoran reza from iran

[@deecook8230]

Thanks everyone. I appreciate you all sharing your experiences. I found I had Parkinson’s just as I retired. Is Parkinson’s different for older onset?

[@christineallred9130]

I’m also going to have my 2nd DBS in about 3 weeks

[@normanrubenzer]

this is excellent program show, could you please have a discussion reguarding dbs and the duopa pumps to help with a level source of carbidopa to reduce off times. and what are the side effects of both.

[@davisphinneyfdn]

Hi Norman! Thank you for watching. We have a lot of resources on DBS that you can find here: davisphinneyfoundation.org/?s=Deep+Brain+Stimulation We also have an interview about duopa here: davisphinneyfoundation.org/the-benefits-of-duopa-for-people-with-parkinsons/ Finally, we have a LOT of content coming out on DBS in early 2023 to add to our DBS library!

[@HubertEscarpeta]

I say that because I've had the symtoms for a while

[@Michael-he7xn]

Excellent episode ladies and gentlemen! 🙏🏻

[@margaretshero3855]

Thank you for this forum . I so appreciate each one of you and your openness . I am 56 ...dx @50... But have had symptoms Since my mid to late forties. It's so nice to know that you're not on the walk alone. I am not working And have made exercise my job! I want to do something to give back do any of you have suquestions?

[@davisphinneyfdn]

Thanks for joining us, Margaret!

[@lindabrock4286]

it's hard to keepup I've been able to relatè to all the comments .

[@juliet-m31]

This was great! So good to see familiar also new faces! " We didn't study for this test!" Heather, yes!! Every topic on this was so so good! Thanks for being vulnerable and honest. Everyone including Mel. 💔❤️💕🙏🤗

[@christineallred9130]

I’m going to have my2nd DBS soon. Anything I need to expect

[@davisphinneyfdn]

Christine - Here's a great session to watch from people who have recently been through DBS - kzbin.info/www/bejne/nHW6k52GhN17bq8

[@sharonmaplethorpe9168]

I love Kevin - his response to Brian was so touching and genuine ❤

[@SouLightness]

Sree, you mentined some twitter community support. Could you share some link? Thanks . Ireland can be very isolating. Also, how does one become a P Davies F ambassador?

[@ErnestoPerez-wn2ti]

How to join the group? I diagnosed with Parkinson Desease?

[@davisphinneyfdn]

We meet every month. You can register to join us here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/

[@donallen1357]

I just saw this video and today is February 6th, 2024. Do you all still have these Zoom call? If so, let me know when. I'd like to go.

[@davisphinneyfdn]

You can register to attend our ongoing Living with Parkinson's Meetup series here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/

[@8489mary]

I lost my dance career, my ability to write ,speech problems you know all of the problems we endure every bloop day . I,think we should have gotten a cure by now.

[@barbaratraynor6422]

I find that as much as you try to explain how you feel to your family they just don't understand

[@marlenethoney2006]

My family is very understanding and supportive. I guess I'm one of the lucky ones, thanks be to God.

[@HubertEscarpeta]

There was a tremor in my leg I thought it was OK

[@lindabrock4286]

my mate emotionally abandon me 58:17

[@rajgupta3601]

This remind me the story of Tortois/hare ;its better to to slow down and do what you like with own speed

[@8489mary]

I feel so sad to see this even though I have had Parkinson’s for 26 years

[@shelbystokes1059]

I knew I had to quit my job when my boss asked me to consider getting on disability.

[@rajgupta3601]

Now i dont work and pushed myself to retire at age 89, I have worked same maximum security mental health place for 45 yrs ;where i worked since 2075. i had lot of support from worker .they knew my limitation.

[@goodeyes2c]

Why is that doctors take so long to diagnose someone with parkinson's, when it's just a matter of doing the dopamine test? It took 3 years and a spine surgery that I didn't need to finally be told that I have parkinson's 😝

[@timblock3483]

Yeah, no dopamine at all.

[@davidschrumpf3574]

Katie daaenglis

[@rajgupta3601]

How could i get in touch with this group with email/or whats up

[@pennyfuzie8235]

I was diagnosed 2015 I love riding bike, but I was scared of falling and breaking something. I had fell a couple of times. So in February my husband bought me a and adult trike. I try to ride it at least 2 miles each day and it’s really helped a lot with exercising.

[@davisphinneyfdn]

That's so great, Penny. There are many in our community that ride trikes and love them! Happy riding:)