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

Жыл бұрын

Welcome🤗

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

6 ай бұрын

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 blog@dpf.org

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

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

@lindabrock4286

2 ай бұрын

I haven't learned to pace myself .

@lindabrock4286

2 ай бұрын

her experence is so familiar

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

@therealkathleenkiddo

Жыл бұрын

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

Жыл бұрын

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

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

Жыл бұрын

Hi dear sir I appreciate you 🙏🙏🙏

@dorishho3107

Жыл бұрын

7

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

Жыл бұрын

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.

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

Жыл бұрын

😮😮😮

@MrScottCPA

Жыл бұрын

C 11:02 11:02 11:02 11:03 and 😊

@barbarabreen4780

Жыл бұрын

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

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

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

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

Жыл бұрын

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

Жыл бұрын

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

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

4 ай бұрын

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

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

Жыл бұрын

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

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.

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

Жыл бұрын

I am so sorry for your loss, Michael.

@GoProGoalieUzi

Жыл бұрын

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.❤❤

Thank you for this wonderful talk

@davisphinneyfdn

2 ай бұрын

You are welcome. Thanks for watching!

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

@davisphinneyfdn

Жыл бұрын

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

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.

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

5 ай бұрын

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

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

8 ай бұрын

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.

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@

I've was diagnosed in 2008 after hurricane katrina.

music and dancing

Thank you!

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.

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

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.

Thank you - this is very helpful!

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

@davisphinneyfdn

Жыл бұрын

You're welcome, Julie.

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 ???? 💜💜

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

Жыл бұрын

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

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

Жыл бұрын

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

Жыл бұрын

Maria Young

@davisphinneyfdn

Жыл бұрын

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.

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

Жыл бұрын

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

@GoProGoalieUzi

Жыл бұрын

@@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!

Very good session. TY

Very helpful, appreciated the openness of all.

Its wonderful to see and listen to group

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

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!

I too have to choose a couple things to accomplish

We are happy too!

😢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.

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

Bordeaux France

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

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

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

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

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

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

@davisphinneyfdn

Жыл бұрын

Christine - Here's a great session to watch from people who have recently been through DBS - kzread.info/dash/bejne/mHiLxMyJf9uuaLA.html

Excellent episode ladies and gentlemen! 🙏🏻

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

Жыл бұрын

Thanks for joining us, Margaret!

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

Жыл бұрын

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!

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?

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

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

5 ай бұрын

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

@marlenethoney2006

9 күн бұрын

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

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

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. 💔❤️💕🙏🤗

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

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?

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

@davisphinneyfdn

Жыл бұрын

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

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

4 ай бұрын

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

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

my mate emotionally abandon me 58:17

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

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.

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

Katie daaenglis

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 😝

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

Yeah, no dopamine at all.

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

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

Жыл бұрын

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