Відео

Nice hints. Now ad a broken dominant shoulder from a PD fall and have my situation.

This did make me think of the woman I knew with Parkinson's when I was a little kid and would talk with her about it because I suspected when I was around 10, that it may be why I was shaking, from other adults I knew who were shaky. However this woman was not, shaky, which surprised me when she told me she had parkinson's. I continued to know her and have many conversations with her over the years, mostly about things not Parkinson related. Although sometimes it came up, and she had talked about maybe three times on why at some point when she had been younger, after many discussions with her brother, who was a medical doctor, she had decided to stop with the medication because of the side effects. I had almost forgotten about that, because I hadn't known her in the time she was still on it, and she had expressed shame although understanding about how for a time she became addicted to gambling. She hadn't even known anything about gambling before she found herself in this situation. Thankfully her brother realized what was happening. He wanted her to be as well as she could, but understood her decision, with not only that effect, but others. Also her symptoms were not so much the shaking, but many of the other things people don't see. I knew her, long enough to know when she died and how she was found by elders of the church, which was explained to me, in my thirties. She was sitting straight up reaching into the air with her hand. I am able to understand that now, with the way dystonia effects me, and what happens if I don't randomly hear something go off that brings be back into movement. I have so many talking devices and random neighbor sounds around me, that I suspect that keeps me roused often when I might not be, but I don't know that for sure. The dystonia has progressed more and more since the first weird experience I had with it in 2009. I never knew the word for it, for years and years. I know it's not just charlie horses, or shin splints. It happens in all muscle locations notifying me of places I never would guess there are muscles. I knew many people with Parkinson's but none like her. She told me more practical things without really elaborating much about the hurting part, but that it did wear her out some times where she stayed home and missed us sometimes. She was able to listen to things and accept them in ways that my family just wouldn't just on all the things women and girls go through. She was a single woman living by herself and always helped us girls know that was also an option we could choose. The pressure to get married was very extreme, in both the secular and faith based culture we lived in. This was just what I was thinking of during my first listen to this as I was crashing out from the long errand I had two or three days ago. I am still feeling the effects of that coupled with the weathering outside conditions I couldn't avoid that day. The autonomic things that usually help people in extreme heat and marathon type things, simply don't quite help me like before, no matter how well I prepare and plot my journey to avoid the sun as much as I can. I had to deliver yet another whole boot box of files to another agency to meet a hard deadline in order to survive some more, as I try to regroup still. The person at the agency seemed to grasp why I needed to be sure everything was as thorough as possible to their satisfaction because it would be several days before I could possibly turn up in person again. ...even if I were married and a spouse could drive me over or fill in paper forms for me. It turns out the agency person had, had heat stroke as a child, which effects her to this day. I felt awful that she had to go through this as a child, but so lucky she really could understand the invisible parts of the situation. A lot of times people see my muscles and don't understand how that could be a problem, or I could be very debilitated. This person knows these are not super powers. 😊

“ Study in lemurs that I saw in readers digest!” Kevin 🤣😂🤣

What is brainfog

Older women would be good for the panel

Thank you for this video. Toni Bernhard is a helpful and generous person to many of us in difficult situations.

Just completed a cross country move last october from Texas to California to be closer to family. Packed up 30 years of stuff, way to much stuff, in two months, sold and bought a house. Wish I'd gotten rid of more. Sooo stressful, wishing you the best with your move Heather. Love to you both. BENEDICT CUMBERBATCH

What a great bunch of people! 💖

I grew up on the road mostly. Surprised how long I've been in one place the last half of my life. 😊 Shy, on my report cards. Closet hyperactive after school. 🤣 Third grade teacher years ago at the grocery store, saying to my mom: "Is this the same kid"? I never dreamed I would ever, become so organized. Still, I'm now trying to prepare for another inspection, while having to recover my body from yesterday's sojourn marathon to pick up more bank statements on my way to, the housing authority, the complete opposite direction, to meet the surprise deadline for re-certification, of course on foot and three different fixed route busses. Pushing my chair with my box of files in it, and the book of paperwork with at least sixty of my signatures in it, while holding my long navigational cane in the same hands trying to keep my spokes from being ripped out of my wheels while they're being strapped and unstrapped, to the floor of each bus. I need to maintain my housing choice voucher portability long enough to orchestrate moving everything I will need in order to live out in the field a few hundred miles away, with the mobility gear I find necessary everyday. I will have to build something from the salvaged framework of something else, in my own time, to live in. I will be near family members who will not be able to conceive of me as an autonomous person going and doing stuff I want to or need to, when I need to do it, and having a good understanding of the why, and how, I know, and have learned, what, my own real needs are, and the difference between needs, and wants. I can certainly get lots more done faster, with, the mobility gear, than without it.

I love listening to this friendship. Thank you for letting see a glimpse of what a caring and loving relationship looks like ❤

So entertaining and informative.

What if PD person has Lewy Bodys and severe constipation?

Dear Heather, I've had the pleasure of meeting you in Kyoto after your first question, "When were you diagnosed?" and have been following your journey since. Now 68, 8 years in, an unusual case for my age Left side effected but with most difficult issue bring Dystonia mainly on the right, both feet, mouth and arm, with upper back and Left shoulder pain. About to undergo DBS in a month's time target being StN. My biggest joy in life is music, singing and dance. The fear of being unable to sing foremost, my Neurologist advised that singing uses different neural pathways to speech, but will test it out first while awake and then switch to GPI if the voice is too affected. But then the dystonia is not as well controlled in the STN area as I understand it, so I don't know the best way to go, might as well toss a coin. But your insight has been most helpful and journey appears to have been similar to mine I think. Sifrol gave me huge problems with impulse problems and I got off Amanda Dean because it made me feel nauseous and did nothing else otherwise. medications too difficult to manage now so I have to do something DBS seems to be that something. Thanks for sharing your experiences It's been very helpful. Cheers, Stephen from Australia . Oh you peed yourself, indeed I can relate to that also .. just quietly😂

😊:)

Excellent and helpful presentation.

I am learning so much from you two sparkling ladies.✨🙌❤️😁💪🏼. Thank you for these podcasts. I am newly diagnosed.

Wow! Every word was helpful and hopeful! You spoke to me as the caregiver and to my husband as the patient. Without knowing it, you even described our first-and less than competent-neurologist. Please keep these coming. Thank you for informational and encouraging words.

What about female in 50s with urinary retention, no leaking but waking up 2-3 times at night, slow stream and bladder doesn't feel fully relieved, is this a Parkinson's symptom?

Pretty much everything which largely eats up my time, besides just what all I need to get done. Whatever my body is doing interrupts me continuously. A larger problem to me seems to be a culturally developed set of unrealistic social expectations that are more and more off the rails every day, for just everyone whether they are chronically ill or not. The demands are more than 25 times as much in my estimation

Thank you so much for this -- and I will say, it's not just Parkinson's. I have MS and while I was diagnosed only five years ago, I have had symptoms for nearly thirty years (I'm 52) and almost all of them haven't been motor but cognitive and emotional and other non-motor physical symptoms. It took a motor symptom (a numb leg) after years of other issues and being told it was all in my head to finally get an MS diagnosis. And although I currently have excellent care and medical support from the best in the region, these top-end experts still don't really recognize anything beyond the motor symptoms. So thank you and please keep spreading the word.

Very well done! It's hard to find those words... I know.

I would love to get in touch with Doug Reid of Lafayette. I live in Heritage Todd Creek in Thornton, CO and am just starting a Support Group at the Clubhouse in the Community. I was recently diagnosed with Parkinsons and MS. Thank yo u! Debbie Gardiner

:)

We don't know that it's a preventable disease. The invention of AI we should have all of these diseases already figured out by now! I have to say that it is unbelievably unethical for research companies to go on for decades without finding a solution.

19 years post-diagnosis, this is still so helpful to hear. most of my symptoms are these type--not the usual obvious motor symptoms. this is a very good summary!! THANKS!

My wife has been diagnosed with "parkinsonian" mild cognitive impairment, and after watching this video, I can identify with so many of these symptoms....and is pegging this disease, except the statement that she will NEVER forget who they are, but today, she could not give me her name. This is so confusing because so many of these symptoms fit.... I am determined to nail this disease down as much as possible. Maybe she just has some other form of dementia. Bewildered care giver.

Thank you😊

this is late... but apathy was not really addressed. And not all of us, incl early onset had great jibs, savings, live rich in opportunity. MY PD is isolating me to death.

Falling

lol what I have learned with Parkinson’s I had pd since 2000 I made so may mistakes it isn’t even funny

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Hi my name is victoria Antrillo I have parkinson's.I got diagnosed about a Two years ago When I got dinosaurs , I was fifty to fifty two years old. So this is practically bad news for me. Was nice to hear all of your guys. Opinion on it I think you it helps can't wait to listen to some More.

Do you have less pain on DBS?

Can you talk more about pain and how you handle it. I get such bad pain inmynexk and shoulders that I have to lid down until it recedes makes me lethargic.

Can you talk more about pain and how you handle it. I get such bad pain inmynexk and shoulders that I have to lid down until it recedes makes me lethargic.

A good book for learning how to regulateyournnervoussystem is Unshakeable by Joann Rosen

Stop\ 4:41

I do PVP Speak Out exercises every day ! Great that you mentioned them 🎉

My Dr has taking 2 watt My Dr. has me 2 water pills daily. Since I have been taking water pills My weight has gone from 100 pounds to 115.. Weight seems to higher. I can fit in 2 pairs of jeans.Thougths

Thank you to all the panel members. I look forward to your sessions each month. I'm 'down under' in Maroochydore, Queensland, Australia 🦘🐨🦘

Thank you so much for your time,I wish my support group will catch up with you. I’m trying to restart the group due to covert we disappeared and very slow to bounce back.your support is amazing and helps me to finding my way with Parkinson’s and I hope to help my friends and family to understand.love you guys ,my prayers and thoughts are with you all.Kim Queensland Australia

Hi y'all. I'm slow going today, listening while I made alfredo. I did okay with the Romano, but have lightly parmesan'd half the kitchen floor. Was just really getting into shaking the giant parmesan container, pounding the sides and everything like it was a percussion instrument thinking I'll get it all out of my system breaking this up. The lid was apparently not totally snapped down. Was thinking "what's raining onto my toes?" Oh! -face palm emoji- Yesterday my brain and body were so overwhelmed but I got some stuff tended to before an all too often deadline. This cheese incident happened thankfully after I had let Pest Patrol in earlier today. I usually leave a note not sure I can get up and also be dressed, but he was so slow and patient circling around, today and I have had so many conversations through the door with him, not wanting him to think it's, him, that I pulled on a gown and long tee shirt over it, and managed to open the door and ask if it was still him as I heard him coming downstairs and I pulled off the note and let him in. I think it helped, even though I don't really have an indoor bug situation, to let him see sort of what's behind the curtain, and know I'm not just dissing him, when I ask in the notes to just spray the threshold if I don't manage to make it to the door. We recognize each other vocally. I think from riding fixed bus routes for several years. He usually has a drill sergeant call, but not so loud lately. Could tell was just real curious today.

"I can't afford to get pissed off" about politics. Exactly. I can't afford to get pissed off at anything.

Tom reminded us what a privilege it is to be in service to others.

You are all inspirational! Thank you for sharing! Lots of good ideas! 😀

Great conversation guys - you all covered a lot of ground. Thank you. Go Larry!

Dealing with a sense of loss. Lack of motivation is frustrating. I finished 18 Ironman and trained almost every day. Struggle to find motivation.

Wonderful as always ladies ❤

I agree. Even the best doctors have not explained anything the 6way she has. As we 😊know, the more the patient understands and the family members- the easier it is to deal with. With - no matter what it is -I even thought this about death. The patient and the entire family must work together.

I get overwhelmed often, yet remain here wherever I am with my body here doing whatever unnatural thing it might be doing at the moment. Even though I come up against this wall time and again frequently it takes me awhile to grapple with, and review the last several mortifying situations, and what I found most difficult and how I resolved what felt most, horrifying and also just beyond my control. There's all of that and then just feeling naked, although I do put on clothes to go outside, and conduct business interactions. It's just that being under everyone else's looking glass, while I'm feeling like I'm metamorphising like the Werewolf In London friends. Except I'm by myself most of the time, trying to not, be the Uncanny Valley. I think I had more positive interactions with strangers when my masking, was masked. I didn't enjoy a lot about it but there was that, peculiar relief.