That is quoting another member of the forum.None of us would choose it, but we can choose how we deal with it. One young lady in the UK has been an inspiration in this respect, and it occurred to me she seems hardly known here
So I'd like to share her with you
The Emma watch
TED talk
The 365 day bucket list blog
A stand up comedian
Business woman
Artist
Emma lawton
Have a happy weekend
Thank you for posting, there is a need for this.
PD has made me thankful - thankful I don't have something worse.
YesA friend my age has just suffered a bad stroke and is paralysed and barely able to communicate 😔
A 68 y.o. neighbor 2 doors down has dementia and his wife just died of cancer 2 days ago. Regrettably, it is not hard to find people worse off.
I tell my hubby he was "lucky" as PD didn't truly present itself until he was 80yo and our neighbor now has PD and is only 60yo.
Emma has more courage than I do.
Great video. Brave woman. Her comedy bit was hilarious. I looked up some more videos. That problem with her neck is not PD. Some other muscle problem. She is an inspiration for sure.
Yes. The neck problem developed a couple of years after her diagnosis and is not caused by the PD. She is pretty amazing. Pity microsoft didn't pursue the Emma watch
Thank you for posting this, Winnie. I did not know her, but she’s an inspiration.
Winnie. I’ve been aware of Emma for many years. I know I can be grumpy at times but you, me and a handful go back a bit now so I hope that I’m ‘amongst friends?!’
I actually find her a ‘presence’ rather than an inspiration. Don’t get me wrong: she seems to be a fine woman and has drive and spirit but at the same time appears to have a bit of a taste for self publicity? I mean, what are all these videos she makes actually for? 😂. It’s like when I was first dxed and I huddled closely to other PWP globally but then it struck me that whilst I felt warmth ( and that’s possibly enough), practically we’d all worsened gradually and would continue to do so. And I’ll say this to the ‘I may have Parkinson’s but it doesn’t have me’ brigade: it bloody well does!
I mean, I’m 8 years in and still front a band as a singer and lead guitarist. We play gigs. I don’t want - or get 😂 - any recognition. It’s just what I do.
Boy, you did get out of bed on the wrong side. Yes she does promote herself, but she's from a marketing career background, and has created a business for herself rather than sit back and feel sorry for herself or just meltdown in panic at getting PD at such a young age.I think we both know that one of the biggest factors in dealing successfully with PD is attitude. MJF is another good example
Keep fronting the band. You are doing better than me in that regard. I haven't yet cracked PD induced performing inconsistency - but I'm determined to do so. Sue and I are working on a 15 song set. We'll get there
New drugs, and then stem cell and gene therapies are queuing up for delivery. Turn over enough stones...
More to the point. What happened to the Emma watch? There was a documentary about it at the time I was diagnosed which is what brought emma lawton into my life. It clearly worked. Why didn't microsoft develop it? Since the Gates foundation support parkinson's research should we petition them to develop it or at least explain why that's not possible
i think i know you enough Jeeves to say yes you csn be 'grumpy' or is it a realist. Don't be so hard on yourself.
I enjoyed watching Emma- so thank you Winnie. I found i found her like me and my attitude. You got to laugh or you'd cry. Every time i get dressed n look in mirror i laugh and say why bother you dress like a five year old. Maybe old age(60) taught me to say who gives a 💩. If i dont care others opinions then great.
I think you have to truely accept stuff and be at peace. I don't regret PD i miss my sons as i live in france but i don't own them they have the right to live their lives.
I often think of Dr C and his wish that we could forget we hv PD and i do. I really can forget it. I hv adapted and accepted and at 8 yrs in i think i doing well and still doing stuff i thought i might not.
I wish you peace calm and acceptance jeeves.
It takes a degree of “grumpiness” to see through a charade. We don’t often agree but on this we do. I’m glad it’s brought others joy but for me she induces a cringe. It’s her coping skill and it works for her. I’m inspired by those who are striving for improving their health (Jimmy Choi for example) not tap dancing on the deck of the sinking ship. I prefer to be at least attempting to construct a life boat.
Emma has my empathy. Jimmy Choi is inspiring IMHO.
optimizeyourself.me/jimmy-c...
I think that’s what I was trying to say. Only you said it better. 😀
I can out grumpy you. It just manifests differently for me. ☺️ “Parkinson’s doesn’t have me!” 🤢 is a coping skill that works for some. Do all you can while you can so it won’t take over bc regret is s hell of a price to pay for denial. And hey, it’s 4:50 am here in the USA. PD has a new buddy, RLS and it fr$&!? sucks. Denial is not how I play. I take solace in being proactive and trying my best though.
How about some videos jeeves, so we can fully appreciate and applaud your effort?
Hi Marc. videos of me playing?
yes
By all means Marc. Despite being English and prone to reserve, I am at the same time a Leo and consequently don’t need much prompting. Thanks for the invitation friend . Enjoy. Ronnie would hopefully approve!
This disease is crazy. My wife can hardly guide her mouse on the computer . Great stuff 📌💜
did that work Casey? It’s all disappeared to me!
my husbands hands don’t work either. Can’t hold his bridge cards any more and bridge was his only hobby😢.
Are your wife’s shoulders very stiff and rigid?
fantastic. I'm not sure you have PD.
see me when I’m off mate!
and if it’s dodgy vocals you’re after , purveyed by a 60 year old who still thinks he’s 23, I’m your Huckleberry 😂
I stepped out of Mississippi when I was ten years old
With a suit cut sharp as a razor and a heart made of gold
I had a guitar hanging just about waist high
And I'm gonna play this thing until the day I die
…Don't you know we're ridin' with the King
👉🏾 B.B King & Eric Clapton
✨🍻✨
🙏😊
Thank you. You made my day. Really good.
fabulous
is this Sutton Coldfield?
it’s a suburb of Birmingham
Not heard you sing before. That's a great voice. Believe me , with the Mrs a pro, and a lot of pro musician friends, we are used to hearing some pretty dodgy cover vocals. And that was not dodgy! Pity I'd not thought before, because Rachels wedding in May is near Stratford upon Avon, and she was looking for a band
I always try to be upbeat but after a night of 3 separate extremely bad night terrors and chronic painful cramps in neck and legs , I know who's the boss and it's definitely PD . It owns my wife and son too who as carers get very little peace or sleep. Don't want to sound negative but it's hard to remain positive while PD has the upper hand.
Maybe it’s been superseded by Cue1?
Funny though Richard. I was just lying here in bed and musing on who really inspired me with my battle (aside from many of the members and posts here on Healthunlocked.). But before I name them, I have to volunteer that NONE of their therapies/processes/beliefs did for me what they did for them. I exercised my little heart out for the first few years and worsened annually:
1. John Pepper. Hell I must have worn out 3 pairs of trainers with this bloody fast walking. I demand that you cover my costs! 😂
2. Nan Little. Big inspiration but again, despite lots and lots of cycling I got worse. When I think about it, Nan and Cleveland should have considered heart rate over RPM. I think this would have made a difference symptomatically.
3. Colin Potter. English guy who reckoned he’d had symptom relief via adopting a semi Keto approach. I gave it two months and realised I never had the gumption to do this in the long term. Colin’s videos were a bit daft at times: he’d sit there, trying to extoll his method and gesticulating with one hand while the other one stayed under the table. What was he trying to hide I wonder? 😂
4. Chris Lacey. The only person that I know personally to have cured himself. Have I the time, gumption, focus to apply myself to intricate woodworking 6 days a week, 9 hours a day? Not when there’s Deep Brain Stimulation about 🤔😵💫
I think as we gain experience of this disease, we learn to filter. And these days, every time I read a post that "this supplement fixes that pathway" I think - chances are 5 years on it will have faded into the sand. A few things stick, and maybe they work and maybe they dont. I have a fairly small "stack"
Emma opened my mind to the idea that you had to come to terms with PD and live in spite of it. And that there was a great deal of interest about PD and research happening, that was likely to make it at least somewhat easier to cope with it. It wasn't going to go away by stressing over it. Nor by obsessively "researching" every google link for in vitro discoveries. My step-son is in New Zealand as a host for the first test match (works for Gullivers travel). Everywhere he goes there is a natural disaster. Wise men book there travel plans on going where Harry isn't. Of course he took cyclone Gabriel with him. And obviously we cared about his welfare. And Sue spent her time worrying, which I understand, but I defy anyone to change the path of a cyclone by worrying
Or Parkinsons disease. Worrying isn't going to do it. Emma gets to enjoy a drink, eat bread or pizzas, and live her life. And spend her days living life to the full, instead of inside obsessing about PD 24/7.
Regarding your inspirations
JP - although I find his boorish and ignorant incessant spamming of other threads tiresome, he drew my attention to exercise (initially fast walking, then just a sufficient exercise program) and I am pretty sure exercise still benefits me
Managed to stay ignorant of Nan!
Colin Potter in truth is what got me back onto Emma, on a "where are they now ?" basis. My other stepson gets married in September, and my daughter in May. I have to give a speech, and I am a hopeless blubber. (So is she - all the photos I have of her at my sons wedding, she has a packet of tissues in her hand). And the first video I saw of Colin's was about how he couldn't cope at his daughters wedding after following the "dark side" of conventional medicine and was transformed by his alternative therapies. Followed by an interview with Sarah King, in which he was pretty unconvincing, and just disregarded the answer she gave to his question about exercise, and substituted his own. He was looking pretty ropey in the last video I can find him in, and he mostly disappeared off the internet - in videos, back in 2018. I did go vegetarian and gluten free and give up alcohol, for a while - and then came back to the light, Emma style, and now enjoy a cheese and ham panini with a "vin chaud" when I ski - like my mates! I am pretty confident of coping at Rachels wedding. I may be playing guitar!
Chris Lacey is on my long list of "probably didn't cure himself. probably mis-diagnosed". I don't mean any disrespect, but you aren't the only one it hasn't worked for. I recall some great advice I got from my boss at the time of my first marriage breaking down, and it not making sense. "Sometimes , things are as they seem".
I hope the DBS goes well. Alan Whone seems a terrific guy, with a terrific team who were another inspiration during the GDNF trials. And this new device looks like the dogs b****cks. Is this part of the trial, or have they completed that now and its mainstream clinical?
Richard. ‘If by the fruits of his labour shall ye know him’, I hope these clips speak for themselves. Scepticism has its place, and I have a degree, masters as well as a PhD in it, but there are times when one has to accept that if it looks like a duck, sounds like a duck etc etc………! 😂. I put these clips on YouTube cause I get fed up wrestling with them vis a vis various media platforms.
youtube.com/shorts/8hVADVsw...
What - I feel - any sceptic have to consider, is that if some guy has been dxed by a top neurologist (Andrew Evans, Uni of Melbourne and gained doctoral thesis in Queens Square London on dopaminergic function), looks like he does in the film, sleeps poorly, is very depressed, lacks energy, has urinary urgency , whose movements are slowed, has no sense of smell and on top of these has to have his wife brush his teeth, dress him and at times even ‘wipe me own arse’ (Chris’s words not mine); then what disease would you diagnose him having had? Even if it was pertinent to challenge Andrew Evans, the choices left (MS, Motor Neurone, MSA, PSP, Huntingtons) are much worse and I sense would take a lot more unpicking than ghastly Parkinson’s. No, take it from me my friend, this guy is the real deal and has achieved a minor miracle.
PS: some great tennis being played between us on this topic I think 🧐
Can't beat a spot of tennis. I don't really know enough about Chris to survive a set. I just find it more exciting when something is replicable, like stem cells hopefully, and Whone's DBS. Do you have a date yet?
Adam. Don't be fooled by the noisy crowd. I think you are swimming against the tide on this one. I've just checked and I have 13 "likes" currently, which is above my batting average, although not a personal best. Sorry to mix my sporting metaphors.
I have just finished rehearsing with my professional soprano , who is not typical of the Prima Donna stereotype. But somehow today I am reminded of that joke about the soprano warm up - "Doh, Reh , Mi, mi mi me me ME ME ME"🤣
😂 Priceless. I’ll remember that one
You confuse ambition , determination and curiosity with stress , worry and obsessiveness. As you have done this for a couple years now without wavering, I think it time to ponder that maybe you are misreading some people.
I find your approach that you whack me with repeatedly to be simplistic and passive. Ironic because you are verbose and aggressive towards me but your approach to this disease, dismissive and passive. Your choice. That works for you.
My way is to channel my entrepreneurial spirit in to taking this head on and refusing to settle for good enough if there is a chance I can have and do the best.
Where you see obsessiveness, others are sometimes actually just extremely curious and passionate. Innovators and Trail Blazers are that way. I aspire to being both.
For me this is obviously a whole new area of inquiry. The learning curve is tremendous. The challenge of becoming knowledgable in neuroscience when two years ago I did not recall what mitochondria meant is a is a meaningful pursuit.
All the successful entrepreneurs and innovators I have known in life and known of have had intense curiosity and are intensely determined and that is why they succeed. And, they find the process enjoyable in a twisted way which most don’t understand. What might worry and stress most people drives others.
I did not find gluttony enjoyable before diagnosis and certainly not after. The “screw it, eat pizza, drink beer, limit your inquiry bc it is stressful” attitude is not the least bit inspiring. It’s depressing. But, it’s Enjoyable for many and waistlines are proof of this. many, myself obviously included, do not find a lifestyle of doing what I know is not in my best interest, enjoyable.
recap of main point: you confuse ambition and determination for obsessiveness (some obsessiveness is good imho, that’s how things get done) You belittle those who don’t want to take a passive approach to their disease. I’ve never responded to your “look at me, I’m drinking beer, now I’m on my tractor, now I’m skiing” posts because they are not interesting or motivating to me. But since you are so he’ll bent on criticizing my approach and me personally, derailing the topic every time, I’ve had it. You do not like my approach and you do not understand it. But you clearly have never considered that I do not like yours either.
I feel sorry for Emma.
Btw being vegetarian was the wrong course for some obvious reasons and the difficulty of it is not one of them.
Because this pertains to so many I’m reminding that as you know, PD is robbing me of my mental strength. I chose to shelf my career ambitions for time to play and for my health. I know many do this. But the ambition and drive one had put towards career is there and is being put towards Parkinson’s.
You won’t read this and I’m not proofreading editing so there it is. You don’t like my approach and are relentless about it. Well, PB, I don’t like yours either.
Little Apple. What’s the negative post to Winnie about? I’m genuinely curious. You refer to him as PB (that’s Pooh Bear right?), but I’ve read the posts and he doesn’t seem to say anything to you. You have every right to express yourself but I just can’t see where your anger came from? 🤔
Two plus years of history. Calling me a yipping chihuahua. Telling me I’m autistic. Over and over telling me I’m obsessed, I’m “confused again.” Etc etc Derailing my posts over and over by making it in to a critique of my personality and not about the PD science. Ex. Facts about sugar and its effect on the brain devolved in to his belittling my “obsessive approach” yet I was scientifically correct on this, not him. Poking fun at what I refer to as “my research.” It’s been relentless and it’s a main reason I have left the forum and created a new account repeatedly. When he realized it was me again, sarcastic response of course.
Why I’m an easy target for him I don’t know but he and some lady named Sharon can be relentless.
He posted this, I bet, in part as a response to a recent exchange in which I am once again, “confused” and should KISS. Keep It Simple Stupid. Ironically, he could not answer the questions being asked and never will.
He does not like my approach. Well then ignore me! Im finally stating that I don’t like his either.
Clearly he has a higher education in science yet he contributes so little of it relative to the “I’m better than you” poking fun at me who does not have a higher education in anything science related.
He was awful to Bolt when Bolt was new. PB eventually apologized to Bolt (sort of). By poking fun at me relentlessly, he is not just hurting me, he is HURTING ALL WHO ARE NEW TO LEARNING THIS AND ARE TRYING TO. I’ve asked him why he can’t take on a role of teacher since he knows so much instead of class bully. That fell on deaf ears.
SUMMARY: Because he has been BELITTLING and DEMEANING towards me for years. It emboldens others to be rude and flippant to those trying so hard to learn brain science and it DISEMPOWERS and DISCOURAGES OTHERS, NOT JUST ME but like me, started knowing very little but joined a forum to LEARN.
I started out passively towards him and kept apologizing for as he says “being confused.” Passive no more. He’s a 🧸💩
Pooh Bear no more, Bear Pooh is a better fit.
sincerely, yipping Chihuahua
okay. I get it. You’re right though about ‘outgrumping’ me 😂
Yep. ☺️. I got my undergrad in Grump now I’m pursuing my PHD in PO. 😂.
I’ve put up with too much crap in life to bring on YOPD, PTSD, SIBO….etc. to continue with putting up with crap from strangers online. I’m here to learn (and vent, since you asked.)
Cheers to a good week. You all will be delighted to know I have a busy workweek and will be scarce. 😂
you’re at the very least entertaining! 😊
scarce you understand, is a relative term 😉
Maybe all you tried did work and you would have been a heck of a lot worse if you hadn’t? Or maybe it didn’t do a damn thing ☺️ and at least you can tell yourself you tried. All that said, follow the science not the personalities and gurus. Heart rate up, neurons firing, etc
Or, like Whiny PB just belittle those trying their damndest, pop a pill and drink a beer. ☺️
I’m venting…RLS sucks far worse than tremor. This is blipping awful. I’m ready to take anything at the moment. Sleep deprivation is bringing out my “personality” 😳. Night night
Btw RTM is stupid. Heart rate, oxygen to the brain, BDNF matter. Not how fast you spin, that’s silly
Love how she shares so openly about her life, truly an inspiration. I also made a bucket list and have been working on it!
I have a collapse list.
She is definitely very brave and doesn’t give up. That inspires me.
But you’re brave Michael and you haven’t given up, nor has Winnie, or MBA, or Little Apple and a hundred others who visit sites like this! Show me a PWP who isn’t battling courageously. They only exist in the ground probably. Some people tell me I’m inspirational. I won’t hear of it. You either ‘get to fighting or get away’ (Wyatt Earp to Ike Clanton at OK Corral for our American listeners) or for we Brits, Colin Campbell to the Highlanders at Balaklava: ‘there is no escape from here men. You must die where you stand.’
Did they hell die. 😑
What do Winnie The Poo and Alexander The Great have in common?
(The same middle name)
ha. 😅
Thanks for your comments! Yes, we must continue on, because we may have Parkinson’s, but we will not let it dictate how we live our lives! No matter how hard it is for me to move stiff limbs, and walk, I’m going to walk, and get through the pain! Attitude is everything! Good luck!
Thanks Winnie. I saw Emmas Ted talk a few years ago and found her refreshing. Its an attitude i aspire to even though i dont always achieve it. I suppose nor does she. I have heard some of the Phineas Davis foundations advocates that they have to time their recordings to their on times. I have to time everything. Being an ex clown help me to laugh at my yo yo brave now coward later attitude. I can be the holly Budha and the three headed hell hound within minutes. I just have to aim to love all parts of me included the ugly.Still i chose to believe.Today it was a tough day. Last week on the other hand my neuro was impressed. My diabetes has reversed to pre diabetic times...yet, i have had clear symptoms for 5 years. God knows where will i be in 8, 10, 12...meanwhile i do all i can to keep me happy, or content or even calm and im grateful for every bit of contact that helps me laugh ors smile or even feel alive. Hugs to all...if youre a hugger that is. If not..🙏✨⭐
Good that your diabetes improved. Hugs to you as well. Find happiness in each day.
Richard, I fully appreciate both positions 'live for today' vs. 'live for the future,' so I strike a balance doing both, but leaning toward conducting myself with the long haul as the primary decider on what I do/ingest on any given day.
So, I have a question. I turn 77 in 3 weeks, am 13 years in and not unhappy with my life. Are you concerned with how you will feel when you're my age?
Good to hear you are "not unhappy." My hubby with PD is 84yo (I'm 70yo). He was very active with fishing, hunting, camping, hiking, boating, canoeing and more. Can still fish a bit. Can walk with walker. Voice is a whisper most of the time. From time-to-time I ask him if he's happy and always replies, "Yes, because I have you." So, I must be doing a good job. He lives for the day, and I'm the one who looks into the future to see how to improve his days and possibly keep the Parkinson's at bay.
My inspiration comes from the posts and support of everyone on HU.
He is lucky to have you.
Sure I'm concerned. I consider myself pretty young onset - diagnosed age 57 , it scared me s**tless. I'll be 20 years in when I turn 77. My Dad was about 80 when he was diagnosed, although with hindsight had it at least 5 years before that, and was stage 3/4 when he died, badly affected by falls and festination.
But on that basis I am determined to do as much living as possible while I'm able to, and balance an active interest in my own health and welfare, with sourcing the best expert neurologist support I can find, and use what's available in terms of medication, exercise, stress management and supplements. But I think I have a bit more respect for the doctors who study for 5 years or more to help people, than some on this forum, who think they know better. And I benefit from that respect.
And keep hoping that before it would otherwise get really tiresome, the tons of research going on at the moment will bear useful fruit. Stem cells, gene therapies, and the likes of IKT-148009 all give me hope
Meantime, Carpe Diem. I woke up to a stinking cold this morning, but still hoping to take Sue skiing tomorrow to build up her knee, and master the ski-mojo.
As for the other path - if it works for you keep doing it. If it's not working, Einstein's definition of stupidity was to keep doing the same thing, and expect a different outcome!
I think of you as a mentor. Your bio page is an excellent guide. I wish you posted more. You were diagnosed 13 years ago but can you identify when your symptoms started? I can’t embrace the present and enjoy it if I know my behaviors are going to make my future worse. I find peace in doing what I know will help my future.
My tremor was obvious to me in '09, altho a nurse said she detected tremor in '06. I was misdiagnosed as having essential tremor in 2010 and correctly diagnosed in 2011.
While I agree we need to find joy in the present, I have found that I appreciate life more as I age. Life is becoming more precious now and I am hoping to not spend my final years miserable. (I'm hoping for a heart attack before I get to stage 5.)
I have had all the pizza and beer a person could want thru out my life and I look at giving it up as a small (tiny actually) price to pay for better health as I age.
“I have had all the pizza and beer a person could want thru out my life and I look at giving it up as a small (tiny actually) price to pay for better health as I age.”
Agreed. Through mindfulness I contemplate what really brings me contentment and it’s not what is generally assumed to. It’s certainly not as simple as pizza and beer!
So you have had a tremor for more like 17 years but spent many years being misdiagnosed.
My father has stage 5. All I can say is I won’t. I refuse. Understanding the extent to which I mean that requires filling in the blanks.
But he did this largely to himself with wine and pizza and other vices.
Thank you for your response. I need to channel my OCD to my work this week. Redirecting is hard! If I’m back on here I’m being naughty as I should be working!
"Youth is the gift of nature, but adulthood is the work of art." (Garson)
good one
Fair play Michael. Keep on fighting eh?
Absolutely! I wish you all the best too.
My still fairly recent introduction to the HU community was also a first opportunity to experience how others live the PD life. Like the disease itself, this turned out to be very diverse. I devoured the many experiences. Among the thousands of opinions, I did wonder how some managed to implement their PD treatment plan. We are already not the fastest people and then ordering all those medicines and supplements, weighing them, dosing them, taking them at the right time. In addition to a labor-intensive diet that includes at least sprouting broccoli seeds, that includes an increasingly extensive exercise training plan, preferably as diverse as possible. Fast walking at least alternates with swimming, boxing, dancing, and strength training. And of course some active spirituality such as Qi gong and/or Yoga should not be missed to add some meaning. That only works if you do it daily in the morning and evening, though. If you still have some time left, then go on HU to see if you can add something to your list. And if not, you can also give others en passant advice or your opinion. In short, more than a day's work. How do you do it! Perhaps it is fortunate that we sleep so little. But what is often the added value? In part I attribute it as an escape from life, one of the many addictions, in that we are no different from the rest of the world population. But perhaps it is also one of the PD pathologies I myself suffer from. Initially the hesitation to start, but once I get going I can't stop either. Most shocking to me are the enthusiastic often dedicated websites of PDers who know how to cope with the disease. Full of interest you follow the enthusiastic blogs, until they suddenly stop. By now I know what that often means. For everyone, that end comes, and unlike what many doctors would have us believe, PD you do die from it, and often a little sooner and nastier than anticipated. The beauty of PD is that you realize there is no time to waste. Enjoy life to the fullest, like Emma ! 🍀
very interesting
You say I tried B1 and doesn't work for me.
What Are the Best Exercises for Parkinson’s Disease?
Vibrating Gloves for Parkinson's Disease
