It being the middle of the day when everyone was awake I would without thought struggle and fight with all my might to also stay awake. Places to go, things to do, people to consider, expectations to accommodate, I struggled on. Then one day during an appointment with the neurologist / motion disorder specialist he asked me why I did that and prescribed that I take an afternoon nap everyday. Ridiculous, I thought, far too busy , not a baby or an old man I said and soldiered on. Thankfully sooner or later even a silly old man will start to see reason and during conversations with others my age some with PD but most with out PD , it became clear that many were cheating andnapping in the afternoons, perhaps the majority. They admitted it as if it carried no sign of weakness, no effort to hide it, no excuses, and I was stunned. A nap ? This is what it had come to. I have always been able to force myself onward, do without that pain medication, do without that sleep , ignore the hunger and keep going, keep playing , keep trying. all necessary often to win.
Why do men die at a younger age than women? I noticed that men fill the hospital beds. Past leaders of companies and commerce, sports professionals, ex policemen, men of inner strength arriving at the hospital as a passenger in a vehicle driven by their wife. The women helps the men to tie their shoes and then find them a wheelchair and prepares for a life with out them. These silly old men who have destroyed their own bodies with sports like hockey and football and too much work and stress and no rest with vacations ignored. Silly old men who are trapped in a lifestyle of self-made rules and expectations, unsustainable goals and minimum limits. Silly old men that knew it all , whom nature will now quickly cull and remove and leave behind the truly smart ones. I am a silly old man and my friends now know they are also , too late the realization . Too late to pass the message.
Actually, Gymbag, you always sound pretty smart to me. I have discovered the nap. I work three days a week and I have a cushion in my office - I am the last to leave and I have a 15 minute nap on the floor before leaving. I'm always terrified the cleaner will appear but I intend to claim that I'm doing my back exercises! Seriously, I now find a nap late afternoon means I get to have a longer evening. But it can be no longer than 15 minutes or I'm in a fog.
You are perfectly correct! Stress is a KILLER! But ca we not do something about stress? Can we not take action to get rid if that stress? Why do we have to accept stress as inevitable and ruin our lives by letting that stress ruin our health?
If your job is stressful then work out what part of your job is stressful and deal with that. If you are not able to change the part that is stressful then change the job. That may sound unrealistic but is it really
Working hard and for long hours is not necessarily stressful, if you enjoy yur work.
I am now 81 and still work for up to 16 hours a day, mainly writing emails and reading information on Pd. I am an ordinary man with no particular abilities, other than determination. That I have plenty of.
Talk to somebody about stress management, before accepting it as part of life.
Thanks! It was taken after giving a talk at which I successfully showed a Pd patient, who had been wheelchair-bound, how he could walk normally again. The bird on my shoulder was the pet of another resident of the retirement village in which I gave that talk.
John, we really!! Need a video on your website of you actually working with someone in this aspect; teaching them how to walk. I read it from your book, but would be so much better to actually see this. I walk now, but am thinking of the future. Thank you. You are an inspiration.
Hi Kswood. I would dearly love to put my video out there showing how I teach Pd patients how to walk properly, but I am under a constraint by Penguin Books, who have made a documentary movie of it already and until that movie has been released I am unable to release mine. However, depending where you live, I am starting out on another 2 month talking tour of the USA and Canada on the 22nd August. I will be speaking in NYC, Boston, LA, Honolulu, SF and Portland in the USA and Vancouver, Calgary, Winnipeg, Toronto, Ottawa and Montreal in Canada. You can not only see me doing it but can also experience it yourself, if you are in any of these places.
I am busy training Feldenkrais practitoners how to do what I do and how to follow up what I do with support for a walking program, fr all thse who want to walk their way back to good health.
Thank you for answering. I am in the southern part of the US. Do you know when their book will be released? I will try to purchase it & also watch your website hopefully for a demonstration.
Hi Kswood. I will hopefully be going back to the USA during the 1st half of next year and if you go to my website reverseparkinsons.net you can contact me directly and we can see whether I will be coming close to where you live. I was not talking about a book from Penguin but a documentary movie. I don't yet know when it will be released. My own book is available on my website.
Hi Jo. I will be in Boston 28th August to 31st. Contact art_madore@hotmail.com for full details. I will be in SF 13th September to 18th. Contact Ken Levin klevin1011@comcast.net for details.
Hi mymomhaspd. I am giving talks on a natural chemical produced by the brain to repair itself and showing patients how to use their conscious brain to control ther movements. I have been able to show EVERY SINGLE PATIENT WITH WALKING PROBLEMS HOW TO WALK NORMALLY, without one single patient failing to do so. Yes I do this personally and I don't chare for what I do. I do ask people to help pay for the travelling costs but they are under no obligation to pay anything. Why not come along and see for yourself
I need to bring my mother but right now she is wheel chair bound . Will check and get back . How many hours will she be there and what time ? Sorry for asking so many questions.
Hi Mymomhaspd. Can your mom still stand up on her legs without having to be carried? My talks lasts for 1 hour and the next hour is normally taken up with questions. The 1st hour includes several demonstrations of walking, maybe including your mom. It only takes a couple of minutes to show her how to walk and another cuple of minutes of practice.
My mom is getting to the stage of being wheelchair bound - especially after a recent fall . What are the ways to get out of that , Even bought her the self working bike but she hasn't been able to do much last few weeks and her balance/strength is gone , so is her walking ability,
Also, she does take mucana , and some supplements like omega 3, bit of co-enyme q10 etc . Overall diet isn't too bad..
She is 73 and was diagnosed with PD 10 years ago.
Anyone taking any supplements that are helping or anything that can help please let me know .
Hi Jo. No medication or supplements can alter the progression of Pd, only exercise can do that. But, regardless of age, we cannot expect patients to suddenly start to do meaningful exercise. The question is, would your mother be willing to start doing exercise, if she knew that it could possibly turn the tables on the Pd?
She could start doing as little as 2 or 3 minutes a day, to begin with and then slowly increase it until she is doing one hour a day, 3 times a week.
I don't want to make this sound easy, it is not. Not many healthy people, as they get older, are willing to do meaningful exercise, so don't get your hopes up yet. See if you can encourage her to give it a try!
Look at my website reversepakinsons.net and read all about walking and exercise.
i'd lie to know how you did that, in case i'm wheelchair bound.
Thanks for the comments, I find a nap under 10 minute duration has no effect. While a nap over 45 minutes is probably not necessary and can result in that fog Stevie3 is talking about.
I can't understand why there is so much guilt associated with napping... I've been a napper for many years... Sunday is a great day for a wonderful nap... Saturday is good too... and I've recently read that napping increases ones memory recall and memory retention as well.
So I say nap on .... and feel good about it !
Sounds simple right? just take a nap. OK but a couple of old friends are here and we are having a beer and a swim and later dinner and I realize that I can not keep my eyes open. I excuse myself and disappear for 30 minutes. Now if you are the old friend what would you do. Leave? Well , it had been well discussed before and they knew what to expect and waited for me to come back and they drank all the cold beer and ate all those deviled eggs that I like.
That's what friends do they eat you out of house and home lol...I have to take a nap I don't sleep well at night some from Parkinsons, most from arthritis which keeps me aching and paining...ugh!!! but my family nows I get up piddle around the kitchen maybe crochet some then nap a bit but mine are adventures lol I sometimes wake up 2 hours later but I might have only gotten 4-5 hrs sleep...
I am 80 y.o. retired physician and used to work 60 to 80 hours a week but i always took time out at noon to nap for 15 to 30 minutes every day, I felt recharged. Now that I have fatigue syndrome with pd I have to nap between 30 and 45 minutes every day around 3 pm otherwise i am worthless for the rest of the day is wasted. I realize long time ago that naps are necessary and not worthless, do it and feel recharged
I have not been able to sleep much more than 5 hours a night since 1974. My Pd symptoms started in 1963, but I did not know I had Pd until 1992. I would love to be able to take a nap every day but I always seem to have too much to do. I go to sleep immediately every night but cannot get back to sleep after I have woken up, no matter what time of night it is.
If I am able to pick up a book during the daytime I invariably fall asleep within minutes but that ruins my nighttime sleep, so that isn't any good. I just have to accept that as my lot in life!
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