Trying to keep the chin up...

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Re: Trying to keep the chin up...

Postby volfan on June 27th, 2012, 3:31 pm

my old age is what keeps me in the zone of "I get it" when others struggle with whatever. My younger self would have been "wtf is wrong with you, you kook". The other good thing about age is it has made me personally stronger - I am not sure I would have been able to deal with this as well when I was younger. Which is ironic since ALS hits people mainly my age....not those who are in their 40s, 30s, or younger. So go figure.
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Re: Trying to keep the chin up...

Postby wjjw on June 27th, 2012, 4:54 pm

volfan wrote:my old age is what keeps me in the zone of "I get it" when others struggle with whatever. My younger self would have been "wtf is wrong with you, you kook". The other good thing about age is it has made me personally stronger - I am not sure I would have been able to deal with this as well when I was younger. Which is ironic since ALS hits people mainly my age....not those who are in their 40s, 30s, or younger. So go figure.

Believe it or not, I've been trying to "go figure" that for the longest time. And the answer that's been beating me over the head since I was 3 years old is that just as chronological age is not equal to biological age, the SELFs age is not equal to biological age. :idea: Just took a lot of chronological time for me to "get it."

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Trying to keep the chin up...

Postby dARR on June 27th, 2012, 5:47 pm

Hi Greg,
My two cents is that the answers u are looking for are not on this website, they are not in another doctors office but as Raindog has said already they are with your kids and wife and buddies doing things that you guys love. You OWE it to the people who really care about you, who have known and loved you for a long time to get offline, to pull yourself up by the bootstraps and get on living, sharing your life with them. Don't be selfish and self obsessed anymore, you have a benign disorder so its time to move on as hard as it is you just have to do it .Im sure You know people who are REALLY in actuality dealing with cancer or alcoholism, drug addiction, abuse and so on and I bet they don't worry as much as u do about NOTHING. Do you know how many people in this world would LOVE to have a benign dx? you got one...bona fide. so get on with life man...what the hell?.

Dude we have spoken a few times and you are a nice guy. Trust me get off the internet and away from anyone or anything that is associated with twitching als etc get your wife to block this website with a password if it helps same with medhelp and the chatroom anything that has als or twitching info.

Your symptoms WILL bother you, you will probably always have them (like me and a thousand others who have not had one second twitch free in years) that sucks. they are scary and they can get worse. Deal with it. Look at the facts, they aint gonna kill ya, life dealt you a bad hand in the health stakes but that doesnt mean u have to throw away all the enjoyment in your life worrying about a disease you dont have.

Take it easy man,im rooting for you,
Darragh
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: Trying to keep the chin up...

Postby wjjw on June 28th, 2012, 12:13 pm

mwagner wrote:PS: With regards to your comments about therapy - I still stand by the fact that it is really hard to find a good therapist who can truly work with our unique problem. I studied psychology and there's nothing that teaches you how to deal with a phobia/anxiety issue as specific as ours.

Good point. I also think it's hard to find therapists who acknowledge and recognize the full scope and depth of the amazing reality that we exist in, and help us recognize that fact, and make use of it to heal ourselves. This is touched on in a quote by Robert Leicthman, MD (who is also a skilled clairvoyant):

Robert Leichtman, MD wrote:In fact, it is my conviction that psychology will be an incomplete science until it accepts 1) the reality of psychic phenomena surrounding and interacting with each person's personality and environment; 2) the noble influences of the soul; and 3) the fact of reincarnation. All three of these profoundly influence human consciousness. It is essential that behavioral sciences which attempt to help sick people get well recognize all of the forces that contribute to sickness and all of the forces that contribute to wellness.

The psychic component of health anxiety is a huge factor because of the law of attraction (as SecretAgentMan has posted about). If you haven't developed at least a degree of psychic skill yourself, you're often not able to recognize the fear, grief, and panic that you are attracting to yourself--you simply assume that all of it is coming from YOU, since after all it is "in your head." That's often not the case, and makes us wonder why it's so hard to shake!

Anyway Greg, I seriously think you need a change in perspective. You might want to consider reading the book by Anita Moorjani about her NDE. I finally got around to reading it myself. It is well written, and I believe she does an awesome job of describing non-physical dimensions in which we are immersed. What makes her case so rare is the amazing physical proof of her experience--completely curing her body of terminal cancer, while in a coma. Enjoy! And get your mind off of neurology for a while. :)

Anita Moorjani's Book

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Trying to keep the chin up...

Postby wjjw on June 29th, 2012, 12:22 pm

Greg and Mitra, I saw your Qigong comments above. About 10 years ago I just picked up a random DVD that had some exercises that I thought were pretty good. I was trying to locate it but couldn't find it to see who put it out. Anyway, after doing them for a short while, I hooked up with a friend who taught me an ancient set from the Shaolin Temple. According to him, he believed these were much better, and these are the exercises I do today. However, I personally believe that almost ANY of them will work the same way, and what is much more important is what your mind is doing. So, if you can't find someone local are who teaches it, you should easily be able to locate some decent exersise sets online either for free or purchase.

At the most basic level, some of the exercises have you breathing in deeply, imagining that you are breathing in white light or "healing energy," and some have you imagine that as you exhale you are eliminating any negative energy, toxic thoughts or emotions, etc. I recall a similar technique taught by Dr. Normal Shealy that I read a long time ago. You would sit comfortably or lie down, and imagine that you were breathing in and out through your entire body, again visualizing healing energy moving through your body. If you had a particular injury in one part of your body, you would also spend time imagining that you were breathing in and out through that area to heal it. Believe it or not, I just tried this a few days ago. I have a bad shoulder prone to injury and screwed it up about 6 months ago. Don't know if it is arthritis, bursitis, tendonitis, or some other "itis" but it just wouldn't get better this time. I was in pain anytime I tried to lift my arm above chest level. If I slept on that side I woke up in pain. Had this before, but never this long. I was about ready to go to the doctor and request a shot of cortisone to help get rid of the inflammation. And I rarely initiate doctor visits. Anyway, even thought I do Qigong, I never focused on my shoulder, and it wasn't getting better. So a few days ago, literally while sitting in my car on the way into work, I stopped for 10 minutes and did this breathing thing "through" the shoulder. I then went into work and completely forgot about it. The next day suddenly realized that it was 90% better. I had a catch with my son which I was not able to do and slept on it last night with no pain. I've tried this before, but never with this much immediate and dramatic success.

Anyway, the reason I mention this is to stress that it's what you do with your mind, not any particular motion or posture, although they may be designed to facilitate. It may also have to do with intention, and in my case, I had a strong intention to avoid a doctor :)

Key things for any BFS'ers who attempt Qigong, particularly those with health anxiety:

1. It takes no more than 10 to 20 minutes a day, best if done in the AM. During this time, you MUST agree to temporarily suspend any nagging anxiety. Just be determined to let your mind and body relax. If you must, remind yourself that you can resume your worrying when your done.

2. While doing it, you are still going to feel your crappy BFS symptoms. Just ignore them. Not only did I twitch while doing it initially, but when standing in certain positions it would exaggerate things like my left leg having a crappy weaker-than-right leg feeling, and things like that. But do NOT focus on that, just let them be. You are working on your energy body during Qigong, not your physical body, so just let your body do whatever it must.

3. If you don't believe you even have an energy body, at least just try to suspend your disbelief while doing it. Use your imagination. If nothing else you should find it extremely relaxing.

As you guys said, I also can't meditate because it just puts me to sleep. Doing Qiqong, you are standing, breathing and sometimes moving, so I find it easy to be able to relax and focus. Someday when I get free time, maybe I'll do a Youtube video of the sets my friend taught me. But don't hold your breath :)

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Trying to keep the chin up...

Postby mwagner on June 29th, 2012, 2:46 pm

Bill,

Thanks so much for your post. I kept reading about Qigong trying to figure out what it is. I thought it was some sort of Tai Chi? Is it like Tai Chi at all?

Anyway, I found some people while googling for it who teach it in Denver, and might give it a shot soon! It really helps to have an explanation of it, and also to hear that it was so effective.

Also, thanks for your book recommendation. I checked the author out yesterday and am totally, 100% fascinated already. I will be sure to read the book too.

Mitra
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Re: Trying to keep the chin up...

Postby johnnythejet on June 29th, 2012, 9:38 pm

Greg,
I've hesitated to respond to this thread partially b/c initially I didn't really know what to say at this point but also b/c I've had limited access to my computer of late. You know I have been among the harshest on you during your BFS career and, believe it or not, the more I read this post the more I realized how much you've improved...and the more hope I see for you. You have came to the correct conclusion that a man in your situation would "literally insane and off the rocker". You know the ONLY issue at hand is managing your anxiety and thought processes to get your life back....and you will get there for sure. You are a brilliant guy, with ALL related info downloaded to your brain and available for review if needed. You have isolated the problem and are working to find the solution. I have no doubt you will cross the finish line soon, Greg. I hope to be there with 2 beers in hand when you do. :)
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Re: Trying to keep the chin up...

Postby wjjw on June 30th, 2012, 9:04 am

mwagner wrote:I kept reading about Qigong trying to figure out what it is. I thought it was some sort of Tai Chi? Is it like Tai Chi at all?

Mitra--Kung Fu, Tai Chi and Qigong are all related. Kung Fu is the martial art form, and Tai Chi resembles Kung Fu form but the moves are done very slowly, focusing on breathing, "energy" movement, and balance. Qigong is the basis for both and focuses largely on postures and breathing exercises, and meditation (sometimes in motion). Many Qigong sets include motions like Tai Chi, while others you may be standing in a stationary posture, maybe with some hand movement, while focusing on breathing. Here is a link with some references to clinical studies:

http://www.pacificcollege.edu/acupuncture-massage-news/articles/478-strengthen-the-heart-with-qi-gong.html

mwagner wrote:Also, thanks for your book recommendation. I checked the author out yesterday and am totally, 100% fascinated already. I will be sure to read the book too.

Even people like Dr. Wayne Dyer were fascinated by her case. I found out about it when someone on a parapsychology form posted it as an excellent NDE case. I found her description of the non-physical NDE state excellent, and in agreement with what I have learned about it. What also interested me were the references to the origins of illnesses, which is an incredibly complex topic. Of particular interest to me was her claim that in order to love other people you must first love yourself--radiating the overflow to others. Shortly before I was struck with BFS a very wise person told me that it was critical that over the next 10 years I needed to learn to focus some of the love that I direct at my family and children at myself, for the purpose of self healing, otherwise I would end up with chronic health problems. Hmm, not surprising that BFS/PNS is suspected as having autoimmune (body attacking itself) components. Hope you enjoy the book.

Cheers,
Bill
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Re: Trying to keep the chin up...

Postby mwagner on June 30th, 2012, 10:17 am

I needed to learn to focus some of the love that I direct at my family and children at myself, for the purpose of self healing, otherwise I would end up with chronic health problems


Wow. This hit home. I feel like my health in general has gone downhill since I have had children, but blamed it on constant stress of trying to keep up with life including balancing work, a husband, kids, etc.. I am definitely the person who doesn't do all that much for myself anymore and the amount of love I have for my kids is so enormous. Makes sense that I might not be directing much love my own way.

Thanks for the insight, Bill. We have a Tai Chi class at my gym, so I think I'm going to start there, and then investigate Qigong. My friend who tried Qigong said it took all her anxiety away, and I would love to be able to do that, even if it's temporary.

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Re: Trying to keep the chin up...

Postby nicholsan on July 9th, 2012, 1:43 am

Greg,

Just wanted to let you know there is another BFSer with the numbness as well. It happened frequently in the first couple months of my symptoms while sleeping but then seemed to go away. However now it happens when I lean on my arm for too long, sit awkwardly for awhile. etc. It seems so easy to make my muscles fall asleep, feel numb and tingle now which almost never happened before all this started. I've had BFS for about 13 months now and despite all of the uncomfortable and painful symptoms (most similar to yours as I recounted in my first post the other day) my strength remains at 100% (even though it sometimes doesn't feel like it). This is what makes me realize I am lucky as it could be much worse. Good luck to you on the journey.

Andrew
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Re: Trying to keep the chin up...

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