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anyone know anyone with a really bad disease?


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I'm very interested in neurological diseases; Multiple sclerosis, dystonia, Stroke, Transverse Myelitis and all sorts of people with spinal injuries, quads, Paras ect ect.

 

I met my mom's aunt last week who has had Multiple sclerosis most of her life. She rides a scooter, legally blind and needs help doing about everything, yet she is mentally there and actually happy. There is a young girl in the nursing home(she visits and goes to rehab there) who has Transverse Myelitis. She's 22 years old and totally wheelchair bound, uses strap things to use a spoon and all that. She seems happy. Basically Transverse Myelitis is a sudden attack of your spinal cord against itself, causing parallelization within hours or a few days. You can literally go from riding a Mountain bike to being layed out on a bed unable to move forever, within an instant. Scary.

 

I don't know what it is, I see all sorts of **** at the nursing home and these people with neurological problems....I feel strangely close with.

 

Sometimes you feel so guilty walking by them in a trot, because they cannot and some are your age.. One guy there is a year older than me and he's on a flat-board all the time.... his mind is there, his body is not. He can get around in this make shift walker thing, but it's humiliating to him.

 

 

Boy, if I had more nuts, I'd really consider going to be a therapist..... I just don't have enough discipline for it...takes a special kind of person to do it. Even though I do a lot of lifting and helping while I am visiting grandma... I do stupid **** like buzzing around in grandma's new 2,500 dollar tilite ZR wheelchair lol.... I like that thing more than my bike lol

 

Anyone here know people with these effing sucky diseases? Do you have one?

 

Please come out and share.

Edited by OhHey
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whichwayisup

Why not just volunteer your time on weekends or a few days a week? To help those who truly need someone to listen, to help do chores, etc.

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I know a guy 40 years old....Desert Storm vet, recently diagnosed with ALS (Lou Gehrigs Disease) Horrible, insidious disease. Would not wish it on my worst enemy. No cure or effective treatment. Your mind stays sharp while the body slowly wastes away.

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Why not just volunteer your time on weekends or a few days a week? To help those who truly need someone to listen, to help do chores, etc.

 

Ok some people here may think, "Look at EOTW trying to make everyone feel like he's some sort of saint now" I understand why and no blame, but it's not like that. I really do have a interest in the diseases and the people who have them. Have now for about three years and thought this would be a good topic to get out.

 

I do help a little bit, not as much as I would like. I visit my grandmother at the home at least once a week with mom and I help with her plus go around seeing some of the ones I warmed up to. I know two with MS(late stage) and they are in chairs. One likes to tell jokes and sad because she is much to young to be in a home.(early 50's.)

 

She tells me all sorts of stuff about MS and it's effects. She can get anything from prickly feelings in her legs and arms, numbness, leg plasticity where it feels like she is literally dragging weights, double visions and the one she hates the most is Fatigue. Ask any MS person and they'll say Fatigue sucks the worst. She told me you don't even have to do anything and it will strike and you just want to lay down for a day.

 

She is bad now and can barely walk so it's easier to just use the chair. However when she could walk, she told me people thought she was on drugs, because sometimes it looked like she was walking drunk, she'd trip and lose balance, was embarrassing. Also later in the disease....bathroom issues...she has to cath herself(or nurse) several times a day and use a leg bag.

MS simply screws your nerves from the brain to all your functions and makes everything go haywire. They have therapy drugs(injections) that help slow down the progression, but it does not cure or reverse the damage. As of now if you get MS it is a slow(sometimes fast) degeneration of the nervous system until you literally cannot move.

 

These days there are a lot of advances in medicine and the like that help MS people manage the symptoms and pain a lot better than just 5 years ago and they can actually have a pretty good life despite putting up with the stupid MS things that creep up sometimes. Another thing, you can't tell if someone has MS a lot of the time. Although they feel the symptoms, you cannot see it... It's why they call it the "invisible Monster"

 

One girl I talked on YouTube with that has MS said one day her and her friends were at some show and she got a sudden urge to pee real bad and there was a line. She asked to budge ahead stating she has MS. Someone told her "Nice try, not going to work" because she didn't visibly appear to be handicapped.

 

It is stories like that and with my own mental BS, I feel kinda "in tune" with people with these BS diseases..... I get what they have to go through, but in my case I am physically able. I feel hangin with these people, doing what I can for them and just being there, would not only help them, but help me "mentally" from satisfaction, friends and being with people that "get it"

 

I've already started as I previously stated...I registered for a bike ride charity run for MS Society here in May. I can't wait.

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I know a guy 40 years old....Desert Storm vet, recently diagnosed with ALS (Lou Gehrigs Disease) Horrible, insidious disease. Would not wish it on my worst enemy. No cure or effective treatment. Your mind stays sharp while the body slowly wastes away.

 

 

I hear it kills the neurons in the brain and steadily the muscles become less and less effective until parallelization.

 

Yes, that is a bad one..... sorry to hear this.

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My friend has Parkinson's Disease. It has reached a point where he has to use a voice activated computer and walk with a cane. He was an active, vital, vibrant man, amateur kickboxing champion with a job in public relations. He continued the kickboxing until recently because he wanted to motivate other Parkinson's patients. His mind is still active so he becomes frustrated and depressed.

 

It infuriates me when I hear morbidly obese people whining that they have a disease. No, they have a bad habit. They eat too much. You can change a habit, you can't change a disease. My friend can't decide he will stop having Parkinson's tomorrow.

 

OhHey, you should google Montel Williams. He has MS and has been treating himself with diet, exercise, supplements and hormones. He keeps abreast of all the latest research. Maybe something he does might help your relatives.

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my brother has mutiple sclerosis, finally trying the right diet, but tbh once you know it's MS and look for cures, you research and you find out how many fakes will try to con you, which is likely to be the case for others who are very ill...sorry but my eyes were opened wide...lots of love to all people suffering

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my brother has mutiple sclerosis, finally trying the right diet, but tbh once you know it's MS and look for cures, you research and you find out how many fakes will try to con you, which is likely to be the case for others who are very ill...sorry but my eyes were opened wide...lots of love to all people suffering

 

Con them? I don't understand. You mean like promising them results just for the money and it turns out fake?

 

That is some sick shiat if that is what you mean:sick:

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OhHey, you should google Montel Williams. He has MS and has been treating himself with diet, exercise, supplements and hormones. He keeps abreast of all the latest research. Maybe something he does might help your relatives.

 

I watched a lot of his youtube videos as well as others. Youtube is great because they are actual MS people with real stories and experience...it really makes you feel how it really is.

 

I find myself experimenting sometimes to get a feel for what they have to endure. I literally paralyzed myself from the waste down and attempted to do my normal thing like moving around on the couch, getting shoes on ect ect. Of course I didn't really paralyze myself...I merely concentrated to NOT move anything from my waste down. It works and you get a feel of how difficult it is and why Occupational therapy is important.

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One other thing that was the catylast for this post and overall interets in neuro disorders was last year's scare.

 

I had many episodes of "vertigo" where it feels like your head is moving, you get dizzy and feel ill after. Also some tingling in my hands.... Oh and short memory....real short.

 

All signs of MS cognetive problems. SO I went to the doctor and mentioned what was happening and I very hesitantly mentioned MS...lol, he stopped and said "you don't have MS, man with a slight chuckle lmao.

 

Turns out it was more BP bullcrap and stress.

Made me think that people with MS and the like experience that sort of thing all day and night every day 10 fold.

 

If anyone here lurking has MS or a bad neuro disorder..please speak....don't be afraid.

It's a good chance to make even more people aware.

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After reading Christina Symanski's blog tonight....I'm going to try and do more in respect to people who cannot.

 

Since I spend so much of my off time on the intenet doing nothing....I think I will ask if I can do some voluteer work or just do my own thing the way I know best...

That was the final straw(reading that blog). I know the mental benefit(for me) would be great.......

 

Think I'll start by spending a lot mor etime at the home...they always need help lifting and such....

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my wife has m.s. to be exact rr m.s. she has had all the usual problems, then she read about the ccsvi surgery at albany new york medical center, after a while of reading she was all for it, we drove there she had the surgery and it's the best darn thing she ever did, total night and day difference.

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my wife has m.s. to be exact rr m.s. she has had all the usual problems, then she read about the ccsvi surgery at albany new york medical center, after a while of reading she was all for it, we drove there she had the surgery and it's the best darn thing she ever did, total night and day difference.

 

 

That's great.

 

I read about the ccsvi surgery.

 

Remitting Relapse MS is the most common I hear. The shiat you don't want is the progressive type with hardly any remissions. I hear it can quickly turn into progressive type though,\

 

Glad she is doing better....

 

What symptoms did she display? With MS everyone I talk to about it they claim different symptoms from one to the other.

 

Also, what one of the ABC drugs does she take? Do you still have to after the ccsvi surgery?

 

Of course this is if you don't mind telling.

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Feelin Frisky
I hear it kills the neurons in the brain and steadily the muscles become less and less effective until parallelization.

 

Yes, that is a bad one..... sorry to hear this.

 

I don't know if one can just develop ALS as a bad luck draw of genetics but there has been recent discovery that ALS is very often (if not exclusively) found in persons whom have had repeated concussions and head trauma. It was discovered that a toxic protein is produced in the healing process and through age that protein finds it's way into the brain stem and upper spinal cord where it begins destroying the communication between brain and support organs. I think I saw it on Real Sports with Bryant Gumble on HBO a year or two ago and they went back and looked at Lou Gehrig's actual career. Even though he set the record for most consecutive games played which stood until Cal Ripken broke it in the 90's, Gehrig had been beaned--hit in the head--excessively and likely played though concussions that would never be allowed today. Other men afflicted and dying from ALS who were featured in the broadcast were boxers, football players et al. Certainly there must be a genetic predisposition which makes some people more susceptible but the science seemed to say that rough sports or military duty in which the brain can be concussed IS the catalyst for triggering ALS in persons who tend to produce more of the toxic protein than others by way of genetic predisposition.

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I hear it kills the neurons in the brain and steadily the muscles become less and less effective until parallelization.

 

OhHey, please don't take this badly but - it's 'paralysis'.

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I don't know if one can just develop ALS as a bad luck draw of genetics but there has been recent discovery that ALS is very often (if not exclusively) found in persons whom have had repeated concussions and head trauma. It was discovered that a toxic protein is produced in the healing process and through age that protein finds it's way into the brain stem and upper spinal cord where it begins destroying the communication between brain and support organs. I think I saw it on Real Sports with Bryant Gumble on HBO a year or two ago and they went back and looked at Lou Gehrig's actual career. Even though he set the record for most consecutive games played which stood until Cal Ripken broke it in the 90's, Gehrig had been beaned--hit in the head--excessively and likely played though concussions that would never be allowed today. Other men afflicted and dying from ALS who were featured in the broadcast were boxers, football players et al. Certainly there must be a genetic predisposition which makes some people more susceptible but the science seemed to say that rough sports or military duty in which the brain can be concussed IS the catalyst for triggering ALS in persons who tend to produce more of the toxic protein than others by way of genetic predisposition.

 

Interesting, thanks.

 

Mike Tyson better watch out for signs.

 

I haven't searched a lot on ALS yet....just SCI's and Transverse Myelitis(rare) and Multiple scelorsis.

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OhHey, please don't take this badly but - it's 'paralysis'.

 

Why you!:mad::mad: little.......

 

 

Got it......

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