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Geo

Senior member
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Aug 24, 2007
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DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
FOR ANYONE THAT HASNT TRIED IT ,ITS WORTH A TRY . i HEARD OF VITAL STIMULATION THERAPY VITALSTIM.COM 14 TREATMENTS IT HELPED ME BUT THEY WILL ONLY DO 14 TREATMENTS . I DO MINE WHEN EVER I FEEL IM IN DANGER OF CHOKING ,SWALLOWING ISSUES . ONCE YOU DO THE TREATMENTS YOU'LL SEE WHERE THEY PUT THE PADS .DONT PUT THEM ON YOUR CORTID ARTERIES WHICH GO UP THE NECK AND BEHIND THE EARS . I BOUGHT MY OWN MUSCLE STIMULATOR AND SOME TENSIVE GEL . THIS IS SOMETHING TO THINK ABOUT IF YOU WANT TO TAKE CHARGE OF YOUR OWN CARE . DONT EXPECT YOUR DOCTOR TO KNOW OF IT OR ENDORSE IT . THEY DONT WANT TO TAKE REPONSIBILTY . GEO8)
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Now George I hope you're not trying to sell us anything here.

Because you just joined and are promoting unproven therapy. That just makes me plain suspicious.

I've been accused of being rude and a hope basher this week so I won't delete your post but I'd really like to have you contact me so you can convince me of 3 things.
1. Do you really have ALS?
2. I've got friends with back pain that use these but where is the rational for using it for ALS?
3. What are you getting out of this?
Be forewarned. I have one of the best BS detectors in Canada. You will not get off easily.

If I haven't heard from you by Sunday night. Off goes your post and so do you.

Sorry if that's harsh sounding but that's how things are here.
Support ,information and no advertising or crap.
AL.
 
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brooksea

Legendary member
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HM
Al,

Just want you to know how much I appreciate the job you are doing here!

Some people can't handle reality and need tougher skin.

I can't see how a TENS unit would help a PALS since stimulation of a dieing muscle seems counter productive.
 

manfred

Member
Joined
May 15, 2007
Messages
29
Reason
PALS
Country
CA
State
quebec
City
pierrefonds
Machines

Hi al,Yup,you do sound and you may have cause to be skeptic and harsh,no one likes to be led down a "fools" path.I clearly don't see how any machine other than breathing apparatus and feeding tubes can be of any help to this condition...HOWEVER,no one is obliged to, nor should they run out and by one of these machines (there are many advertised as being beneficial..some swear by them)I for one have become a doubting Thomas,I have got to see it to believe it!But desperate people do (or try ) desperate things...a drowning person WILL grasp at the proverbial straw hoping to save him/or herself!We can all research anything that is put to us and then make an informed decision.There are sites that research the effect of massage therapy,diet and exercise have on several diseases,including M.N.D.s Perhaps Geo. was over enthusiastic and should have worded his concept differently(without the mention of brand names)(I am also sure that many patients have already researched these things and come to their own conclusions.).Dealing with this issue evokes emotions that there are no words in any dictionary to describe!So eliminating some one who may very well need a forum like this over a "misconception" could be deemed harsh.Thats not to say you should not talk to him and ease your mind over exactly what his intentions were.Just hope if Geo. is genuine that he didn"t "shoot" himself in the foot.Manfred
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Well you go ahead and call me a skeptic because I just checked and our good friend GEO joined on the 24th posted and hasn't been back. Just seems strange to me that we are getting all these first time posters wanting to tell us about these wonderous gadgets and treatments. Now you've been around for a while and have left some good information before. If you came up with that idea I wouldn't be anywhere near as skeptical. See what I'm trying to get at here?
AL.
 

manfred

Member
Joined
May 15, 2007
Messages
29
Reason
PALS
Country
CA
State
quebec
City
pierrefonds
Geo

Hi Al,I understand where you are comming from and you may be right on this one,just hope that Geo, did not get scared away if he is legit.Who knows ,still a few days until sunday.There is a word in several dictionaries for some one who is not directly or indirectly affected by this nightmare!(and deliberately posts bad or misleading info.)Just can not use it on this site,!Keep up the vigilance,thanks Manfred
 

CindyM

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Learn about ALS
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New England
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Anytown
I thought about deleting this post the minute I saw it because of this line:
DONT EXPECT YOUR DOCTOR TO KNOW OF IT OR ENDORSE IT . THEY DONT WANT TO TAKE REPONSIBILTY .

If a PAL is on a trial drug or trial treatment that has yet to be approved, and tells us about the research he or she is participating in, I am all ears. If a Doc says "this med/treatment is not approved but some patients are getting good results and would you like to take part in the study" I am again all ears. But what exactly does the above statement imply?

We need to think with our heads, not our hearts, when it comes to hopeful treatments. Cindy
 

manfred

Member
Joined
May 15, 2007
Messages
29
Reason
PALS
Country
CA
State
quebec
City
pierrefonds
deleting post

Hi Cindy,I have done a lot of research on this condition,and continue to do so every day for as long as I can before my eyes start to blur.I have read up on a lot of issues,some were promising others were a complete let down,One thing I have come to a conclusion on is,that a lot of doctors , as helpful as they try to be,are not aware of the disease let alone anything out there that might be helpful..some actually know about anti-oxidants ,polyphenols,healthy food products etc. (if I can digest whats on the net,surely they can too )( do not forget I only retain what is positive and comes out of trials and test results from reliable institutes),but for some reason they are not able to or fearful of mentioning them to their patients.Not everything is" cut and dry" and some M.D.s may legitably be worried about giving "false hope",there are others who have directed their patients to some of the sites that refer to some benefits of certain natural products.When my daughter asked her neuro. about using anti-oxidants he had no objection at all,merely stating that they can not do any harm. Unfortunately in todays litigous world a lot of professionals are fearful of recommending certain things for fear of potential law suits.( especially if some of these things are out in "left field"and I am sure some machines fall into that category.I have noticed too that some posts on some of the M.N.D. FORUMS,lead me to believe that some patients are not initially seeing Neurologists(particularly ones with experience in the field of motor neuron degeneration)Geo"s comment may have been out of place as there are mant doctors out there that really are concerned and have just as hard a time dealing with this condition as their patients.Let us wait until Sunday and see if Geo. respondsto Als challenge..Manfred
 

CindyM

Moderator emeritus
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Learn about ALS
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You are right of course, Manfred. I wasn't going to usurp Al. :-D I was just thinking out loud that, since we get so many scams and spam posts, I've gotten jaded enough to be suspect of the following:
  • anybody who posts a link on their first post. Most PALS, CALS and those worried about being one of either, post their concerns, not a way to "help".
  • anybody who trashed their doctor on a first post. Again, most folks are worried, and their first posts speak to this concern for their or a loved one's symptoms. Latrer, when they feel like they know us, is when folks share other things about being a patient.

The spammers are getting more sophisticated. Some start by saying they've been reading for awhile and feel like they know us, then they urge us to try their product that is never related to MND. Just for kicks someday, pay attention to the first time posters and the content fo their messages. Legitimate posters are very worried about some real health crisis in their own lives, and that concern shows. Cindy
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Geo said:
DONT EXPECT YOUR DOCTOR TO KNOW OF IT OR ENDORSE IT . THEY DONT WANT TO TAKE REPONSIBILTY . GEO8)
We all have bashed docs for their attitude and bedside manner or lack thereof. For one time let me offer a rebuttal for "why" they are like that.

My son, the ER Doctor, works about 80 hours a week, has a family which he has to spend some time with, (not much, he has to sleep some time) and absolutely no time for research, such as reading our forum for additional information. He gets no sleep at work, thanks to some of the people who come in for colds and runny noses, etc. Some of the people who have no insurance and have no other place to go for health care.

So I can understand from his perspective why he has an attitude sometimes with patients. The problem is trying to sort out who has a real medical need and spending quality time with that patient. He has discovered some serious illnesses and saved many lives, but had to wade through all the mass of humdrum cases before he gets to one who truly has a need. He probably on average sees 20 people out of 100 who really need help and medical care. You would be surprised how many patients just want narcotics.

So for just this one time, I'll side with the docs, just a little, and try to understand from their perspective.

Neurologists should not have this large a case load and ignore our questions or brush them off as nothing to worry about.

Just a thought. You know I don't like docs in general. :evil:

God Bless
Capt AL
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Im For real Guys Im not a Hokes

For you folks who are not Trusting, im one of you also/ Just go to www.vitalstim.com and watch and read you'll see they use this on parkinsons patients and after having it they have their PEG TUBES REMOVED .But be a sceptic if you will . On this site you'll see they stimulate the muscles of the throat which helps in swallowing .Im new to your forum and no im not a hokes and have nothing to sell .MY difference is im taking charge of my health myself .Ask Yourself if someone found a cure in Mexico and this person was a member of this group would you no longer trust this person because their Doctor didnt prescribe it? I have Psoriasis also and joined a group for that and yes a guy there was selling a book to cure it .I bought it . Alot of our symptoms are not exactly the same . mine rent exactly like yours or someone elses . But 3 Doctors Diagnosed me with PLS out of over 40 Doctors . Im like all of you people ,yes we are prey for all the gimics
only difference im not selling what i have im sharing . One night i woke and couldnt sleep while thinking ,i thaught if i was to come accross a cure would i sell it to someone or would i pick out some friends and share what i have . well i dont have a cure . but im a sharing person which most people find odd because, today noone shares. This Disease has changed my life . Please feel free to eat some crow when you find out im not a phoney . Later Geo
 

manfred

Member
Joined
May 15, 2007
Messages
29
Reason
PALS
Country
CA
State
quebec
City
pierrefonds
hoax?

Hi Cindy,You have a very interesting point!I am not afraid of anything,but Fear took on a new meaning for me when my daughter was first diagnosed with A.L.S.I spent every waking moment on the NET,trying to find something ,anything that could bring some sense of understanding of this nightmare!After much research I came to some of my own conclusions(not everyone agrees with me, but when I see I believe) so for now I have to run with what I have until I find something Better!However I must say that I too was bursting at the seems with my "discoveries"and wanted to tell everyone about them(hoping some one out there had similar opinions and results)But like you said being a newcomer and not having the condition,I took a "step " back and sort of low keyed my opinions,not wanting to hurt anyones feelings,so I just wait for some one to ask for my opinion and then I will divulge what I have found on the NET.Not all people react in the same way,and enthusiasm can sometimes be misread.Lets hope that geo. proves to be the exception to your "rule"...............................................................Hi Al,being in Canada I can fully understand your statements.It really gets crazy here sometimes and it is not always easy for our doctors ,and those that put in these long hours and still keep a smile on their faces and show compassion for those who really are sick deserve to be commended.Manfred
 

Al

Moderator emeritus
Joined
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Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Geo has contacted me by PM. The website talks more about stroke patients being helped. If there is no muscle to stimulate as happens with atrophy then this unit should not work. Geo is real. What I am trying to find out now is he a part of this company? If so then he has ulterior motives for being here. That's my problem plus it is not proven to work with ALS.
AL.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Is This The Pls Support Group ?

Al, Do Me A Favor Check The Difference Between Als And Pls .if You Did Your Homework You Would Find Out To Date No Muscle Atrophy In Pls .we Get Muscle Spasms And Some Get Cramps . But Thats Ok Al Your The Boss Here And That Makes You Feel Good .so Now Everyone Will Not Get Anything Al Doesnt Want You To Have . How About A Deflamation Of Charactor Lawsuit .i Joined Here Hoping To Get Support And Offer What I Had To Help Someone Else But Im Finding Out Thats Not Whats Needed Here . I Will Have To Get In Touch With The Web Master To See What Really Is Going On Here .this Is Just What Someone Who Is Sick Really Needs People To Make You Out To Be Something Your Not .
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Well sir if you did your homework you would find that in PLS not pals. dosent have the same symptoms as ALS ,if it did it would be ALS now wouldnt it .I have PLS and have no muscle atrophy so next time you make a slurred comment check your facts . Next time someone offers you help Remember they problably are scamming you . new people are just spammers and scammers just ask you or Al . You People just Take the Cake ,you claim to want to help us who have a disease . Then call us scammers This cant be a support group i will discourage new patients to come here you dont want us . Geo
 
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