Status
Not open for further replies.

Determined

New member
Joined
Apr 16, 2008
Messages
2
Reason
PALS
Diagnosis
07/2006
Country
AU
State
New SouthWales
City
Coffs Harbour
Since the onset of my ALS symptoms in Oct 2005 my condition has declined at a steady rate, first one leg then balance, other leg then the arms, hands, neck, voice etc. Went from cane to walker to scooter, gave up driving, into electric wheelchair.

Traveled the road that all desperate people travel, the overpriced vitamins, minerals, anti oxidents, CQ 10's, special diets etc etc etc. All the things that make the snake - oil salesmen wealthy and do nothing for you except upset your bladder and bowels! Finally went to a holistic doctor who did a full blood work up which showed that I had wasted an awful lot of money! now only take vitamin E & fish oil.

The one blessing was that my breathing and swallowing were still fine, great apatite, love my food, minimal weight loss. February this year disaster, started wakeing up fighting to breath. started chokeing on food. That was a very scary development, one that raised the spector of having to decide whether to go the respirator / peg route or just bow out gracefully. Not at all what I had planned!

How wonderful it is that it is usualy at our darkest hour that Providence steps in? I was looking on the Australian ALS forum, Ozpals and someone was querying Lithium A long term survivor on the site recomended LDN as a safer, more effective option. What the hell is ldn? A quick email gave the answer Low dose Naltrexone, I am aware that it has been derided and pooh hood on this forum but compared to some other things it is cheap has no side effects and in my case restored my breathing, swallowing to normal within two weeKs, Hallelujah !

Cheers, Determined
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Well LDN may have worked for you which is great for you but no clinical trials have shown it to do much for anything other than Chrohn'disease. So until a legitimate research faclity says it works, we'll still pooh pooh it.
AL.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Determined,

If you can say the same thing in a year come back and let us know.

Please understand we get people on here all the time trying this and that, saying how great it is, etc. The sad truth,
THERE IS NO CURE FOR ALS.....PERIOD.

Each of us has to one day arrive at accepting this FACT.

I hate to rain on anyone's parade, but the truth is what we seek here on the forum.

AL and Cindy are our gatekeepers to keep people from taking advantage of the victims of MND/ALS, with suggestions of things that have, "Miracle Cures".

With over 3000 members on an average, many coming each day and many dying, do you not think we have tried EVERYTHING possible to help us and our loved ones? I say US because I too have ALS, Dx May 11, 2006.

Now if it makes you feel good to take Low dose Naltrexone, anti-oxidants, vitamins, stem cells, oregano, pot, coffee grounds, or whatever; I say go ahead and do what you think you need to do. Just don't tell me it is any kind of cure, until it is has been proved in clinical trials at a major ALS research facility.

Please consider, we have heard it all here and are not open to rehashing old remedies that we know have no value. If it works for you, great. Go for it.

I only go into detail about this for the benefit of new members who may read this thread and fall for some so called miracle cure, wasting their time and money.

When there is a cure it will appear on the front page of most newspapers and on the nightly news.
 

rick/Wpg

Distinguished member
Joined
Jan 4, 2008
Messages
149
Reason
Lost a loved one
Diagnosis
02/2008
Country
CA
State
Manitoba
City
Winnipeg
Well said Capt. Al!
I would not have believed how many 'miracle cures' there are till I got diagnosed Feb 1 this year!
Of course the friends and family who recommend them have nothing but good intentions....wanting to help and feeling helpless like all of us....but we all know what road is paved with good intentions!
This disease is so frustrating and frightful...as you have said...no proven cure....and it is sad that there are those who will take advantage of people trying to help their friends and loved ones!
This is what I tell folks now...
If I had a cure for ALS I'd find 1000 people with the disease and give them the 'cure' free....then when it is proven there would be no problem selling it! Man...I'd eat a tablespoon of rat droppings a day if it was PROVEN to stop this disease in its tracks!
Anyhow....not to sound too negative....a friend of my sister who is involved with a food supplement company actually did make a couple months supply of their stuff available to me at no charge...and I am grateful....but this does not make a study...even if I do experience some change or benefit ( which I have not) ...it is not PROVEN
As we all know...the lithium study is the closest thing so far....and it is wayyyyyy small for a study and a long shot at best
I am sure there is something out there that we don't know yet.....and heres hoping for all of us that it gets discovered quick!
Sorry this turned into a bit of a rant :)
Rick
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Oh RIck. Rat droppings? I'd eat 'em too but sincerely hope that wehn a cure comes it will be in a more pleasant package! :-D
 

Sandee

Member
Joined
Feb 20, 2008
Messages
24
Reason
Friend was DX
Country
US
State
Indiana
City
New Castle
Just stopping in to say hi.

And to let all know while I do not post on here I still read and have all of you in my thoughts and prayers daily. My friend Max is struggling abit and I would love to talk about him but I do have an outlet at church to do that thankfully but again just wanted you all to know that you are in my thought and prayers and while I don't interact like I would like to I do as I said remember you all and would ask as well if you would remember me as I am getting ready here soon to do an als walk. It is in Max's name. and honour. .:-D,

Sandee
 

Sandee

Member
Joined
Feb 20, 2008
Messages
24
Reason
Friend was DX
Country
US
State
Indiana
City
New Castle
Als Walk In New York

Max and his wife will be participating in one this Sat. and I am doing one in Sept.

Thank you again to those who have been so ver, very kind to me and have kept in touch. It is appreciated!,

Sandee
 

jimmig

New member
Joined
May 20, 2008
Messages
8
Reason
PALS
Diagnosis
04/2008
Country
ca
State
british columbia
City
shawnigan lake
Max and his wife will be participating in one this Sat. and I am doing one in Sept.

Thank you again to those who have been so ver, very kind to me and have kept in touch. It is appreciated!,

Sandee

I see in something you said about pot. I smoked pot for 3o years. Only recenly stop when i got the diagnosed. Was propably the single hardest thing I have done. now my renewed difficulty is obviously in dealing with my diagnosed. I'v seriously thinking of starting again.
With 3 months of sobrity, I would hate to spoil that streak. I may try a rat poop sliff.
Sorry everyone! as you all know, we need to find humor whereevery we can.
your brother with twiching arms....jimmig
 

jimmig

New member
Joined
May 20, 2008
Messages
8
Reason
PALS
Diagnosis
04/2008
Country
ca
State
british columbia
City
shawnigan lake
Max and his wife will be participating in one this Sat. and I am doing one in Sept.Thank you again to those who have been so ver, very kind to me and have kept in touch. It is appreciated!,Sandee
I see in something you said about pot. I smoked pot for 3o years. Only recenly stop when i got the diagnosed. Was propably the single hardest thing I have done. now my renewed difficulty is obviously in dealing with my diagnosed. I'v seriously thinking of starting again.With 3 months of sobrity, I would hate to spoil that streak. I may try a rat poop sliff.Sorry everyone! as you all know, we need to find humor whereevery we can.****************************************** your brother with twiching arms....jimmig
 

PDaddy

Distinguished member
Joined
Jan 8, 2008
Messages
264
Diagnosis
04/2008
Country
US
State
CA
City
Claremont
Gads, with a crappy disease like this, if I had some pot I'd smoke it!

Your other brother with twitching arms...
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
One of my sisters has been trying to find a disease she might have to qualify her for medical pot use. :-D:-D:-D:-D

So far no luck. LOL
 

PDaddy

Distinguished member
Joined
Jan 8, 2008
Messages
264
Diagnosis
04/2008
Country
US
State
CA
City
Claremont
In fact, I read "somewhere" that pot actually cures ALS and reverses all symptoms. :mrgreen:
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
I used medical marijuana for a couple years before I was vented. It had a three fold purpose.

1. It helped my appetite. I damaged the right frontal lobe of my brain during a fall. This wiped out my sense of smell and consequently, my appetite.

2. I was having trouble sleeping. The marijuana really helped.

3. It virtually eliminated the fasciculations.

I did not want to impair the only part of me that was still working properly (my brain), so I only smoked right before bed. I used a device that extracted the vapor, producing no smoke. The appetite enhancement and fasciculation reduction effects linger for 24 hours.

I thought it was very important not to further compromise my weakened breathing. I therefore used a device called a "Volcano". Essentially it blows hot air from a heat gun (about 350 deg. F) through the medication. The resulting vapor is captured in a plastic oven bag. Also, if you have any control over the cultivation, allow the plant to go 5 or 6 days beyond its peak before harvest. This causes the THC to deteriorate slightly. Better for sleeping.

At the time, I had a doctor recommendation and was completely legal under California state law.




Mike
__________________
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi jimmig, I would say to you what the doctors have said to my mam, when we all asked them, does the drink affect this. Being a born and bread irish woman my mother believes a hot whiskey fixes everything......:) anyway the doctors advice was, the drink will neither make you, or break you! there is no cure for this disease and not a lot to make it easier so if you want a drink have it! So I will say to you Jimmig, if you suffer from this awful disease and it has already got hold, then smoke whatever you want until you heart content, and enjoy......
 
Status
Not open for further replies.
Top