Marijuana in the management of ALS (Lou Gehrig’s Disease) ~ meet Cathy Jordan

Meet Cathy Jordan,  who has found that smoking cannabis is keeping her ALS at bay, and keeping her alive.  You can visit her website & read her testimony here. [Later edit: this site is no longer active. In searching for it, this popped up: Raid Of The Day: Florida Cops Raid Cathy Jordan, Medical Marijuana Activist Who Suffers From Lou Gehrig's Disease

An excerpt:

“I NEVER wanted to tell ALS patients to smoke marijuana as medicine. But, after fighting the drug war for ten years, and having it fall on deaf ears and cold hearts, no pharmaceutical company has made a drug to help. In 1989 I smoked Myakka Gold on the beach in Bradenton. I felt the ALS stop and every day I got stronger. I am sorry to say this form of cannabis has been eradicated by the DEA. I spend every chance I can discussing this with other ALS patients and neurologists to see what other strains of cannabis help them.

In 1989 I began to tell my neurologist that cannabis helped me and he thought I had dementia and that I was not handling my demise very well. I said my disease had stopped and he turned immediately to my husband and suggested he commit me to a mental facility. Needless to say, I stopped talking about the fact that my disease had stopped and continued to smoke cannabis.

In 1994 a doctor at the MDA Clinic at Sarasota Memorial Hospital asked me what I was doing to keep myself alive. I told him and he gave me the best advice ever, which was, “Smoke all the cannabis you can and never tell a soul, because they’ll never believe you.”

In 1996 the new doctor of the MDA told me that my using illegal drugs would make me ineligible for stem cells if they ever found a cure. The very next day I became an activist. On February 22, 1997 I officially came out against the drug war and I am not a criminal . . . just alive!

Now, after seeing over two dozen neurologists and attending many seminars involving cannabis and research of cannabis, I feel quite safe in suggesting that anyone with ALS who chooses to use cannabis do so. Also, I suggest you discuss this with your neurologist even if they don’t want to hear it. I find that I know more about ALS and the use of cannabis than the majority of neurologist I’ve spoken with. Some do not believe any of their patients smoke and I always ask if they have a medical assistant? If they say yes, I ask them to ask their assistant if any of their patients smoke. The answer is always yes and the doctor is always shocked.”

Surviving ALS – Dr. Bob Melamede

The following comes from the abstractMarijuana in the management of amyotrophic lateral sclerosis ” presented by the American Journal of Hospice and Palliative Medicine:

Marijuana has been proposed as treatment for a widening spectrum of medical conditions. Marijuana is a substance with many propertiesthat may be applicable to the management of amyotrophic lateralsclerosis (ALS). These include analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction.

In addition, marijuana has now been shown to have strong antioxidative and neuroprotective effects, which may prolong neuronal cell survival. In areas where it is legal to do so, marijuana should be considered in the pharmacological management of ALS. Further investigation into the usefulness of marijuana in this setting is warranted.

db_Cannabis_curing_room-crop1(Cannabis curing room)

From Science Daily:

ALS wreaks its havoc by harming nerve cells that control muscles. As a consequence of the damage, an estimated 5,000 Americans afflicted annually experience progressive muscle weakness that can hinder movement, speech, even swallowing and breathing.  New treatments for ALS are desperately needed.

“The only FDA approved drug for ALS, riluzole, extends life on average by about two months,” say researchers from California Pacific Medical Center in San Francisco. “Evidence from our study suggests that a marijuana-based therapy could create a much greater effect, perhaps extending life by three years or more.”

In the study, ALS mouse models were given either the marijuana compound THC, the marijuana compound cannabidiol, cannabidiol plus THC, or a placebo daily following the onset of disease signs. The researchers measured disease progression by testing how long the mice could stand on a slowly rotating rod. The more severe their nerve cell degeneration, the less time the mice can balance on the rod. In addition, two conditions of ALS, the loss of movement ability and survival time, were analyzed using a mathematical model.

“We found that treatment with THC delayed disease progression by seven days and extended survival by six days in the mouse model,” says Abood. “This corresponds to three years in human terms.”

Results also indicate that the combination of THC and cannabidiol further delays disease progression. Treatment with cannabidiol alone, however, had no effect.

Cathy in 2012:

Medical Cannabis Helps ALS Patient Outlive her Own Doctors

In April, Cathy Jordan sat on a panel at the Cannabis Therapeutics Conference in Arizona. Before taking the stage, she discussed the medical use of cannabis for ALS with Jahan Marcu, the Philadelphia Medical Marijuana Examiner.

Cathy Jordan first noticed something was wrong in summer of 1985 when she couldn’t pick things up. Her muscles weren’t responding. In 1986, she was diagnosed with ALS (Amyotrophic Lateral Sclerosis). ALS, also known as Lou Gehrig’s disease, is characterized by the death of motor neurons leading to loss of limb control, breathing, swallowing, speech and widespread cellular dysfunction. Most cases of ALS are sporadic; it is not a viral or autoimmune disease.

“Most people start using a feeding tube because they are afraid of choking to death”, says Cathy.

In 1986, she was given 3 – 5 years to live according to her neurologist. Nearly 3 decades later, she is still alive and living with ALS.

“All my docs are retiring or dead. I’ve outlived 5 support groups and 4 neurologists,” said Cathy. This actually posed a problem for Cathy who lost her social security benefits because she lived passed her expiration date. The state of Florida said her ID and regular documentation wasn’t good enough to prove she was alive and to continue to receive benefits. She had to ask her neurologist to fill out paperwork to prove she was still alive.

Mrs. Jordan began using Cannabis from a Florida grower to treat her ALS in the late 80’s. “Donny Clark provided my medicine, grown in the Myakka River Valley…he was busted and sentenced to life in prison, and that strain of Cannabis was lost.”

“You know, they say the fountain of youth is in Florida. Maybe it was something in the soil that made this plant helps me…and I don’t understand why doctors wouldn’t study me. But I still would like to know why this is helping me.”

At first, doctors wouldn’t accept that marijuana could be responsible for Cathy’s extended life span. Other doctors thought that smoking anything would impair her lung function and even threatened to have this paralyzed women committed, simply based on the fact that she thought Cannabis was actually helping her.

“I visited a neurologist at Duke University. When I told him that I was smoking Cannabis, he didn’t know what to do with me. He was afraid. He wouldn’t even take my blood pressure because I was using an illegal drug.”

Cathy adds:

“I asked my docs if they would take a drug if it was neuroprotective, an antioxidant and an anti-inflammatory. They say ‘yes’ and ask me if I know of one. Cannabis, I tell them.”

Nearly three decades later, the science has caught up with this miracle patient. Scientists created a mouse with ALS, which was very exciting for Cathy. Research has shown that THC and other cannabinoids can benefit mice with ALS. The mounting evidence of cannabinoids halting the progression of ALS has started to change the attitudes of doctors and prominent researchers have recently called for ALS clinical trials with Cannabis or cannabinoids.

“They all agree today that I should smoke Cannabis,” says Cathy. “Twenty six years later, my original neurologist fought [successfully] to make sure Cannabis is legal for patients in Delaware.”

Researchers think Cannabis may help ALS patients relieving pain, spasticity, drooling, appetite loss and has minimal drug-drug interactions and toxicity.

“There are ALS patients associations that fight for the right of patients to die with dignity. But what about my right to life?” asks Cathy. “Keeping my medicine illegal removes my right to life.”

~

For more on Cathy, see this article from April 2009 Cannabis Culture Magazine

For more on the role of Cannabis in treatment of ALS, see this page from Marijuana Policy Project

See Also:

Amyotrophic Lateral Sclerosis (ALS) and Cannabis:
http://norml.org/library/item/amyotrophic-lateral-sclerosis-als

Cannabis Relieves Symptoms Of Lou Gehrig’s Disease, Study Says:
http://norml.org/news/2004/04/02/cannabis-relieves-symptoms-of-lou-gehrig-s-disease-study-says

Medical Cannabis Helps ALS Patient Outlive her Own Doctors:
http://www.examiner.com/article/medical-cannabis-helps-als-patient-outlive-her-own-doctors

Cannabis and amyotrophic lateral sclerosis: hypothetical and practical applications, and a call for clinical trials:
http://www.ncbi.nlm.nih.gov/pubmed/20439484

 

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38 thoughts on “Marijuana in the management of ALS (Lou Gehrig’s Disease) ~ meet Cathy Jordan

  1. Thank you very much for sharing this article. It gives us some hope. Our Father was recently diagnosed and is currently battling ALS and it is a HORRIBLE disease that we must now very quickly put all our energy and effort into finding a cure for. I know cannabis isn’t a cure but any way to help or extend his death from the disease is very encouraging.

    We have also started a FaceBook page ourselves and a store in support of ALS and will be making monthly donations to the ALS Society from the store proceeds. Please help us spread the word.

    http://facebook.com/SwensonFamilyStore

    Sincerely,
    The Swenson Family

  2. I just want to congratulate you for speaking out about ALS. I lost my mother New Years Eve day, 1999 from this horrendous disease. She was 57 years old! I wish I could have told her marijuana would help her. Peace, Love and Light.

    Hilleri Fitting

  3. I have als and have had it for 5 years I smoke pot it does help. I can strighten my arms I had not done that in 5 years. My cramps are getting less and less. I am loven life now. ANd your right doctors are stnadish about it. I am strong and living alot better now My father died of it and now I have it well it is what it is.

  4. Hello my name is Nick, and I am interested very much in medical cannabis for my brother who has A.L.S. I need to contact Cathy Jordan to ask specific details about dosage etc. My brother has asthma and is not good with smoke, so I need to know dosage and alternative ways of using it.

    I would really appreciate it if you could help me conatct Cathy

    With best regards
    Nick Mikroudis

    nmik@hol.gr

    ps
    I can also provide my phone number, and would very much like to have my brother speak with Cathy

      • Sorry after sending email for Cathy I got the following error message back. Please advise:

        SMTP error from remote server after RCPT command:
        host mx01.1and1.com[74.208.5.21]:
        550 : invalid address

    • try a vaporizer or put the marijuana in his food. that is what we were advised at the Medical Marijuana clinic two days ago . As to dosage in the food , that I don’t know, but a friend does.
      I’m Maria Bowmer on facebook , send me a message and I’ll get you in touch with my friend who knows all about this.

      Maria

    • if you can take a pound of good bud n make the oil out of it.. watch run from the cure to learn how to make the oil it is simple its just easier to watch the movie.. Dr.dank

  5. I am a caregiver of a 50 year old lady diagnosed with ALS one year ago. I am a nurse and knew very little about the difference between ALS and MS. I have since done research and alot of hands on experience has taught me alot. This disease is rare and there is not a lot of support out there.
    .

  6. My mother was diagnosed with Parkinson’s about 15 years ago. Recently, they recanted their diagnosis and told her she has motor neuron disease/disorder. From my understanding, that is just a blanket term they use for “We don’t know what the hell is wrong with you, so we label you with this”. She is almost completely quadriplegic and can’t do anything for herself. Her neck is bent down at a 90 degree angle and her torso and shoulder muscles are constricted at all times. None of her medication really makes a difference. I am not in the position to acquire enough cannabis to make a decent amount of oil, but I can get small amounts of bud at my own risk, of course). I hope a vaporizer will assist me in administering this medication to her. Hopefully, I can report good findings here after I have the chance to treat her.

    I also have fibromyalgia and anxiety. I have been smoking/consuming marijuana for the past 7+ years and it has been the only relief for me. Prescriptions only brought unwanted side effects WORSE than the condition they are treating. I finally got fed up and a friend introduced me to cannabis.

    Also, I want to make others aware of their 4th amendment rights. Please become informed so you can protect yourself in the instance that police come to harass you about your medication. There is a series on youtube called Flex your rights. Please check this out. It taught me so much in addition to other research I have done on the matter. Don’t let law enforcement push you around just because you choose what goes in your body and for your choice of medication. I find most police are more interested in getting their name in the paper for a drug bust, no matter how small it is, than to protect and serve the citizens. This should be the least of their worries compared to violent crime. Let the docile pot smokers live their lives as they deem fit!

  7. I am a lifetime pot smoker and I am 46. I quit about 3 years ago cold turkey. Within 3 months I started to notice symptoms I had for several years were starting to get worse (spasms, cramps, back and neck pain but I didn’t know I had ALS) . At about 6 months my right hand started losing muscle tone and control. The muscle spasms and cramps were getting noticeably worse. At 9 months of no smoking I decided to start smoking pot again. At the time my Dr. didn’t know it was ALS and thought it was carpal tunnel. I wasn’t diagnosed with ALS until Sept 2011. I haven’t told my neurologist I smoke pot but, I have an evaluation on Monday and I am going to inform him.

    I am taking Rilutek and haven’t noticed any positive effects. On the other hand when I am having strong muscle spasms I can smoke a joint and within minutes my spasms are gone except for a few small spasms.

    I believe I have had ALS for close to 10 years before I was diagnosed. I believe the chronic pot use kept it at bay for all those years. I believe quitting smoking pot cold turkey triggered the fast onset of my disease.

  8. I was diagnosed with ALS 6 weeks ago and started taking Rilutek immediately, however rather than slow the symptoms down as it is supposed to do, my symptoms have progressed since my diagnosis. I am a 55 year old lady with a wonderful family and am determined not to let this disease get the better of me yet. I have decided to try using cannabis as there is nothing else out there that gives any hope. I will follow up with my own findings.

  9. Thank you so much for this feed. My mother was diagnosed with ALS July of this year and she just turned 62 yesterday. This past March, she started to lose her voice. Many doctors misdiagnosed her with Acid Reflux and all others before she made her way to and from many neurologists and tests to be told she has a motor neuron disease. She has been taking Rilutek, but her left side is still weak and she fell last week and broke her hip. Her spirits are strong, and my mother is a very holistic woman. The fact that she is even agreeing to take these medications is pretty big for a stubborn health nut such as herself! I myself, am a daily pot smoker and have been for 6/7 years – suffering from many health issues both physically and mentally, I feel the marijuana helps my body to function as it should. After the research I’ve seen today from both this article and research articles on NORML, I am going to try to get my mom to use a vaporizer as she does not and has never smoked, and I can’t think the smoke would help her. I will also try baking her marijuana food, because there’s nothing I wouldn’t do for her and if this can keep the most beautiful woman I know pain free and around longer, there’s no reason to not.

    Also, if anyone knows of support groups for caregivers and family members other than through the ALS Association, I would be very grateful as I’m having a hard time carrying all this weight. :(

    Thank you, I keep you all in my prayers and please pray she accepts the research and won’t turn me down! :)

    • Cecilia, we are praying for your mother and for you. Have you tried doing a google search for ALS support groups? I bet there are a number of them. Hopefully another commenter here will have an idea for you.

  10. Mitä tahansa etsitkin, löydät sen seksitreffit – yhteisöstä.
    Tämä hauskuus todellakin voi toistua saman naisen, tai sitten
    aina eri partnerin kanssa. Kun haluaa suomalaisia naisia,
    niin täältä niitä saa.

  11. Utroskap er ingen skam, det har eksistert like lenge som selve ideen om monogami.
    Med litt glidemiddel eller olje på hendene kan du gå litt mer grundig til verks i rumpe-opphisselsen.

    Takket være internett har det blitt lettere å lettere og arrangere knulletreff.

  12. me gibt es unzählige Frauen und Männer,
    die sich genau wie Du nach der großen Liebe und nach
    unabdingbarer Treue sehnen. me findest Du kostenlose Kontakte genau
    in Deiner Region – Egal ob in Berlin, Hamburg, München oder
    Köln. Frag einfach nach und entdecke München von einer Seite, die du
    bisher noch nicht kanntest.

  13. Hi my name is Donald. I was told I have ALS in 2010. I haven’t taken any meds as of yet.i want to try marijuana, I’m kinda afraid. Is there a way to eat it without smoking it, and if so, whatare the effects? Im trtrying too do this all naturally I’m 48 and in Ga.

  14. Pot has slowed this disease to a crawl for me. Diagnosed 2 years ago, had symptoms for about 10 years. Riluzol does nothing. I stopped smoking for a few months and the symptoms were coming on strong. Back to smoking about 3 grams a day and my symptoms have slowed down again. Pot also makes me active, no sitting around all day doing nothing. Case in point…. I put up a privacy fence in my yard last week, mostly by myself. Fuck this disease, I’m living life.

  15. I am very excited about the research and the testimonies I am reading on this page. My wife, Susan, was diagnosed with ALS about one year ago. I would appreciate any correspondence that would add to our knowledge of the best way to go about securing the oil, the method of intake and the amount needed to obtain maximum results. May God bless all of us who are willing to get out of the box long enough to explore other options than those recommended by Big Pharm.

  16. familia ALS runs in my wifes family. Her brother was recently diagnosed. He has never smoked before, but we want to try to talk him into trying. Can anyone recommend a good strain for ALS treatement. He currently suffers from muscle spasms and cramps.

  17. Can somebody tell me how much pot a day should a als patient smoke ? in grams? could it be taken by a bong inhalation?

    • I’ve updated the article with a newer video from 2012 – check the end of the article above :)

      “In my stumblings around the web in research of this disease, I ran into a couple of references to marijuana helping in treatment of ALS symptoms. I ran into a series of posts on the Grasscity forum, that besides stimulating appetite, that it may relieve muscle cramps and twitches. Now I hadn’t smoked any weed for at least 30 years, and then only when friends would fire up joints/bongs and pass them around. I was given a joint by a friend to try, so I waited for a day when I was having a twitch storm, and fired it up and smoked it all. About 30 minutes later I noticed that I wasn’t twitching anywhere. Colors got vibrant, and sense of smell/taste was heightened. This was in the evening, which is when I usually have a twitch storm, and I went to bed thoroughly ‘stoned’. I don’t think my legs/feed cramped at all that night, or the next morning.”

      http://www.alsforums.com/forum/general-discussion-about-als-mnd/10660-marinol-dronabinol-even-gasp-marijuana.html

      “Cannabis and amyotrophic lateral sclerosis: hypothetical and practical applications, and a call for clinical trials.
      Carter GT1, Abood ME, Aggarwal SK, Weiss MD.
      Author information
      Abstract

      Significant advances have increased our understanding of the molecular mechanisms of amyotrophic lateral sclerosis (ALS), yet this has not translated into any greatly effective therapies. It appears that a number of abnormal physiological processes occur simultaneously in this devastating disease. Ideally, a multidrug regimen, including glutamate antagonists, antioxidants, a centrally acting anti-inflammatory agent, microglial cell modulators (including tumor necrosis factor alpha [TNF-alpha] inhibitors), an antiapoptotic agent, 1 or more neurotrophic growth factors, and a mitochondrial function-enhancing agent would be required to comprehensively address the known pathophysiology of ALS. Remarkably, cannabis appears to have activity in all of those areas. Preclinical data indicate that cannabis has powerful antioxidative, anti-inflammatory, and neuroprotective effects. In the G93A-SOD1 ALS mouse, this has translated to prolonged neuronal cell survival, delayed onset, and slower progression of the disease. Cannabis also has properties applicable to symptom management of ALS, including analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction. With respect to the treatment of ALS, from both a disease modifying and symptom management viewpoint, clinical trials with cannabis are the next logical step. Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease.”

      http://www.ncbi.nlm.nih.gov/pubmed/20439484

      Marijuana in the management of amyotrophic lateral sclerosis.
      Carter GT1, Rosen BS.
      Author information
      Abstract

      Marijuana has been proposed as treatment for a widening spectrum of medical conditions. Marijuana is a substance with many properties that may be applicable to the management of amyotrophic lateral sclerosis (ALS). These include analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction. In addition, marijuana has now been shown to have strong antioxidative and neuroprotective effects, which may prolong neuronal cell survival. In areas where it is legal to do so, marijuana should be considered in the pharmacological management of ALS. Further investigation into the usefulness of marijuana in this setting is warranted.

      http://www.ncbi.nlm.nih.gov/pubmed/11467101

        • I smoke, vaporize and use edibles, I have a very high tolerance so I usually don’t get nauseous. Tolerance builds up after using a while. Diagnosed 3 years ago, been smoking again since diagnosis because the disease was advancing rapidly. The disease has barely progressed and I am still mobile and self sufficient.

          • I mentioned nausea as one of two conditions that are helped by smoking – nausea isn’t helped by edibles so much as the onset takes too long, and it may be hard to hold it down. Smoke will cure nausea in mere sections.

            The other condition is lung cancer. Dr Donald Taskin postulated that for those with lung cancer, smoking may be a good route of administration since it gets the medicine right to the affected tissue (although edibles/oil should be used in conjunction).

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