What do you know about Lou Gehrigs Disease?

My mom was diagnosed with Lou Gehrigs Disease a couple of months ago. I really dont know that much about it and when I search it out on the internet there is just too much to read. I am going to see her for the first time in a year. I am a little nervous. I know she is losing feeling in her hands. Dosent walk very well and is in alot of pain. I have talked to her before about smoking marijuana and she was pretty receptive. Right now I have some killer medical marijuana and I would love to be able to bring her some. Anyway, just let me know what you know. Thanks

I have a good friend whose mom had ALS/Lou Gehrig's Disease. I'm so sorry your mom has received that diagnosis. That's not a good disease to have, and it's an awful progression to watch.

Go ahead and try and read up on some of the basics. It's not hopeful, good news, but the second site below has info on clinical trials. The more you know, the better. Especially regarding ALS.
http://www.ninds.nih.gov/disorders/a...lsclerosis.htm
http://www.alsa.org/

Be very careful about giving her cannabis, Geonagual, at least for smoking. My friend Patti learned this the hard way. Her mom was receptive, too, but ALS is a motor-neuron disorder, so it affects the nerves that support the muscles of the body--all of them, inside and out. Patti's mom had muscle/nerve pain and numbness, too, along with weakness. She'd been a smoker of cigarettes a long time before, and so Patti thought smoking cannabis would work for her. Well, it didn't. She didn't have the nerve/muscle strength to cough effectively, and she reacted violently to the two inhalations she was able to take in but couldn't really clear her lungs. The irritation was overwhelming, and it seemed to aggravate her muscle weakness in her chest. If you can, do as much research into cannabis and ALS first, and after that, check with her doctor. It's just not worth it to do something that might cause discomfort. And with ALS, things get progressively worse as it is. My recommendation would be let her doc give her Marinol if he thinks it'd be helpful--or to have her try real cannabis in something edible. Hash tends to work best for medical, edible applications, at least from what I've read. You also need to give consideration to what strain (Indica vs. Sativa) she would be using and what effect that might have.

There are plenty of people who've had good luck with combining cannabis and ALS, and we have three or four members here who use cannabis to treat other types of sclerosis and motor-nerve diseases/dystrophies. Do a Google on "cannabis and ALS" and you'll see some good reports. If it can relieve the depression and help alleviate the salivation/drooling that can be troubling, that's good. But in my friend's particular case, it backfired.

My heart goes out to you and your mom, Geonagual. I'm so sorry.

Man, that is some good information. The weed I have right now is really strong. It is the medicinal marijuana here in California. The high is very, very good on a few hits. I will consider all that you said and read up. Thanks

I will give a report when I get back from Ohio.

Wish I had better stuff for you, but all I got is a mouse study. Interesting, but not conclusive in humans. However, if I had ALS, I'd be toking all I could! But like Bird Girl said, every case is different, so procede with caution. Here's the study's abstract- http://www.alsa.org/research/article...TOKEN=95293857
Granny :stoned:

dude, im sorry
some teacher in an elementary school near me had it, i saw him like 4 years ago last, his als had gotten really bad he couldnt talk. but i saw him in like elementary schools too, he made speeches!

Well, I have been back from Ohio for a couple weeks. It was rough for me to see my mom in the condition she was in. The pain was pretty unbearable for most of the time I was there. I did print out alot of stuff about marijuana and also showed her birdgirls letter about the dangers of smoking it. I also talked to her to talk to her doctor and ask about marinol for her naseau. The doctor has now prescribed it for her and she said that it is helping out a lot.
Overall, she really isn't doing that well. She has lost a ton of weight and also has alot of muscle definition, dexterity in her hands and has fell quite a few times.

Thanks for the update, Geonagual. I'm glad you went to see her and glad you let us know how she's doing. I was going to bump this thread and ask you for the latest if we hadn't seen an update pretty soon.

Does your mom have someone there to help her as the disease progresses? Help her get up from those falls? I hope so.

Watching my friend Patti's mom endure the progression of that disease was like watching a nightmare unfold before our eyes. It must be a thousand times worse for the people who're enduring the disease first-hand. To have a completely cogent mind and yet a body that's deteriorating with each passing day--like I said, a nightmare. Glad the marinol is helping her nausea.

If you're ever interested, an ALS patient named Jenifer Estess wrote a book called Tales From the Bed: A Memoir about her experience with ALS. It's a really good and interesting book. Also a sad one. But at the same time very hopeful. She and her sisters founded an organization called Project ALS to help find a cure. The book may hit too close to home right now, but someday I expect you'd enjoy reading it. I did.

Hi geo...thought I'd post this article about ALS and medical Marijuana for you to read. The tests in animals are very promising.

You might get your mom to try a canna butter it is easy to make and use or a vape. There are so many ALS patients using MM and getting away from the pain medicines. Those pain meds are really hard of the body. There are a lot of ALS support groups online that talk about marijuana use. I hope these help a little.

A review of the scientific literature reveals an absence of clinical trials investigating the use of cannabinoids for ALS treatment. However, recent preclinical findings indicate that cannabinoids can delay ALS progression, lending support to anecdotal reports by patients that cannabinoids may be efficacious in moderating the disease’s development and in alleviating certain ALS-related symptoms such as pain, appetite loss, depression and drooling.[1]
Writing in the March 2004 issue of the journal Amyotrophic Lateral Sclerosis & Other Motor Neuron Disorders, investigators at the California Pacific Medical Center in San Francisco reported that the administration of THC both before and after the onset of ALS symptoms staved disease progression and prolonged survival in animals compared to untreated controls.[2]
Additional trials in animal models of ALS have shown that the administration of other naturally occurring and synthetic cannabinoids can also moderate ALS progression, but not necessarily impact survival.[3-4] One recent study demonstrated that blocking the CB1 cannabinoid receptor did extend life span in an ALS mouse model, suggesting that cannabinoids’ beneficial effects on ALS may be mediated by non-CB1 receptor mechanisms.[5]
Preclinical data has also shown that cannabinoids are neuroprotective against oxidative damage both in vitro[6] and in animals.[7] Cannabinoids’ neuroprotective action may be able to play a role in moderating ALS, which is characterized by excessive glutamate activity in the spinal cord.[8] At least one cannabinoid, delta-9-THC, has been shown to protect cultured mouse spinal neurons against excitotoxicity.[9]
As a result, some experts now recommend that “marijuana … be considered in the pharmacological management of ALS,”[10] and they believe that “further investigation into the usefulness of marijuana and … synthetic cannabinoid receptor agonists is warranted.”[11]

Ride For Life | News Center | Marijuana-like Drugs Help Treatment of Nervous System Diseases

Amyotrophic Lateral Sclerosis (ALS) - NORML

[M]arijuana has now been shown to have strong antioxidative and neuroprotective effects, which may prolong neuronal cell survival. From a pharmacological perspective, marijuana is safe with minimal possibility of overdose. In states where it is legal to do so, marijuana should be considered in the pharmacological management of ALS. ” The article also noted: “[Cannabinoids] will vaporize at a temperature much lower than actual combustion. Heated air can be drawn through marijuana and the active compounds will vaporize, which can then be inhaled … Theoretically, this removes most of the health hazards of smoking.”
— Carter, Gregory T. Rosen, Bill S., “Marijuana in the Management of Amyotrophic Lateral Sclerosis,” American Journal of Hospice and Palliative Care, July/August 2001

The MDA/ ALS Newsletter 8-12 | MDA

Wanted to give an update of my mom's progress. She did end up going to the hospital the other day for her constipation and pain. She now is not walking. She just cant support any weight on her legs, she is too weak. I talked to her on the phone for about a half hour yesterday. It is so crazy, when I talk to her. You cant even tell she is sick. Hospice is now coming 3 times a week. With this latest hospital visit, hospice and her doctor wanted to put her in a nursing home, but she didi not want to go yet. I think she knows it is inevitable.

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Originally Posted by geonagual

Man, that is some good information. The weed I have right now is really strong. It is the medicinal marijuana here in California. The high is very, very good on a few hits. I will consider all that you said and read up. Thanks

I will give a report when I get back from Ohio.

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If Cannabis helps relieve this disease, then make sure you cook it up instead of having the person smoke it.

VERY sorry to hear this! My cousin just passed away from L.G.D. about 2 years back. Best wishes to you and your mother. Your in for a long rode.....don't be afraid to ask for help.

Have a good one!:jointsmile:

I had some family members who suffered from ALS. I'm really sorry this has happened to you and your family. If you dont already maybe you should call her everyday, even if you only talk for a little while. Something as small as that might cheer her up and give her something to look forward to everyday.

Thought I would give a quick update on this thread. Well, my mom definitely has taken a turn for the worse. This disease does work quickly. Hospice was called in about a week ago and my dad was saying that it wont be too much longer. I am glad that she will be out of pain. She is now completely bed ridden, can barely talk and is having a hard time breathing. She does have the no rescitate order in place. There will be no funeral when she passes. Years ago she decided that when she died that she is to give her body to science. It will go to the local university, they will do whatever they do and then cremate the body and bury her in the same cemetary that my grandpa is buried in.

I am doing pretty good. I am very tight with my mom and have always been. We have always communicated well and she is the one person in this world that can read me like a book. I think the fact that I realize that everyone will die eventually gives me a lot of strength.

Hers is progressing very quickly, which in some ways is a mercy. In my friend's mom, it took three agonizing years. I'm real sorry about this, Geonagual. You're in an amazing place of peace about this. Wish I'd been able to be in that place when my sister was on her way out last fall. That's nice you're so tight with your mom. Tell her you love her, OK?

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Originally Posted by birdgirl73

Hers is progressing very quickly, which in some ways is a mercy. In my friend's mom, it took three agonizing years. I'm real sorry about this, Geonagual. You're in an amazing place of peace about this. Wish I'd been able to be in that place when my sister was on her way out last fall. That's nice you're so tight with your mom. Tell her you love her, OK?

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HAHA. Thanks. I always do.

Oh yeah, I ran across your thread about your sister the other day but didnt want to reply and bring it back up.(I was off the boards at that time) I am sorry for your loss. You are a great inspiration to me. I am glad that you are feeling better.

Well, it is time for the conclusion of this thread. M mom did die tonight at 9:15 pm. I have always loved her more than anything. I am glad that she is no longer in pain. Her body has been donated to the university and hopefully her sacriifice can be somebodies gain. Take it easy mom...I love you

Sorry to hear of your loss........best wishes to you and your family! :(

So sorry for your loss, Geonagual. I know you loved your mom very much, and my heart breaks for you. I'm so glad she's out of pain now, though. I'm so glad you visited her recently and got to say goodbye. And I'm so glad you were always so open about your love for her. That ends up being a comfort, I've found, at least knowing they knew how much we loved them.

You're in my thoughts and prayers. Take care of yourself. Much love to you, my friend.