New to group

[theo1106]

Hello all,

My twin brother was diagnosed the first week in January, 2014. He had just come out of detox for valium and oxycontin. He had involuntary muscle spasms from the first day of his leaving the detox facility. I am still very angry with everyone, but I realize this eventually will pass. I really don't have friends willing to converse with me about this, so I will rely on the good people who care enough to sign up for this forum. We discuss this a lot as a family, but sometimes it feels better to talk with someone not in the family.
We are going to start with the usual meds and marijuana (yes, he has a card) to see if all the good things I have heard and read about are true. I will update this forum on our progress as things change. I feel better already just writing about this.

 

[bigmark1954]

Welcome from another newbie! Please do a follow up on the medical maryjane...I haven't smoked that stuff in 20-25 years, but am willing to try it if it would help me in dealing with this MONSTER>

 

[theo1106]

There is lots of info on ALS and marijuana. I have read that the THC in marijuana will produce fatty acids that help maintain the nervous systems. These fatty acids are not available through pills or injections, only through pot. I am not a doctor, so you must do your own due diligence. Even if what I just stated is not true, it will help alleviate some pain, and will certainly help with your appetite. Look up the videos for Cathy Jordan on youtube. She was diagnosed 22 years ago, and has outlived her doctors.

 

[hjlindley]

ALS Untangled has done an excellent review of cannabis. ALSUntangled.com - Home

 

[Txladybug14]

Hello, I know what you mean about being angry, my mom was just diagnosed after years of seeing drs and surgeries that did nothing she has just been diagnosed! What treatment is your brother receiving? Other than marijuana what medication is he been prescribed? Looking for answers and support.

 

[theo1106]

Hello,

My brother is taking riluzole (Rilutek). This is the only medication approved for ALS, and does not do much for prolonging life, about 2 -3 months . Not sure how they figured that out. It does not mean that you will only live 2 -3 months after you start taking it, as people are in different stages of the disease when they start. ALS is approved for marijuana in our state, but my brother has not started that yet as he has not received his card yet. Hopefully there will be a specific strain that may supply more of the fatty acids I described earlier.

I am still really angry, and I understand what you are going through. I will be happy to offer you any support I can. You can contact me through this thread, which I will update as needed. Remember, pot can be ingested. It does not need to be smoked. I feel this is best treatment possible, and now that pot is being legalized in many states, that means research on pot and people can now go forward. I am convinced that pot can help in many different neurological diseases. His doctor did not hesitate to give him a pot card. When I mentioned it at a family/doctor meeting, some of the relatives in attendance gasped and said 'Oh no. Not that.' Don't let ignorance get in the way of possible beneficial results from pot. It wont cure you, but my hope is a prolongation of life and quality of life.

 

[zoohouse]

While I am not a recreational drug user I do not understand why there is such a hoopla about medicinal marijuana. We use opium derivatives for pain management all the time and it is managed. Although working in ER has shown me how any narcotic can be used illicitly we need to realize that there is another one available that is beneficial without the addictive properties of opiods. Of course I live in BC and it is known for its marijuana, so much so that the RCMP do not bother people who have amounts for personal use only. My husband definitely has a personal bias with it as he had a son that started with marijuana then progressed to crystal meth, thankfully he managed to kick it himself and has been clean for many years. But having said that my husband would be willing to use it if it would help. He does not have a typical ALS with muscle spasm and hyper-reflexia, and said that when he used it for a short time in his youth experienced paranoia. I don't have any experience with it, other than getting some for my dying brother to try and stimulate his appetite, but he too did not like the effects and didn't use it after the first try.
So, I can only say that he has hemp hearts in his diet daily, but there is no THC in those, and hoping that the amazing amount of minerals in it is helping.