just found out

[joeyspfx]

Hi I just found out that i have ALS yesterday. Feeling scared of the unknown. I have 12 and 13 year old boys who depend on me soley. trying to figure out what to tell them. Does anyone have any info on medical marijuana and its effects on slowing down ALS.

 

[tmasters]

Sorry for your situation. The shock you're feeling right now will eventually ease. But I know how you feel.

There's no evidence that marijuana slows down ALS progression. It may help down the road with some of the symptoms such as pain and appetite loss. Alternatively, there are drugs to help with those symptoms, which may be covered by your insurance.

Remember, your teenage sons are going to be watching.

As far as telling them, you just have to do it. At that age they will have lots of questions. You can be gentle but don't try to hide anything. It will backfire on you later.

-Tom

 

[notgivnup]

Joey, so so sorry to hear about your D X. It will take time to to adjust to this new reality. We have all been there, Yes be honest with your children, that is the best advice. Welcome to the family no one wanted to join but we are here for you, to help encourage and support. These are the best people in the world to go to for advice, get info, or just rant an drave for a bit. {{HUGS}}

 

[BeckyW]

So sorry to hear your joining this forum family. Your reaching out for support and info and you will find here. My greatest worry was how this monster would hurt my guys. We've been on this journey three years now. We have made so many memories living life to the fullest. We know how blessed we are to have our family and supportive friends. Becky

 

[Denny]

Joey
sorry about your diagnosis. If your like me it will help you to talk to folks
I'm only a month in from my diagnosis.And I still am going through a range of emotions!
I think it takes some time to deal with this.
I noticed your from SoCal Too.Give your boys lots of love that will give you strength.---Denny

 

[susanf]

Sorry about your diagnosis. Ask your ALS clinic about drug trials. Many of us here have children. I have a 12 year old. Some members have newborns and a few single parents.
It's tough to absorb the news but there are many great people with a wealth of information here.

 

[LizT]

I have read stories where people say the marijuana helps with spasicity among other things. I do not believe it is "proven", but if youre open to it, it might be worth a shot.
Not all marijuana has to be smoked. it can also be eaten, used with a vaporizer, or in pill form.
Sorry about your recent diagnosis. Welcome to our little club.
Best of luck

 

[tammyg]

Welcome to your new branch of family, so sorry you had to find us. As far as your boys; I would wait as long as you can to tell them. At that age they are so insecure. Then tell them less info the better, in my oponion. They are so young and with you being a single parent, they are going to be scared for you, kids don't understand....... And also scared of what is going to happen to them, if something happens to you.
As far as the weed, don't forget the brownies. There is nothing proven about it and ALS. My daughters friends mother has MS, she will be in so much pain and using her wheelchair and depressed. She would score a little something, something and alot of her pain is relieved, and she is able to walk with her cane. It's like it temporary relieves her mussuels so they can move. And always put her in a better mood. I say anything that can help you cope with your DX should be tried. My dad was a cop and wouldn't go for it though.And hell you live in CA. Montel Williams is a positive advocate for it too, and swears it helps him with his disease Good Luck!

 

[Anastasia]

You have found support already by contacting this wonderful site and I cant tell you how much it helped in the many times I /we needed some one to 'bounce' things off....our dear one has recently passed,but I still find comfort in occassionally linking up here,usually when I am feeling the saddest....keep up the good fight and remember to share your feelings as I am sure it helps emotionally.
Re the use of medicinal marijuana,I have no idea,but I am wishing you and your kids well and big love.Anastasia.

 

[hjlindley]

Joey...just remember each case of ALS is different. Mine is hands, then feet (and I thought I was just clumbsy!) but I can still, walk, talk eat drive and it has been 2 years. One day at a time and we are all here for you.

 

[edjohnson]

Consider joining our group dedicated to early access for PALS to some of the 42+ treatments currently in FDA trials.
Here is a link:

https://sites.google.com/site/alstreatusnowpilot1/home

One of our objectives is to encourage Cytokinetics and Dex and others to make treatment available to Trial patients as soon as safety and benefit is visible...Goal is to have early FDA approval...

please email us if you'd like to know more.

[email protected]

 

[Peg B]

Hi,

I did notsee that this is a second opinion. Is it? I was diagnosed with ALS and the Dr. was sure but he also wanted a second opinion. I told my kids I was "diagnosed with ALS, but it was not yet time to worry until we knew for sure." That was 6 years ago, I have MMN not ALS. So while I do not want to give you false hope, I caution you to give it to your kids a bit at a time.

Also though Tom is right (hi Tom) you have to keep them in the loop and tell them the truth. I am also so sorry you have to be here, but you will get good feedback here. God Bless you. Peg

 

[andy leopold]

We were just informed that my wife is in the early stages of ALS, so I (we) are newbies here and I could really use some initial input to the many questions I have. I will only ask one of many tonight in regards to any information and thoughts you guys have about the drug Rilutek that our Dr. has offered .. One question is if she starts on this drug to see what benefits she can gain from it, does that hurt her chances to being able to get into any of the clinical trials that are taking place. Since the drug seems to only give a limited benefit, is it worth trying, especially if it means not being able to enter any of the clinical trials? What kind of results have those who have taken the drug gotten?
Side effects, and it's pros and cons.

 

[momofsixkids60]

Andy, welcome to road less traveled...I'm sure you would turn around if you could; but unfortunately you can't. So let us be your tour guide. To get more responses, you should start a new thread. Go back to do you have section and click on start a new thread...type your title and list your questions. You are going to meet a LOT of nice people along the wayj.

Kimberly

 

[andy leopold]

Thanks Kimberly, I did exactly as you said and hope to get as many responses as possible. It's so hard not to be able to do anything to help the situation, but I am determined to find a way! Thanks for your input!

Andy