Hi all, I found this forum back in maybe May or June when we thought my mother had had a stroke. I was looking for info on that.

Just recently, in the last 2 weeks in fact, she finally had her MRI done. It showed no evidence of a stroke. Her Dr sent her to a neurologist. After checking her over & asking questions for about 2 hrs, she diagnosed mom with ALS. She's sending mom to an MDA sponsored clinic for tests & treatment (as I understand it).

So now I'm trying to inform myself & the rest of the family, but don't know where to go other than here. I've found websites w/info about symptoms & treatment, but nothing on some sort of timeline of the progression.

I also live 4 hrs away from them & don't know what I can do other than this. I have a brother & a sister who live close to them, but both are unreliable (to say the least).

I don't think I've slept more than a couple of hrs a night in the last week or so. Things are just racing through my head. From "how do I help from here" to "when do I have the talk with mom" (about later arrangements). Her speech is so slurred now, it's hard to understand her. She's having to repeat herself 3 or 4 times before we can get what she said. I don't know how long she'll even be able to communicate.....i just have so many questions.

Do you all have any ideas on where to go for the information I need or how to help from here? I'm in a position now where I can't just go to see her more than maybe once a month if lucky.

I am so sorry to hear of your mom's diagnoses. My father just recently passed away last June of ALS. He lived with the disease for almost 2 years from his diagnoses. He had symptoms for a about 18 months before his diagnoses was made. Typically, when doctors make the diagnoses patients can live up to to 5 years if they are lucky. Most patients live only about 18 months after diagnoses. There are a ton of websites to go to for information. Here are a few for you to check out.
http://www.alsa.org/ http://www.lougehrigsdisease.net/ http://www.projectals.org/ http://www.mdausa.org/disease/als.html

You mom is going to need a lot of physical as well as emotional support from who ever can give it. I took care of my dad from the day he came home with the bad news, up until the day he died. I pray for you and yur family in this time of need. May I ask how old you mother is? Are the doctors sure she has ALS? Did she have symptoms of ALS before she had the stroke?
If there is anything you need to know or any support you need, this forum is a great place to get it. Again, I will keep you in my prayers.

Thanks for replying.

Mom is 58. When she had her MRI, they said she had not had a stroke, that's when they sent her to the neurologist.

She went in for more tests & they told her it's definitely ALS.

I don't know if she's had symptoms before her speech went or not. This last Spring she seemed to be her usual self, then all of a sudden she couldn't form words. It corresponded to her running out of an anti-depressant. She'd been on a high dose & ran out. When I looked that up, it said withdrawal symptoms can look similar to a stroke, but it never got better, so we (& her Dr) thought she'd actually had one.

They're setting her up with an MDA sponsored clinic & sending her to Dallas for more tests.(We're in OK).

She's started to laugh & cry uncontrollably. She does it on the phone with me. I don't really know how to respond to it so she won't feel bad. If she cries, I just wait, if she laughs, I laugh with her, I don't know what else to do.

She sobs really hard when she thinks about Xmas. It's always been her favorite holiday & she just had to quit her job, so she can't do as much this year. I told her I'd help as much as I can. Maybe I can find some good 2 for sales & we can take that route.

Now I'm just venting, I guess.

There's just so much to take in & sort out all at once now.

Thank you for the links, I'll go look at those!

Sorry to hear about your mom. My dad was just diagnosed too. He has what is called "bulbar onset als" which is what your mom has. Only 25% of als patients start this way. Your mom also has "emotional lability" and my dad has it too. We just went to the als clinic last week. My dad is now on a drug to control his emotional lability. He's really happy about that. Men especially don't like to laugh and cry uncontrollably. It's been really tough for us but we stay positive for my dad. He will be going into a drug trial which is what they will probably do for your mom. It's all so much to take in but you can surf the net and find out so much info. Just keep yourself informed, it's what has kept my sanity I think. Good luck to you and your family.

Hi
Sorry to hear about your dad. I was dx with als this past Feb. I also go to a MDA clinic. I was wondering if you could tell me about the trial you dad is going into.
Thanks http://www.healthboards.com/ubb/wink.gif

My dad is going into a drug trial for TCH346. He sees Dr. Michael Strong in London, Ontario. He's a leading doctor for als, also a scientist. I have had a hard time finding much out about this drug, except that it was developed originally for parkinsons disease. This will be the second phase for the drug to determine dosage and of course my father has a one in five chance of getting a placebo. There will be 500 als patients involved in the study world wide. This drug is by no means a cure, but from what I have been able to find out it slows progression. Hope this info helps.

Is there any way to request being included in that study?

I'm not sure how drug trials work but your doctor that is treating you for ALS should be able to inform you of this drug trial. If he is not personally involved in the trial he should be able to let you know who is. The drug company is Novartis. Maybe they would know how to be involved. This is all so new to us as my dad was just diagnosed recently. It's a long process to be in the drug trial. My dad won't get any drug for 4 months. He goes back to the ALS clinic every 4 weeks and has a physical and blood work. They record this information for the 4 months and then he starts the drug trial. He then must come back regularly for probably the same check up. As I've said before, he also has a one in five chance of getting a placebo. He is able to be on rilutek while in this drug trial. I believe this drug trial is open only to ALS patients that have been recently diagnosed. I'm not sure of the reason for this, but it is still worth checking out.

I'll certainly let Mom know what to ask about & the company name. She was diagnosed in the last few weeks. Are they doing it here in the US or another country?

Sorry, I just noticed you're in Canada. Can I assume that's where they're doing it?

I know that it was mentioned that the trial is worldwide. Europe and Canada were mentioned, but I'm not 100% sure about U.S. It should be tho. Don't get your hopes up too much about your mom and this drug trial. My dad is looking at it as something to help others in the future. There is always the possibility that it could be helpful tho. Good luck to you and your mom.