http://www.alsforums.com/forum/ ALSforums is a support group community that provides answers, tips, friendship, care and support to people affected by ALS, MND and PLS. en Fri, 03 Sep 2010 05:15:58 GMT vBulletin 60 http://www.alsforums.com/forum/images/misc/rss.jpg http://www.alsforums.com/forum/ http://www.alsforums.com/forum/general-discussion-about-als-mnd/13041-making-friends.html Fri, 03 Sep 2010 02:05:28 GMT Just curious- how is it that all of you PALS made the decision to become friends with other PALS? To me it seems obvious. But just the other day, I... Just curious- how is it that all of you PALS made the decision to become friends with other PALS? To me it seems obvious. But just the other day, I was telling Ray about this place and asked him if he wanted to get in touch with anyone else who has the disease. He didnt even have to think about it. It was a quick and clear "No"

Maybe he is afraid of losing people? What do you think? ]]> General Discussion About ALS/MND LizT http://www.alsforums.com/forum/general-discussion-about-als-mnd/13041-making-friends.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/13040-rapid-fvc-decline.html Thu, 02 Sep 2010 22:00:13 GMT My clinic FVC scores were above 90 in March, 70 something in June, and below 50 just the other day. Does this seem an overly fast decline. Freaking... My clinic FVC scores were above 90 in March, 70 something in June, and below 50 just the other day. Does this seem an overly fast decline. Freaking out. ]]> General Discussion About ALS/MND bythesea http://www.alsforums.com/forum/general-discussion-about-als-mnd/13040-rapid-fvc-decline.html http://www.alsforums.com/forum/als-caregiver-support/13039-question-suggestions.html Thu, 02 Sep 2010 21:15:37 GMT Hi it's been a while since I have posted here but I guess up until now things have been the same. I am caegiver to my mother who has ALS and since diagnosed over a year ago my father has retired and for help they have moved in with me and my family :)
So everything was still goin the same until now...aa few months ago her vc was below 40 percent. We have not since got another reading. She chose not to vent or use feeding tubes. She is completely confined to a power chair. Can still talk with a slur but barely audible. (altho we can understand her no one else can) She eats soft foods still. But this past week she has been having a way harder time supporting her neck. She cries in pain and we have to put a neck brace on her. She also has a bad pain in the right side chest that she says shoots right through her back? And she chokes 10x worse than usual. She has asthma and it seems we give her spray more than we ever have. Today she informed us that she feels weak and like her body seems to be giving out whatever is left of her. She thinks her "time" is drawing to an end. her suggestion is that we contact hispice to monitor her and give her morphine for her pain. What do we do? Obviously she is weaker possibly dying I dont know. If you have been through these stages please message me. We dont know what to do at this point. I know she is tired but do we confine her to her bed until she dies? Im sad and confused, I have always thought to be prepared for this but I feel a bit overwhelmed. I cannot imagine how she must feel, although i wouldnt know it cause she is a tough cookie :) Please any help is appreciated...:? ]]> ALS Caregiver Support myheart2yours http://www.alsforums.com/forum/als-caregiver-support/13039-question-suggestions.html http://www.alsforums.com/forum/people-als-pals/13038-help-coming.html Thu, 02 Sep 2010 16:24:41 GMT But when they tell you palliative care is going to start coming in and the nurse refers to it as the association that helps people at the end of... But when they tell you palliative care is going to start coming in and the nurse refers to it as the association that helps people at the end of their lives, it feels really really not very nice at all. ]]> irismarie http://www.alsforums.com/forum/people-als-pals/13038-help-coming.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/13037-question-about-breathing-test-score.html Thu, 02 Sep 2010 14:02:43 GMT My mom FINALLY went to her ALS specialist yesterday (she was refusing to go for awhile). I apologize in advance because I don't have much information, but I was hoping someone could help me out.

She needed a feeding tube probably a month or two ago. They did the breathing test on her and her score was 36, apparently 50 is what is needed to make the feeding tube procedure easier.

can someone explain to me what the score means in terms of her actual breathing? And maybe help me understand how the insertion of the feeding tube will work? THank you. ]]> General Discussion About ALS/MND lisaohgee http://www.alsforums.com/forum/general-discussion-about-als-mnd/13037-question-about-breathing-test-score.html http://www.alsforums.com/forum/people-als-pals/13036-prof-hawkings-disability-advice-web-site.html Thu, 02 Sep 2010 11:02:08 GMT Stephen W. Hawking - Disability Advice (http://www.hawking.org.uk/index.php/disability/disabilityadvice) simpley such an outstanding man:grin: Stephen W. Hawking - Disability Advice

simpley such an outstanding man:grin: ]]> olly http://www.alsforums.com/forum/people-als-pals/13036-prof-hawkings-disability-advice-web-site.html http://www.alsforums.com/forum/do-i-have-als-als/13035-paralyzing-electric-shock.html Thu, 02 Sep 2010 04:44:11 GMT I was in a car accident 30 years ago and suffered whiplash. I've had pain and difficulty holding my head up periodically ever since. I currently have a dual dx of ALS and Lyme and am on iv ceftriaxone.

Yesterday I tripped and a massive electric shock of pain paralyzed me from the neck down. I barely kept my balance.

Is this the ALS or Lyme degrading an already weak area of my spine? My MRI showed no abnormalities a few months ago. Should I see a neurosurgeon? ]]> Do I Have ALS? Is This ALS? NotALS! http://www.alsforums.com/forum/do-i-have-als-als/13035-paralyzing-electric-shock.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/13034-vent-not-vent-question.html Thu, 02 Sep 2010 00:07:58 GMT Im assuming that Joel is the only one on here that is on a vent. Im just wondering how everyone feels on that subject. Do you plan on going for it,... Im assuming that Joel is the only one on here that is on a vent.
Im just wondering how everyone feels on that subject.
Do you plan on going for it, or not? ]]> General Discussion About ALS/MND LizT http://www.alsforums.com/forum/general-discussion-about-als-mnd/13034-vent-not-vent-question.html http://www.alsforums.com/forum/do-i-have-als-als/13033-update-my-mri.html Wed, 01 Sep 2010 22:07:08 GMT I received my MRI results for my questionable bracheal plexitus dx? I do not have any bracheal involvement, but found out I have a mass in my chest... I received my MRI results for my questionable bracheal plexitus dx? I do not have any bracheal involvement, but found out I have a mass in my chest area. I went to my PCP who ordered a CT Scan of my neck, chest, abd and pelvis, in which I had completed today. Good thing, I do not have ALS at this time. The doc said it may be nothing, but it could also be lymphoma. I will keep my positive outlook. ]]> Do I Have ALS? Is This ALS? Artisto http://www.alsforums.com/forum/do-i-have-als-als/13033-update-my-mri.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/13031-lurker.html Wed, 01 Sep 2010 21:06:37 GMT Since my "diagnosis of no ALS at this time" I have been lurking here and I must say I do not completely understand how you with ALS have such optimistic outlooks. I'm concerned because my back surgery may have failed. I'll know more after my neurosurgeon reads the MRI I had done yesterday. Whatever the issue(s) are they may be correctable. But as I read your posts on your accomplishments and attitudes I am in awe. The posts regarding the passing of loved ones are particularly sad. I don't see where the strength comes from. Anyway, I drop in from time to time, maybe to prepare myself for the suffering and dying that lies ahead. Unless I have a quick heart attack, then the suffering part is pretty much eliminated. Otherwise it's cancer. I dunno. Reading these posts gives one a perspective you don't come across in the human interest stories presented on TV or in the local newspaper. ]]> General Discussion About ALS/MND archie http://www.alsforums.com/forum/general-discussion-about-als-mnd/13031-lurker.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/13029-one-leg.html Wed, 01 Sep 2010 15:33:51 GMT I just wanted to get some help with what is and has been getting to be more progressively severe problem.Walking!My left leg(the dirty EMG one) is... I just wanted to get some help with what is and has been getting to be more progressively severe problem.Walking!My left leg(the dirty EMG one) is atrophied more, and I don't know how I'm going to get around on one leg.I suspect this is just a personal problem I'm going to have to deal with.I was just wondering if anyone has any information regarding calf protection,light braces or shields, anything to protact this ,some company or site where I could order a support of some kind.If anyone has dealt with a similar issue, how have you done it.Thanks for any help anyone can provide,if there is anything I can do.My knee is hurting because it's bearing a lot of weight.I wish this was my only problem,but I'm trying to deal with one thing at a time. I appreciate any personal experience or suggestions, it's just that I know things are not fixable. ]]> General Discussion About ALS/MND charlottecorday http://www.alsforums.com/forum/general-discussion-about-als-mnd/13029-one-leg.html http://www.alsforums.com/forum/do-i-have-als-als/13028-up-date-karin-bolette.html Wed, 01 Sep 2010 14:23:17 GMT Hi Folks- :razz:
I'm seeing a new nuerologist in October who my GP says thinks outside of the box- I'm thrilled. Have seen an OT and am being fixed up with a power chair and all the things I need in my apartment. I'm unable to hold onto my cane or walker now and tend to lean on it rather than holding it, so I'm not very stable. Can't close my hand anymore or move my toes, so when I walk I have to pick up my hold foot, as it doesn't want to bend- but I'm a stubborn one and am finding various ways to get about until I get my chair. My oxygen intake has decreased by approximently a 1/4, which is still good but does account for my SOB.

The summer has been hard for me- the weather here in Toronto has been unbareable with the humidity. I have heart problems as well so it dosen't help.

I'm having surgery to remove my thyroid and some damaged skin tissue and am hoping that might help with my swallowing and holding up my head, which is now always falling forward.

Hopefully the new doc wil be able to find out whats happening with. Will be back in touch when I know more. :razz: ]]> Do I Have ALS? Is This ALS? Karin Bolette http://www.alsforums.com/forum/do-i-have-als-als/13028-up-date-karin-bolette.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/13027-vitamin-supplements.html Wed, 01 Sep 2010 13:00:54 GMT Hi, I am new to the forum, I have joined as my father in law was diagnosed with MND in Dec 2008, and up until a few months ago he was still quite... Hi,

I am new to the forum, I have joined as my father in law was diagnosed with MND in Dec 2008, and up until a few months ago he was still quite mobile, but his health/strength has deteriorated in the last few months and has recently been in hosptial to treat pneumonia.

I cook him highly nutritious meals/soups and make fresh juice to help get as much nutrition as possible as he can't eat much now - and it has to be blended as chewing tires him out and has had a few problems swallowing.

But I was wondering if anyone knew if milk thistle and Co Enzyme Q10 supplements would help him at all?

Any helpful info would be greatly appreciated!

Thanks
Sue ]]> General Discussion About ALS/MND sburton http://www.alsforums.com/forum/general-discussion-about-als-mnd/13027-vitamin-supplements.html http://www.alsforums.com/forum/als-caregiver-support/13026-owned-amyotrophic-lateral-sclerosis.html Wed, 01 Sep 2010 11:40:51 GMT Do any of your PALS act like the disease owns them? As you know, my brother has been diagnosed with ALS. All he talks about is how bad he feels,... Do any of your PALS act like the disease owns them? As you know, my brother has been diagnosed with ALS. All he talks about is how bad he feels, every ache and pain, the tightness in his chest and how this is killing him quickly. The last time he went to his neurologist, I made a point of asking if my brother was dying. The doctor said NO. My brother is a hypochondriac and drama queen of grand proportions. Our father used to say he would have a closet full of Oscars if he went into acting professionally. I'm not disputing there is something wrong with him it's just I don't need to be bombarded by it EVERY time I walk into a room or come home from work. He says I just ignore anything he has to say, but it's like living with a broken record. Whenever he says he needs to go to the hospital, I tell him to call an ambulance. He gets mad at me for making the suggestion and then a little later says he feels better. I've said to him and his friends that one day he's really going to need to go and I'm going to respond like I have to the hundreds of "emergencies" in the past and I'll come home to find he passed away. It's getting to the point I'm thinking of putting the house up for sale and leaving this area and him for good. Let his daughter or his son put up with him. I'm nearing the end of my rope. ]]> ALS Caregiver Support DCL1964 http://www.alsforums.com/forum/als-caregiver-support/13026-owned-amyotrophic-lateral-sclerosis.html http://www.alsforums.com/forum/general-discussion-about-als-mnd/13025-kns-760704-a.html Wed, 01 Sep 2010 04:28:51 GMT Biogen Agrees To Develop Knopp's Experimental ALS Drug

Biogen has partnered with Knopp Neurosciences to push forward the development of dexpramipexole, a drug which has shown promise in preserving motor function and extending survival of ALS patients. The deal for control of the orphan drug included a stock purchase, a cash payment, and incentives valued at roughly $345 million.

are thier any other names for this is it an antibotic or what excatley is it ]]> General Discussion About ALS/MND tdamess http://www.alsforums.com/forum/general-discussion-about-als-mnd/13025-kns-760704-a.html