What is considered Final Stages?

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It is good to know that others understand. I am so ANGRY though that so MANY are out there suffering from this Beast of a disease. It HAS to STOP! I am grateful to have this forum to come to. You and your family will be in my prayers Rosella. Thank you too, Barry, for your support.

Debbie
 
I have the same problem Al so I went to control panel, mouse, functions and shut it off. I use an auto mouse program called dragger 32.

AL.
 
I was diagnosed with ALS in 2008 December. They referred me to an ALS specialist who wanted to more tests. EMG's. I refused because the first one caused me so many issues. I tried so many supplements including immunocal. It held me in there for awhile. I initially thought my first blood work included a Lyme test, but it did not. They told me all my blood work came back negative. So I assumed everything I was doing was with the initial ALS diagnosis. Another friend said the diseases are so similar, so I did another Lyme test that came back inconclusive, this one was with I-Genex, a more reliable testing. I told my doctor that I thought I got this from my dad who had Parkinsons, and if he got it he got it from India, so typing the strain would be rare. He agreed and perscribed me antibiotics and it has worked very well. BTW, there is 90% correlation to people with nervous system disease and Lyme. I would fight to get the antibiotics, even if you test negative alot of you have nothing to lose and everything to gain.
 
"Locked in" is not a phrase I ever thought I would use when describing my dad. And while he's not at that stage, I know it's coming and it kills me. I know I said this last year when my dad was diagnosed, but our family is BIG on birthdays. Mine is coming up and it breaks my heart that, due to the ALS, last year was the last time my dad would ever sing happy birthday to me.

A question about ALS and emotions...
My dad has never been one to wear his emotions on his sleeve. I only saw him cry once in 36 years and that was due to the death of a family member. But since ALS has taken over, he cries at the drop of a hat. My mom said he cried watching "Extreme Home Makeover" the other day. And a couple of weeks ago, he fell and said he tripped over my dog. Goofing around, I said, "Phoebe... you need to stay out of Grandpa's way." He started crying because he didn't want to get her in trouble.

Is this common?
 
JennB, I read somewhere that a symptom of ALS is uncontrollable laughter or crying.
 
JennB329, this is not unusual. Called emotional lability, it is something that affects most PALS to a lesser or greater extent. The actual definition is inappropriate and uncontrollable laughing or crying but like your dad I don't do the laughing part and it is not really inappropriate I just get emotional and can cry at the drop of a hat, and anything that is remotely sad or even emotionally happy like extreme home makeover would have me going. Some people have taken things if it gets bad but for me it is just something that is the new me.

Barry
 
Jenn, I certainly hope that you do never have to use the term "locked in" to describe your dad. He may never get there because not everyone does. I pray that your dad hits a plateau because that is a possibility too. With regards to the emotional lability, as you already know my dad and your dad were very similar in keeping a stiff upper lip all their lives until ALS came along. Like Barry my dad never laughed inappropriately but definitely cried a whole lot, mostly at stuff that really touched him (yes Extreme Home Makeover would definitely get him going.) Is he taking any antidepressants? My dad resisted them for almost a year after diagnosed but they really do help.

Take good care of your dad and yourself. xo
 
A large number of PALS have Emotional Lability and so do I. Citalopram helps control it for me.
 
My wife had extreme emotional lability. She went on a study drug called Zenvia (sic), a combiniation of dextromethoraphan (a common cold medicine) and quinidine (forgive the spelling, I'm working from memory). It was very effective and didn't appear to have any side effects. I believe it's FDA approved now but it still needs to be formulated at a pharmacy that does that sort of thing.

She hated the emotional lability. She was never one to cry over anything and was one of the most positive people I've ever met but she would break out in hysterical laughter or start bawling over the smallest things. It was very hard for the kids to watch as we didn't know at first what it was all about and it made them very uncomfortable. Once she got the meds, she was just like her old self again.

Good luck and my prayers are with every one of you.

Dick
 
Good idea about the mouse AL.
Thanks
 
JennB~ My hubs is entering into his fourth year since diagnosed. He has been extremely emotion for several years. His doctors thought his behavior was due to depression. He does take anti depressants now. Some days are better than others, but he is still very quick to tear up.
 
So.... Glen is not having crying issues, but laughter is in fact a problem. I have chosen to attribute it to emotional lability, because otherwise he's just being an insensitive jerk and I'd rather believe it's the disease. For you see... whenever I start getting angry or frustrated with him, usually for not taking the best care of himself, he starts to laugh. The more upset I am... the funnier he seems to find it. Like I said.. best if I can just chalk it up to EL!
 
I do not have ALS but can no longer watch Extreme Home Makeover since its first year on TV. I just cry too much. I am a cryer! I can't stand that about me. So I stick to Home and Garden Channel or Foodnetwork. And no I don't cry when a chef gets Chopped!
 
Robert and I are on hospice and i will tell you this is a rouph way to go, they need to find something for the caregivers to take like they do with the pals.
 
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