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MtPockets said:
Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ?. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL
THANK YOU AL, You have a great way of taking the words right out of my mouth. sherry0459
 
THANK YOU AL. Took the words right out my mouth. sherry0459
 
Sometimes you just got to vent a little right Sherry? Doesn't change anything, but sure makes me feel a little better to let it out. Especially here where others will understand.

God bless
Capt AL
:)
 
Still waiting for my appt!

I have had some minor probs. with my legs for about 3 years,and seen to have atrophy around my ankles.I had slurred speech a couple of times in th past month,and now Ive had a twitch in my tongue for 3 weeks,and I feel like I am CONSTANTLY clearing my throat...and my tongue is scalloped on both sides...That couldnt be anything other that Bulbar Palsy,right?But,my tongue still feels really strong and I dont have a problem moving it around at all?Also,I started having a feeling in my arm like I had worked out last week,that hasent went away...If this is ALS could I be progressing this fast?
 
Just a note ... it was interesting to find references to aversion to odors, as I went through that with spicy tastes and odors for about six months ... had to leave the room if someone opened a jar of cinnamon! ... but it went away. I thought that ruled out ALS because everything I read said, "no sensory changes with ALS." I guess I was wrong again! :)

Ref: Losing weight. I lost about 25 pounds in first two years of symptoms, not because of chewing/swallowing difficulties (which were there) but because I had no appetite. Could only eat a few bites at a time, and mostly found food repugnant. (My symptoms started immediately after major surgery, and got worse after another hospitalization, both of which left me weak and just plain feeling sick.)

Although I am having MUCH more trouble swallowing now than I did in the beginning, I am starting to gain a little weight, as I feel stronger and can tolerate food better. I'm making an effort to drink Ensure, make fruit smoothies with added protein powder and liquid vitamins, etc., eat small amounts about 10 times a day, and have put on a couple pounds.

In my experience, when you feel really lousy, you lose your appetite. If you have chewing/swallowing problems, it just makes it worse.
Beth
 
I had never tied the aversion to smells to the ALS. I can not stay in a room that has had perfume sprayed in it. Or bathroom sprays, the smell overwhelms me. I feel like I cannot breath. This started about the time I was Dx with ALS. I guess there might be some kind of connection.
 
Hi ... I think you've found the answers you were looking for from others, but I'll join in, as I have ALS bulbar symptoms only (so far). It started March 16, 2006, so it's been 27 months for me so far, and aside from speech and swallowing (my swallowing has improved a lot in recent weeks, thank heavens, for reasons I don't understand), I'm doing OK. (Although I'm noticing weakness in my left hand now ...)

It affects both my voice and my speech ... voice goes from hoarse "whiskey voice" to crackling-old-age voice to nasal monotone ... the longer I try to talk the worse my voice gets. My speech is really bad, but sometimes it does seem to be a tiny bit better. I don't really notice much day-to-day change.

I, too, had an MRI and it was perfectly normal. My understanding is that MRIs don't detect ALS ... they are used to diagnosed or rule out MS. My first EMG 9 months ago was normal, too, but second one last month (much more sophisticated and extensive, done at a neuro clinic, rather than in a private doctor's office) showed denervation in three areas, including tongue, of course.

I lost 25 pounds in 2 years ... 12 pounds last December alone, when I was hospitalized. I think part of the weight loss is just feeling sick and weak, and losing the ability to (chew, swallow) enjoy your favorite foods, which would tempt you to eat. Living on mashed potatoes, pudding and yogurt would kill anybody's appetite! However, I've stopped the weight loss, and even gained two pounds since the diagnosed in May. The clinic neuro said to concentrate on getting enough nutrition, so I work at it.

I certainly can't diagnosed anybody, and have only 27 months experience with bulbar ALS, but I too urge your family member to get the proper tests and get a second ... or third ... opinion! Tough as it is to face, I'm sure proper medical treatment can make a big difference in handling this disease, if this is what she has. She may be missing a golden opportunity to slow down the progression with proper treatment.

I'm so sorry you both have to be going through this, but she is lucky to have you by her side. I hope she will find her way to accept further tests and evaluations by experts in the field.
Beth
 
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One last question...

My left arm started feeling heavy last Monday,now this morning,so is my right!Do limbs "usually" get effected at the same pace?
 
Not usually within a week of each other.
AL.
 
Hi soory to here the situation ,my name is Kevin 49 yr old male was officially Dx with als bulbar onset in June 07.But have been having symptoms for two years.It has taken that long for my speech to completly go where only close family members can get the drift at times at what i am saying,i write lots of notes and use a speech system called a dynawrite.I am lucky in some respects as my progression is slow and physically still good.But its frustrating to be sure.And I am sure that being in denial does not help the whole family .ALS does not effect just the person who is afflicted but the whole family unit.My advice is to find a qualified Neurologist conneected with an ALS Clinic and goe from there,good luck and my prayers are with you..Kevin from Calgary Alberta
 
Just a note ... it was interesting to find references to aversion to odors, as I went through that with spicy tastes and odors for about six months ... had to leave the room if someone opened a jar of cinnamon! ... but it went away. I thought that ruled out ALS because everything I read said, "no sensory changes with ALS." I guess I was wrong again! :)

Ref: Losing weight. I lost about 25 pounds in first two years of symptoms, not because of chewing/swallowing difficulties (which were there) but because I had no appetite. Could only eat a few bites at a time, and mostly found food repugnant. (My symptoms started immediately after major surgery, and got worse after another hospitalization, both of which left me weak and just plain feeling sick.)

Although I am having MUCH more trouble swallowing now than I did in the beginning, I am starting to gain a little weight, as I feel stronger and can tolerate food better. I'm making an effort to drink Ensure, make fruit smoothies with added protein powder and liquid vitamins, etc., eat small amounts about 10 times a day, and have put on a couple pounds.

In my experience, when you feel really lousy, you lose your appetite. If you have chewing/swallowing problems, it just makes it worse.
Beth

Oh my gosh I have told 5 neuros that besides my slurred speech I couldnt take smell If I opened a lemon I couldnt breath I gota facial and the perfume nearly stopped my breathing. my husband used vicks on himself and I couldnt speak it took my breath away and not one neuro had an answer for me .You would think they heard someone mentioned it They made me think I was crasy. It was my first symptom.

pat 1
 
ALS and smells?

Smell sensitivity associated with ALS sometimes? WOW.

It is amazing how much we learn on the forum that no Doctor has been able to tell us over the years. I think they should be on here researching our symptoms to LEARN from our experiences.

Thanks to everyone for sharing everything. I know we talk about some strange things sometimes on here, but we need to share the information. Please do not be embarrassed to bring up anything. We are all adults and are probably going through similar things also and have questions ourselves.
 
Pat, my grocery store had a display with cinnamon near the front door and I finally asked the manager to take it down, otherwise I would have to start shopping elsewhere. I had to hold my breath and run past the display when I entered the store.

I've only heard this mentioned once before, on an MG forum, but it's a relief to know I wasn't completely out of my mind.

Beth
 
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seems fast to me?

I have slurred speech 7 years and have good and bad days noww I have weakness in mmy arms How about you any other symptoms

HI, I was have Bulber AlS. Found out three months ago. Feb 4th... I had some slurring and a little twitching on my chin... some trouble swallowing. Three months later, I have an awful time with lots of foods swallowing and always need a drink when I drink. I am very short of breath and my MD here put me on oxigen. My level was 72 at night. I am seeing the twitching in my hands and my feet. I am feeling some also on my upper arms neck and shoulders. To me this seems like it is moving pretty fast? How does this compare to you? At this rate I wonder if I will have three years.. Very sad... Lin
 
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