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ldab

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May 17, 2013
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Learn about ALS
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New York
We just got the diagnosis yesterday. I've done months and months of research worrying and wanting to be prepared for whatever. He believes that diet and exercise will fix him. He doesn't fully understand this illness and the doctor was limited in what she said. We got no prognosis or explanation of what was going to happen. Only lots of big words and that we were to follow up in the ALS clinic in a couple months. Yes and new medication. He is now slowly asking me questions, he knows I've done the research. I'm really kind of angry that I have to explain anything. Whose to say I even know what I'm talking about....

Can anyone share their experiences of how fast changes came. He began with occasional slurred speech a year ago. His speech has changed dramatically. He is still understandable to me but others have to work at understanding what he says sometimes. Occasional choking a year ago to every meal now.

Thanks
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,466
Reason
PALS
Diagnosis
04/2014
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US
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MA
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Boston
I am very sorry. Everyone progresses in their own way so it is hard to say how things will go. If yu have not already read the li nks provided by Sadie in her post about articles for new members. Start making lists of questions for your next appointment. Contact your local ALS chapter. Try to take each day one at a time while preparing as best you can ( i know contradictory is it not). Take a little time to grieve and adjust but also start doing things while it is easier And remember to breathe yourself.
Please ask any specific questions. We will try to help
 

bowser

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Aug 22, 2013
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03/2011
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Arkansas
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Cherokee Village
My wife's first symptoms were slurred speech also. We thought she had a slight speech.
By the time she was diagnosed with ALS ( March 2011) her swallowing had slight problems.

June of 2011 she traveled alone from MN to MI VIA Amtrak to visit the son and family.
She took an ipad for ease of communicating and took a cane.

Sept 2011 ................feeding peg installed and she started getting 1/4 nutrients via feeding tube and 3/4 via eating CAREFULLY.
February of 2012 ....she had a choking incident in a restaurant and an ambulance trip ( 2 days in hospital)
At that point................50% feeding tube, 50%eating
October of 2012 ,,,,,,,she went on 75% feeding tube and 25% eating. ( at this point she started to need assistance with a spoon as hands were getting weak)
November 2012...............100% feeding tube as she was choking on the 2nd spoonfull

December of 2011 she started using a walker.
May 2012 a wheelchair
July of 2013 paralyzed and confined to a hospital bed 24/7

As of today, we communicate by me asking questions and her blinking her eyes to answer.
Her mind is still sharp..............she has no pain.................she still maintains a good mood.

She is on " borrowed time" however as her lung capacity has deteriorated a lot.
 

bowser

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Cherokee Village
( by the way) I may be an anonymous stranger , but nothing that I posted is an " exaggerated tale "
 

ldab

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Learn about ALS
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New York
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New York
I'm so sorry and thank you so much for your timeline. I'm so scared. I look at him now and it just doesn't seem possible for him to get that bad that quick. Then I'm reminded of a video from 6 months ago (we just watched) and we both laughed, cause at the time he was complaining of slurred speech, but he spoke almost perfect. Let's see that was the first of May... I guess not 6 months. Thank you again for sharing. Prayers for your you and your wife.
 

affected

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Apr 26, 2013
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05/2013
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lala land
I'm so very sorry you had to join us here Idab, but welcome to the place where you will get true support and understanding.

My PALS is bulbar onset, but everyone is different so it is so hard to tell you what to expect, and I struggled the most with this in the first months after diagnosis. We were only diagnosed earlier this year, so I'm not much further down the track of getting used to dealing with that diagnosis. I can assure you that the first month or so is the hardest, but then emotionally it does get a little easier. I'm not telling you things will be fine and it all gets easier, but that first month is really difficult.

My PALS started noticing mouth changes around June 2012.
Now I can understand him about half the time he talks, he is just moving onto pureed foods as of today (his choice).
His arms and hands are wasted and weak, but still some functionality there.
Breathing muscles are being affected but he breathes unaided.
Legs feeling uncoordinated and muscle wastage is showing in the left leg the past week or so.

The difference between my PALS and bowsers I think is the muscle spasticity which gives my PALS a lot of pain.

I can understand feeling angry that you are explaining to your husband now, but do you think you could take a position of saying you don't know for sure and encourage him to research with you or something?

Also as Nikki said, contact your local ALS chapter.

And come here and vent in the caregivers section when you need to, we will understand and help along the way. I don't know how I would be doing now if it weren't for the support of people I've met here.
 

ECpara

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Joined
Jan 7, 2012
Messages
605
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Lost a loved one
Diagnosis
02/2012
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GA
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Thomasville
Idab, I understand your anxiety over the prognosis. Every PALS is different. My husband's bulbar ALS is quite slow, I pray your husband's can be, too. Mine started with very slight slurred speech in spring, 2011. As his speech got worse, he was diagnosed at Duke ALS clinic in February, 2012. He began having swallowing difficulties shortly after that in addition to many fasciculations in his limbs. At the urging of his neuro he had a PEG put in in November, 2012 for "future use" (glad we did!) By February, 2013 he was no longer able to speak, using an iPad to communicate. Just this month he has pretty much given up eating, taking about 95% of his nutrition via PEG. He has a lot of difficulty with saliva and phlegm. BUT, he still has full mobility; drives, golfs, hunts, does yard work, etc. No biPap yet either. We were told bulbar was fast progressing, at best 3 years. But that sure isn't his case, I don't think anyone can put a number on it. Hope your husband's ALS is as slow as mine. I actually think it helps that my husband's "head is in the sand". He won't come on this forum, doesn't read up on it, will ask me questions as they come up, but pretty much just takes each step of this journey with no expectations. He's going about his life the best he can! Sorry you're on this journey with all of us, but there's so many wonderful folks to share with on here. Blessings to you and your husband!
 

jellis86

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Joined
Jun 22, 2012
Messages
254
Reason
PALS
Diagnosis
02/2013
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US
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WI
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Eau Claire
Idab, sorry you have to be here but there is a wealth of information available.

My symptoms of bulbar onset ALS started in either late 2010 or early 2011 with strange swallowing difficulties. It was like I couldn't coordinate my tongue/palate/throat to complete the swallowing process. It took pure concentration to swallow food yet liquids went down easily. As fast as it started it went away, no swallowing issues in later 2011.

What started then, about August 2011, was me constantly clearing my throat. It drove my wife nuts so I went to our GP. He prescribed a nasal steroidal spray, an antihistamine, and doubled my Prilosec from 1 to 2 daily. He figured that my reflux was irritating my throat and causing some of the drainage.
I was on these meds for about a month and it worked, no more throat clearing. However, I noticed a very slight change in my voice, like a slight itch change. I actually suspected the steroidal nasal spray and stopped using it for about a month. My speech didn't change back to normal but my throat clearing started up again, I went back on it.
By Feb. 2012 my speech was obvious to me but almost no one else. (I say almost because at it turned out, my Mom and Brother noticed the change, they thought I was drinking, a LOT!)

By summer my GP started performing tests, head MRI, Lyme disease, etc. Then a referral in May to ENT, he wasn't much help, said my tongue looked a little thick. Also that I have chronic tonsillitis but doubtful that was the cause.

In July I started to see neurologist. He suspected MG (Myasthenia Gravis). Tests came back negative for this and other possible diseases.
In August 2012 I started having problems swallowing water without being completely upright.
Then in Sept of 2012 they performed an EMG which did have some abnormalities.

This started a battery of ALS mimicking disease tests in Oct 2012, all came back negative.

In January 2013 my Neurologist suggested I might have ALS. He referred me to the Mayo Clinic and on Feb. 14, 2013 I was officially diagnosed with bulbar onset ALS.

At that time I had very slight weakness in my left thumb/forefinger, my tongue was starting to atrophy and my speech was much worse.

I had a feeding tube inserted in May as a precaution. My breathing was at 60%.

Since my diagnosis, my left thumb/forefinger is very weak and my tongue is almost 100% atrophied. My left hand show some weakness and lately my right thumb/forefinger is starting to show a slight weakness.

I use an i-Pad to communicate, even though some of my words are still understandable, it makes it much less irritating to use the AAC.

I take all of my meds and 80% of my fluids via my feeding tube. I supplement one meal per day via the tube. I can still eat but it has to be ground or pureed.

I still have full use of arms and legs, and my breathing tests have improved slightly, staying at at 68% since July 2013.

I really can't say how quickly I am progressing Slower than some but faster than others.

What I do is try and focus on today and not worry about tomorrow until it gets here.
 

Al fox

Active member
Joined
Aug 11, 2012
Messages
35
Reason
PALS
Diagnosis
06/2011
Country
Cad
State
Ontario
City
Toronto
I was diagnosed in June of 2011, and am a slow progresser I also have bulbar onset ALS. Im on the Deanna protocol and also get accupunctute twice a week. My speech has gotten progressively worse over the last 2 and half years though most people still understand me. My main issue is the pain I feel in the back of my neck every minute of every waking hour. It's a real downer.
 
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