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Old 01-12-2013, 04:28 PM   #1 (permalink)
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Default Question about ALS progression? How much time?

Hi there my dad was diagnosed with ALS, diagnosed about 2 yrs ago. Recently he had to get a PEG tube. In addition, he walks on a cane now. I'm just wondering how much time he has left? I'm thinking that he is doing pretty good because he is not in a wheelchair yet. But how much longer does he have? How does the progression generally go. They type he has is not Bulbar. He got weakness in his legs first, then arms a little. Usually patients will be in a wheelchair first right before well you know....

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Old 01-12-2013, 04:38 PM   #2 (permalink)
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Default Re: Question about ALS progression? How much time?

Your dad sounds amazing. You must be thrilled he is still mobile, especially if it started in his legs. The peg will ensure he gets good nutrition, and I hope it is going well for him.

Now about your question... Everyone is different. Every progression is different. Not everyone ends up in a wheelchair.

Enjoy every moment with your Dad, and don't worry about how long... For all you know, and God forbid, you could get hit by a bus tomorrow. Indeed, life IS that fragile.
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Old 01-12-2013, 04:46 PM   #3 (permalink)
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Default Re: Question about ALS progression? How much time?

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about your question
Thank You. I really appreciate that. I am indeed thrilled that he is still mobile and fairly independent.

About my question. It matters to me because I am trying to make a decision on another matter with this in mind. So some people pass without ever being in a wheelchair? How is that so. Is it because the lung capacity decreases so much before their legs get weaker. Because I know at the last checkup, his lung capacity decreased drastically, but he is still able to walk and everything.

Thanks again for your help.
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Old 01-12-2013, 05:04 PM   #4 (permalink)
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Default Re: Question about ALS progression? How much time?

There is a video on you tube called ABC's of ALS. It's a three part seminar. I believe the third describes the end game more fully. It may be helpful to you.

I understand about decision making. We are in the same boat, but decided to make them based on the premise that I shall defy the odds.

Here's hoping!
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Old 01-12-2013, 05:19 PM   #5 (permalink)
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Default Re: Question about ALS progression? How much time?

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I shall defy the odds.

Here's hoping!
I hope for the best for you and your family. Thanks so much for your time and help. I'll go check that video out.

God Bless.
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Old 01-12-2013, 05:27 PM   #6 (permalink)
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Default Re: Question about ALS progression? How much time?

Just a guy - i take the attitude to expect and hope for the best (and try as much as possible to live in that mind set daily) but prepare for the worst and try to prioritize what i am doing as if there were no tomorrow - i dont think there is any 'right' answer for decisions you make on 'another' matter - you need to go with your on intuition and what feels right -what you feel most comfortable with. From a father/son perspective you remind me of when my mother was diagnosed with cancer and given approx 6-12 weeks - I choose to be with her virtually 24/7 another family member still decided to go on their ski holiday - i was initially mortified at this behavior and couldn't get my head/heart around the fact that their (our) mother was dying and they were off skiing... BUT... it was right for them... AND my mother got so much pleasure from 'thinking about them on a lovely holiday in the snow... and even more enjoyment at seeing their photos on their return.... it gave her a 'boost' for want of a better word
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Old 01-12-2013, 05:42 PM   #7 (permalink)
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Default Re: Question about ALS progression? How much time?

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Just a guy - i take the attitude to expect and hope for the best (and try as much as possible to live in that mind set daily) but prepare for the worst and try to prioritize what i am doing as if there were no tomorrow - i dont think there is any 'right' answer for decisions you make on 'another' matter - you need to go with your on intuition and what feels right -what you feel most comfortable with. From a father/son perspective you remind me of when my mother was diagnosed with cancer and given approx 6-12 weeks - I choose to be with her virtually 24/7 another family member still decided to go on their ski holiday - i was initially mortified at this behavior and couldn't get my head/heart around the fact that their (our) mother was dying and they were off skiing... BUT... it was right for them... AND my mother got so much pleasure from 'thinking about them on a lovely holiday in the snow... and even more enjoyment at seeing their photos on their return.... it gave her a 'boost' for want of a better word
You mother sounds awesome. That's so cool that she was so optimistic. I am watching that youtube video that was mentioned in the earlier thread and have another question. How is it possible for ALS patients to pass away at night when they are using a CPAP or BiPAP, one of those? Is that possible?

Thanks for your help.
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Old 01-12-2013, 06:34 PM   #8 (permalink)
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Default Re: Question about ALS progression? How much time?

yes -so very awesome I have never watched the vids - and have never asked that question re passing away while using cpap or bipap so will be looking out for the answers too
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Old 01-12-2013, 07:07 PM   #9 (permalink)
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Default Re: Question about ALS progression? How much time?

I remember watching that video when Bob was first diagnosed. Couldn't watch it again. Like people have said, progression is so different for everyone. Some people are still walking around and they develop diaphragm weakness and some have lost some or all of their mobility when they develop breathing issues. If your dad hasn't had trouble with his breathing, that's definitely a positive. My husband passed 9 months after diagnosis but had experienced weakness in one hand at least two years before diagnosis. He passed just as he was losing strength in his good hand and was otherwise immobile. Has your dad had an FVC test done yet? My husband's FVC was 78% when he was diagnosed but up until then he hadn't really realized his breathing was compromised. It did start showing later when he walked for extended periods, something he had always done and enjoyed. And he got his PEG after he was already in a wheel chair. It really is different for everybody. it's tough, I know. Take care. Yasmin
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Old 01-12-2013, 07:18 PM   #10 (permalink)
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Default Re: Question about ALS progression? How much time?

My husband was diaginosed three years ago. Hw walks with a walker. Gets very tired. Uses bipap at night. Arms a little shaky. I'm hoping I get a bunch more time with him.
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Old 01-13-2013, 11:13 AM   #11 (permalink)
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Default Re: Question about ALS progression? How much time?

Hi All,
Thanks for the interesting discussion. The questions are what many of us had thought about. It is a deadly game with no rules.
Mohan.
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Old 01-13-2013, 04:37 PM   #12 (permalink)
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Default Re: Question about ALS progression? How much time?

There seems to be slow and fast progressing forms of ALS and everything in between. It seems like your dad's symptoms are progressing slowly, and I hope you have a lot more time with him. But fast or slow progressing, make the most of that time. I'm progressing quickly, and that's what I strive to do.
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Old 01-13-2013, 11:34 PM   #13 (permalink)
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Default Re: Question about ALS progression? How much time?

Everyone is different. I have been progressing slowly and i am bulbar onset (usually faster) For 5 years my symptoms were mainly bulbar. Speech and swallowing. Over the last several years I need to use a walker or scooter because of leg weakness and balance issues.

My father had a form of ALS also slow progressing. He was using a walker when he passed 17 years after first symptoms.

You sound like a great son. As mentioned....enjoy the precious time you have with your dad.

Also make sure that you contact your local ALS chapter if you have not yet done so. They have been fantastic at helping me with all kinds of things.

In Your Community - The ALS Association
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Old 01-15-2013, 12:25 AM   #14 (permalink)
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Default Re: Question about ALS progression? How much time?

Just a Guy - My husband's progression appeared to be slow with first symptoms Aug 2010 and Diagnosed Aug 2011. His symptoms started in his left arm. He can still eat and walk on his own. His hands and arms are about 85% gone but can still feed himself although it is slow. From Jun 2012 to Nov 2012 his FVC went from 84% to 57% and his diaphragm MIP went from 76% to 67%. Three weeks later after a couple of breathing episodes I had to take him back to the ALS Clinic. His FVC was 52% and his diaphragm was 40%. They immediately put him on the bipap but he is having difficulty trying to adapt. You never know with this disease. I was mentally prepared for my husband to lose the ability to walk next due to the loss of muscle mass in his calves and thighs. As I have found out you have to be prepared for whatever happens next.

Wanda
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Old 01-22-2013, 08:15 PM   #15 (permalink)
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Default Re: Question about ALS progression? How much time?

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Just a Guy - My husband's progression appeared to be slow with first symptoms Aug 2010 and Diagnosed Aug 2011. His symptoms started in his left arm. He can still eat and walk on his own. His hands and arms are about 85% gone but can still feed himself although it is slow. From Jun 2012 to Nov 2012 his FVC went from 84% to 57% and his diaphragm MIP went from 76% to 67%. Three weeks later after a couple of breathing episodes I had to take him back to the ALS Clinic. His FVC was 52% and his diaphragm was 40%. They immediately put him on the bipap but he is having difficulty trying to adapt. You never know with this disease. I was mentally prepared for my husband to lose the ability to walk next due to the loss of muscle mass in his calves and thighs. As I have found out you have to be prepared for whatever happens next.

Wanda
Thanks for replying. Is there a way I can send you a message?

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