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SheilaZ

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Jan 24, 2016
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51
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Lost a loved one
Diagnosis
01/2016
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US
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West Virginia
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I've been reading a lot of post, and I was wondering how does one know how long one has with ALS. The million dollar question, I'm sure! My Hubby was diagnosed last month, though they think he has had it for 2 years, already! He has severe breathing issues, he can't walk as far as 40 ft, until he's having breathing problems. He has muscle loss in his hands and fasciculations from neck down to his legs. He has severe neck pain, drooping...we are going tomorrow for a "Head Master" brace...used to support his neck. Also, getting a wheel chair, it's to difficult for him to walk, legs are weak, but mostly his breathing is so bad. He is on a Trilogy, at night and a lot during the day. He can't lay down to sleep, or at anytime! He can't breath at all laying down. So much we want to do, he is so strong....I feel as if everything is happening so fast...I'm scared...he's the love of my life...my best friend!

GOD Bless Everyone
Sheila
 
who knows . . . . I understand where you are coming from. I live in the 7th largest city in the United States which means I have access to several medical centers throughout San Antonio--including the the University of Texas Health Science Center. There are no shortage of neurologist or any other professional medical specialist. This forum access people from all over the world from remote locations that have limited health care providers. There might be people on this forum from towns that have a population of two thousand with the nearest major city hundreds of miles away. I give people the benefit of the doubt when it comes to late diagnosis and assume they finally found the resources to find and get to the right professional to give them a proper diagnosis.
 
I've been reading a lot of post, and I was wondering how does one know how long one has with ALS. The million dollar question, I'm sure! My Hubby was diagnosed last month, though they think he has had it for 2 years, already! He has severe breathing issues, he can't walk as far as 40 ft, until he's having breathing problems. He has muscle loss in his hands and fasciculations from neck down to his legs. He has severe neck pain, drooping...we are going tomorrow for a "Head Master" brace...used to support his neck. Also, getting a wheel chair, it's to difficult for him to walk, legs are weak, but mostly his breathing is so bad. He is on a Trilogy, at night and a lot during the day. He can't lay down to sleep, or at anytime! He can't breath at all laying down. So much we want to do, he is so strong....I feel as if everything is happening so fast...I'm scared...he's the love of my life...my best friend!

GOD Bless Everyone
Sheila

How long does one have? That's such an important question, but we can never come up with a reliable answer.

Some of us tried comparing pulmonology results to measure progression. I personally asked for a blood gas measurement of CO2, but was denied. I was told that, at this point, the goal is simply to make the patient comfortable and handle any new symptom as it comes up, day by day.

You probably already know that breathing is usually the big deal. Pneumonia takes a lot of people. Ventilation can assist the breathing problem, but it brings up another question: Do I want to live longer, if I'm going to be totally paralyzed during that life?

I'm so sorry you're in this part of the disease. It's the toughest time, I think.

Perhaps I can give you some comfort by saying that, while my wife lived only 8 months after diagnosis and she reached the "totally locked in" state, her passing was totally painless with no fear, surrounded by loved ones in her home. Whenever I go, I hope that's the way it happens.

You might find it better to take this disease day-by-day. You wake up, see what his condition is, and try to make the best day possible for him.

Maybe someone else will have a better idea. But that's all I've got.
 
who knows . . . . I understand where you are coming from. I live in the 7th largest city in the United States which means I have access to several medical centers throughout San Antonio--including the the University of Texas Health Science Center. There are no shortage of neurologist or any other professional medical specialist. This forum access people from all over the world from remote locations that have limited health care providers. There might be people on this forum from towns that have a population of two thousand with the nearest major city hundreds of miles away. I give people the benefit of the doubt when it comes to late diagnosis and assume they finally found the resources to find and get to the right professional to give them a proper diagnosis.
We've been a year trying to get my Husband Diagnosed, at first they thought he had severe arthritis in his neck, he was sent to a Chiropractor....his appt to see a neurologist was for March this year....his pulmonary Dr got him in to see a neurologist in just a few days in January! I felt at first he was passed around like a ball, hematologist, cardiologist....sleep apnea test, which he couldn't even lay down to sleep....chiropractor.....he was even in the hospital with pneumonia 1st week of Jan this year........what a nightmare! My Hubby truly is a strong man.....we truly never imagined it would be ALS! I hate to complain, when so many are suffering....I just hate the system!
 
How long does one have? That's such an important question, but we can never come up with a reliable answer.

Some of us tried comparing pulmonology results to measure progression. I personally asked for a blood gas measurement of CO2, but was denied. I was told that, at this point, the goal is simply to make the patient comfortable and handle any new symptom as it comes up, day by day.

You probably already know that breathing is usually the big deal. Pneumonia takes a lot of people. Ventilation can assist the breathing problem, but it brings up another question: Do I want to live longer, if I'm going to be totally paralyzed during that life?

I'm so sorry you're in this part of the disease. It's the toughest time, I think.

Perhaps I can give you some comfort by saying that, while my wife lived only 8 months after diagnosis and she reached the "totally locked in" state, her passing was totally painless with no fear, surrounded by loved ones in her home. Whenever I go, I hope that's the way it happens.

You might find it better to take this disease day-by-day. You wake up, see what his condition is, and try to make the best day possible for him.

Maybe someone else will have a better idea. But that's all I've got.
Mike, I'm so sorry for your loss! Thank you for answering. I will be thankful for every day I have with him, and not take one day for granted! I will keep praying for my Hubby and for all who are ill. GOD Bless you and your family!
 
Atsugi says his wife died 8 months after diagnosis, Steven Hawking was diagnosed 53 years ago. So somewhere in there. Statisticaly the prognosis between2-5 years after diagnosis 80% of patients are dead. Having said that, I just had dinner a couple of weeks back wiht someone who was diagnosed in April 1992. So the answer is ; Who knows? My first symptoms were in August 2011 and I can still walk short distances unaided.
Vincent
 
My husband was diagnosed in October, confirmed this month by a second opinion. Based on what I've read on this forum, he has been diagnosed very early in the disease; several people have said they experienced symptoms like my husband's but did not think anything of it and weren't officially diagnosed for a year or two afterward. His symptoms are confined to his left hand and lower arm for now, but he has body-wide fasciculations. The ALS specialist said he thinks it is a slow progressing variant but honestly, I don't think he can tell in one visit. I'm trying to see some good in getting an early diagnosis but it's hard to see anything positive.
 
It is indeed the question we all want answered, and yet maybe we don't want to know either ... such a paradox!

There are so many variables that prediction is impossible.
Taking strategies such as early uptake of peg and bipap may increase life expectancy, but not always. They certainly improve quality of life greatly.

Then add in things like - where progression is fastest. We can't predict this, but a PALS with leg onset that does not progress fast to breathing and bulbar issues may have a longer life with ALS. But if they sustain a fall, they may have a shorter life. Too many PALS die from head injuries in falls!

A PALS may be doing ok in their breathing, but if they aspirate and develop pneumonia, it can be a game changer. Then again, other PALS have a pneumonia and recover well for years.

Some PALS seem to progressing fairly slowly and doing well and simply don't wake up one morning.

So it's hard to even predict when you are monitoring progress!

My husband was bulbar onset, diagnosed May 2013 and gone April 2014. Even though he was rapid progression, we know that there was evidence of ALS working on him around 3 years before diagnosis. This says to me that it was working on him even longer than that, because it was the discovery of quite extensive atrophy. The things happening that far back would have never alerted us to seek medical attention, though we did seek physio attention for something else and that was when the first signs were noted. Neither of us picked up that the comment on shoulder muscle atrophy was significant because he still had a lot of strength, in fact we jokingly called him the digging machine as he was always out there with me creating new gardens and digging fence post holes and the like, even with the atrophy!

This again makes it so hard to say. It would appear to me, that in our case, ALS was working through him slowly for several years. Once the bulbar symptoms began however, it picked up speed and became incredibly aggressive and rapid. However, he also had FTD (which started nearly 2 years before he was diagnosed) and that impacted on many things such as refusing to take in calories and several falls resulting in serious injuries which all sped up his progression.

What I learned, was to take it a day at a time. Plan ahead for equipment and services to avoid crisis, but try to make each day count and be grateful for having it.

None of us know when we will go, no one gets out of here alive after all, not even CALS. Focusing on the end can rob you of the now. Well that's my 2c and not set in stone for others.
 
My diagnosis took more than 1.5 years. It appears to me that there are different sub sets of this disease classified by they way and place they present. Tillies husband was diagnosed as Bulbar onset, but sounds like it may have been limb onset. Mine, and Gooseberry's husband (Steph and Steve), was breathing onset, we started at the end. For each sub set I believe the time of life is different. It is my opinion that when more is discovered we will see that there are multiple types of ALS, each with its own life expectancy.

Try and enjoy each other. Support your husband in his choices and allow him the most freedom he can have. This disease takes and takes, and is scary for those living with it as well as those caring for us. There is no real help for us just support. Tricks, devices, and advice are all we have for what days are left.
 
Pete I agree, the different onsets really do make sub-types.

I don't know about limb onset. The wastage was in his shoulder blades, so down his back and wasn't affecting strength at all. I would massage his back and he would say - my back never used to feel like this! I would shrug, as we had only been together a couple of years, I didn't know what his back had felt like.

Once his arms started wasting, which was after he could barely speak and had many swallowing issues, as I would massage them it would give me chills as I realised that his arm muscles were feeling more and more like his back had felt some years before. Instead of nice round, defined muscles, they were just becoming knotty strings.

So I don't know what onset it is called when the muscles in the back around the shoulder blades are first to waste. I haven't actually heard of this as an onset before ...

Once his arms started to become affected it started in the hands losing strength, fasciculations in the biceps and the weakness spread from the hands up his arms. Rather than the weakness spreading from the shoulders down. It was then well after he lost use of his arms that his neck became weak. To me it's just yet another thing about the incredible difference we see in how the 'same' disease affects any one person's body.

Certainly once the bulbar symptoms started, it moved through him in a very classical bulbar onset way.
 
Sometimes I think it's a blessing to not know. Instead of ticking off a list of milestones like people do with babies and young children, we just deal with what comes--so long as we have prepared for the things we can prepare for. Take care of legal matters, get the house modified as best as you can, and get what equipment you can in place. Then live as much as you can--every day.

My husband's diagnosis was quick once we started looking for it. In retrospect, he thinks he was a year in when he was diagnosed and I think closer to three. He counts back to when he first started stumbling, but armed with the knowledge of his diagnosis I think the early (terrible) leg cramps and fasciculations may have been related to the disease. It was the second time he mentioned stumbling and difficulty getting up from the ground that his PCP started running tests, but to be honest he'd just chalked it up to aging until he started falling. He tells everyone he thought 55 was just a bad year. It turned out he was right, except about the "just" word.
 
Thank you for sharing.
 
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