Main Cause of Death

[grgizi121]

I am sorry if this post seems rather blunt but I have no idea who to ask a question that just wont go away, its been in my head for months!

What specifically do people with MND normally die from. Is it normally respiratory failure? On a percentage basis does this account for 90%, 50% .... if so what would the other causes be?

My husband was diagnosed May 13 and although his arms, hands, legs and speech are severely effected and he is starting to have a little difficulty swallowing his doctors aren't concerned that his breathing tests have 'decreased a little' and stated it didn't suggest any sign of muscle weakness. Which we had started to fear due to other symptoms

Obviously we think this is great news so mentally we are planning for the future assuming we still have a lot of time left as a family to plan holidays and looking forward to this Christmas and next! I am more confidently assuming he looks set to exceed the 3-5 year life expectancy. Yet there is a nagging doubt in the back of my mind that this might not be the case!? That I am just kidding myself and that there are other equally as serious things that may shorten our time together still?

Every time I ask a medical professional what we should expect I get the 'every one has a different path' statement! Which I understand but I need to know what the potential life ending issues are! Should i be as concerned about swallowing as I am about breathing issues, or is this resolved successfully with a PEG in most cases? Its really difficult to ask these questions in front of my husband and almost impossible to ask any other time as I have no access to the medical professionals directly

We have two children 3 and 7 and I know my husband and I want him to be around as long as possible for them. I know I have some anxiety issues nowadays and I also know I sound a little crazy, I think maybe nowadays I am! But any help advice very much appreciated

Thanks in advance

 

[Nikki J]

I don't know percentages but yes it is breathing that generally kills us if the nutrition issue is addressed through the feeding tube. Choking and aspiration can be hazards when swallowing is compromised but we still try to eat There are other hazards PALS die as a consequence of falls more than you might think, it has happened to members of this board and others I knew too. Immobility presents hazards including blood clots. At least 3 current members have survived them. Others have not.
It is fine to plan for the long term but do not put things off either. None of us can say what will happen; I have often longed for that crystal ball!

You will find a lot of support from other CALS. There are others here with young children too but all of them will offer you support and advice when needed.

 

[Nuts]

Welcome, and as Nikki said, please stick around. This is a great please for conversation that you just can't have with other people around you...

My husband recently asked his doc what the most common cause of unexpected death is. Please note the difference between respiratory failure, which you generally see coming, and having a seemingly healthy (for a PALS) person pass away unexpectedly. He said it's blood clots. Inactivity is a killer. Nikki also mentioned falls, which are surprises, but as a CALS I'll say that I saw those coming because my husband was more stubborn than careful.

The best we can do is to prepare as quickly as possible for progression--put equipment into place and arrange affairs, and then live every day to its fullest. There is just no way to predict, so squeezing the joy out of what we have is about the only thing to do.

I do hope you stick around--I can't imagine going through this without this groupl

Becky

 

[lgelb]

GR,
It's do the things you can while you can. I would, however, caution you as others have that you cannot prognosticate much from what the docs express is going on. I'm not sure that you can count what you reported as "good news." Your husband is progressing, and significant changes can take place overnight. Docs are human and they respond to your clear wishes. If you display a need for reassurance, verbally or not, they will want to provide it.

You want to believe your husband will be one of the ~20% that hangs on past five years, but that's not something, in your words, that I would "confidently" assume from your description. And it's not just about hanging on, of course, it's about quality of life.

You want to plan, so hope for the best and plan for the worst. Plan those vacations for the next season that they make sense, not "some time in the future." Nikki and Becky said it well; I'm just going to be a trifle blunter. The ability to travel often decreases considerably well before death.

Apart from that bit of realism, welcome and we look forward to hearing more about your family.

Best,
Laurie

 

[4tloml]

grgizi121, I don't think you sound crazy at all. And anxiety is a pretty normal state considering the wrench ALS tosses into the middle of our lives. Please make sure you do what you can to take care of yourself. LOTS of us get medication/therapy help during this time. ALS is an extraordinary condition, so extraordinary responses (ie, things we might not have to do under "normal" conditions) become quite reasonable.

Nikki & Laurie are two of the most knowledgeable, experienced people I've found on the subject of ALS and I would trust their advice. I would just share that, about holidays, these seem to be what my PALS most looks forward to, so we just keep planning. We get travel insurance so if we need to cancel we can, but he brightens up whenever he has a trip or event to tell friends & family about, even if it's just a weekend road trip or concert. It gets harder for the CALS to handle all the gear that becomes necessary when traveling, especially when you have such little ones, so if you have friends and family to help and to share in the adventures, that's a real blessing for everyone. So keep planning, assuming the best, but stay flexible. Life is full of Plan Bs, with or without ALS.

 

[nebrhahe53]

Breathing can decline very suddenly. In 4 months I went from 60 to 40% and my mep went from 120 to 30. I can't breath without the bipap now and realistically I doubt I'll make it more than a few months

 

[Atsugi]

Neil, thanks for the update. I have tears in my eyes, now. I always watch for your posts and wish you the best quality of life that is possible. I guess I'm trying to say that, in front of everybody here, I love you, man. --Mike

 

[affected]

gosh not wanting to hijack but DITTO WHAT MIKE SAID!

Neil I look for you all the time and I miss you here. I don't know how much it may help but you are loved by a whole family here who know just what a horror this disease is.

 

[nebrhahe53]

Mike and tillie now I have tears in my eyes. I've stopped posting as my health declined because I didn't want to burden everyone, and quite honestly, my mood doesn't make for positive posts.
My wife is busting her butt trying to move us into a new house which she has completely upgraded for me, and I'm not sure my body will make it that long.
I'm trying though. Must say its pretty scary. We are going to call hospice in a few days. Realistically that's all that's left now.

 

[lgelb]

Neil,

What are we here for, if not for good, less good and bad?

We look forward to seeing a pic of you in the new digs!

--Laurie

 

[gooseberry]

Good to hear from you Neil. Breathing is a concern for Steve and he uses his bipap for hours during the day but, with the renovations done at our house, he can use his tools much more easily. Don't give up my friend. You may find that a better equipped living space for your needs really helps!

 

[Green Queen]

Bugger no hijacking Tillie....Neil! Far out! I think we all worry more when people don't post rather than sad posts, so as Laurie says, post away!
We are all here for whatever comfort and support we can give you and your wife.
I think we are officially having a cry-fest.
God bless you Neil...and as Glenn says...all of us, Janelle x

 

[cheerleader]

Neil, ditto, ditto,ditto! Here you don't have to worry about being upbeat or having happy news! You are a part of this marriage- for better or worse! SO good to know you are here, and your wife is by your side making life as good as it can be. Tons of hugs sent your way. Donna

 

[JimInVA]

In March, Darcey was told by her neurologist that she was within the last 6 months of life. He based this upon her breathing scores which had been regularly declining and were at 15% in March. Yesterday, she had an appointment with her GP who asked where she thought she was in regards to life's end. Darcey said, "I don't know. I'm still loving the fact that I'm living each day. I figure that I'm two months past the expert's best guess and I'm looking forward to Thanksgiving and Christmas; neither of which I anticipated seeing this year. Jim's birthday is in January... and I'm hopeful of sharing in that. And Jim has tickets to see David Gilmour in April... and I would SO love to listen to him share this bucket list item of his. So... I don't know. I'm ready for my last day at any time... but I'm also ready to take joy in each additional day allowed." To which the GP said, "So... I guess we should schedule your next 6 month visit!"

I guess what I'm trying to imply here... is that sometimes the numbers "don't mean shit"! Live for the day and not for how the numbers suggest you should feel.

Jim & Darcey

 

[chally]

neil, love ya man and sending good vibes your way. one day at a time is all anybody gets! love ya chally