My latest news

[HisWifeKate]

It's official. My husband is scheduled for his feeding tube and diaphragm pacer surgery. This can't really be happening. I'm so heartbroken and afraid.

Ihatethisihatethisihatethis

 

[ottawa girl]

I hate this too. I hate it for you and I hate it for me.

But, I know several PALS who are doing amazingly well with the pacer. Once you no longer fret about his weight and choking hazards, mealtimes will improve. The pacer is new.... just a short while ago, it wasn't even an option.

I know this is brutal for your entire family. But there are many good days ahead.

Wishing you strength.

 

[zoohouse]

I know how you feel. I thought I had a good handle on this stuff, but in the last week I started to notice Tim using accessory muscles to take a breath before he talked. He has been in a motorized wheelchair since May, and he has lost most of the use of his hands and arms, but his voice is strong and clear, and his weight is great, even a bit over. He has been using his bipap for over a year, as he had sleep apnea long before he was diagnosed. When I read about the DPS I got really excited and we called his physiatrist to see if she could test for phrenic nerve impulse. It went downhill from there. It is not recognized in Canada as a treatment for ALS, so she said it would not be covered. The great thing is that Tim is American, and covered by the VA. She made me feel like Tim was beginning the end stage of this disease, and there is no way we are ready for that.
Going to Seattle Nov. 3rd (my birthday) and the best present ever would be if he qualified for a DPS, and they will do it.
Reading this thread and others on the DPS has given me some hope again.
Paulette

 

[cervus]

I hate this too! The pacer wasn't an option through the course of my husband's illness. Elaine is, as usual, right. So many are doing so well with the pacer. And the PEG, as big as the admission is, will provide not only nutrition but so much peace of mind. Good wishes to you. I hope your husband qualifies, Paulette. And happy birthday! Yasmin.

 

[erikita]

Hello all. I am new to all of this...what is a "pacer"?

 

[HisWifeKate]

From what I understand, I'm sure other threads clarify this more.. The pacer is basically I device that will send electrical impulses to my husbands diaphragm to keep it stimulated. The idea that is that it will stay stronger and not atrophy as quickly.
All good things. I guess I should be cautiously hopeful/grateful but this all still hurts so much. The realization that he has gotten worse again still stings like the first time he said ALS.

 

[AfraidButNotAlone]

Good Luck
God Bless

 

[zoohouse]

I just found some literature that the VA has funded 6 DPS', and it is recommended as it has proven to be more effective in extending life and improving quality of life more than Rilutec, or even a peg tube. It is also cost effective as it can postpone the need for a ventilator up to 24 months. There is a trained surgeon in Portland Oregon, which is a skip from Seattle. A spark of cautious hope is ignited!

 

[bowser]

How can it extend life longer than a peg ?

When you can't eat you die.

My wife would have been dead since November of last year as that was the last time she had a spoonful of food orally.

 

[AfraidButNotAlone]

How can it extend life longer than a peg ?

When you can't eat you die.

My wife would have been dead since November of last year as that was the last time she had a spoonful of food orally.

My guess would be....

If you compare having a DPS (and can still feed yourself) with a PEG (but can still breathe) the life expectancy of a DPS alone is greater than that of a PEG alone.

I could be way off though....

 

[seaside]

Bowser,
your assessment that the value of last meal far outweighs last breath seems flawed.

 

[bowser]

Why are we even comparing this to a feeding peg ?

The two perform 2 entirely different functions.

What good would it have done to get my wife a DPS and not a peg ?

She took her last bite on NOV 2012,
She is still breathing w/o DPS

 

[seaside]

Bowser,
as far as I know there is no specific timetable nor a specific sequence for infirmities of ALS. Understandably, your comments are based on the specifics of your wife's progression. This is not true for every case of ALS. For instance, breathing can be severely affected, while swallowing remains mostly, if not completely, unaffected.

 

[zoohouse]

I suppose for each case it differs. Tim has no problem eating at all, and we know that his breathing is deteriorating quickly. It does not matter if he was being fed with a peg, when he no longer can breath, he has to decide whether he goes that way, or goes on a ventilator. We saw Tims' doctor yesterday, and she said that only 2-7% of all the CALS in Canada chose to go on ventilators. Statistics show that once a person's respiratory function begins to decline, it does so at a rate of 2-5% a month. Tim was functioning at 75% in July. I am not sure what percentage is required to sustain life, but a DPS can slow it down to .9% a month, and in at least one person on this forum he has remained at 46% for 18months with it. Tim has not decided yet whether he will be ventilated when his function is too low, but if we can postpone the need for a ventilator it would be a blessing.

I must say we did not see this coming as Tim's weight is excellent, and his voice and speech is unaffected. We have seen a fairly rapid decline in his ability to move, but thought it would be bulbar disfunction that would indicate breathing problems.

 

[Jeff Long]

zoohouse,
Don't you hate it when someone says "I don't want to butt in" -- and then they do?! Well... I don't mean to butt in;however, I think it's important for you and Tim to make a decision on the vent as soon as possible. I know, it's a sucky thing to have to talk about, but if he were to be admitted through the ER he may be vented as a life-saving measure. Subsequently, if he did not want it the decision to remove it may be all the harder.
Seems it would be better to have made the venting decision ahead of time.
Best of luck to you, and God bless.