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Eponine

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Joined
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Messages
18
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CALS
Country
US
State
MA
City
Springfield
Hello,

My dad was diagnosed with ALS in July. It's been a rough couple of months. He has gone downhill quickly. He is in a wheelchair more and more (he is going for a wheelchair assessment at the end of the month for an electric one)

We went to the Lahey Clinic and they reconfirmed the diagnosed. My dad's spirits are ok, on and off. Emotionally and mentally it has been exhausting for everyone involved.

My dad has decided not to get a feeding tube or a bipap machine to help him. Upon his wishes, we have canx several dr appiontments.

Since the beginning of the year, he has lost the mobility in his left arm, his right arm has very limited mobility and his legs are almost gone.

At this stage and the quick degression, and with no help later down the line from a feeding tube or bipap, how long could he go on?

I would guess that if those who don't have a bipap machine generally die in their sleep?

His breathing is ok and he hasn't starting choking on foods or anything like that yet. I guess the breathing worries me, especially considering in December we were all at Disney World enjoying a family vacation.

Thanks for your help!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Eponine. There is no telling how long he will last without Bipap and a feeding tube. I needed a Bipap about a year and a half after DX and some others don't need them 5 and 6 years into the disease. Bulbar symptoms don't always show up at the start either. He could live a long time the way he is, relatively speaking of course. He may change his mind about his options later. I know I have. I believe I read somewhere that 80-90 per cent of ALS patients do die in their sleep. Not very encouraging but better than a face plant in the mashed potatoes at Christmas dinner. Sorry at my attempt at humor there but I'm just like that sometimes. AL.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Hi Eponine Bipap?

Welcome to the worst club on earth, but we all love it, the forum that is not the ALS. I hope you can feel at home here and get answers to your questions and feel the love and support of the group. By the way I was DX on May 11, 2006. I am in wheelchair most of time now.

At first I had decided not to get a feeding tube, until I spoke to people here on the forum and to my Neurologist and she sent me to a doctor who inserts the feeding tubes. I thought it would go down my throat and be like being on life support, not true at all. The feeding tube is put in the stomach and out the belly somewhere and you can even get what's called a button type that is flush with the skin. I was also told if I did not get the tube, dying by starvation is slow and very painful and I'm a sissy when it comes to pain.

It would be worth your time and for your husbands information to do a search on the web and see if they show this procedure. It can prolong his life where he can spend more time with his family, who knows maybe 2 to 4 years? You can also use the search link above this message and just put in feeding tube to see what others have said.

It's an individual decision for each of us to make as to what treatment we decide to have or not to have and I respect any decision he makes. After all it's his life. It's good though to get all the options before making a decision.

I have lost 30% of my lung capacity so I have been on a BI-Pap for a few months now. I just use it while sleeping. When I lose more capacity I will use one all the time. I have already been to the doc to plan getting my feeding tube and most important I have a do not resuscitate Living Will. I've made out my regular will and prepared as much as possible for everything that will be needed when I die.

I have been told by my doctors that if I quit breathing my wife is NOT to call an Ambulance. Seems we have a law here that if you call an Ambulance the attendants HAVE to resuscitate you no matter what your living will says. (DUMB LAW I THINK)

Anyway you may have already considered all these things but perhaps someone else who reads the forum has not and it will help them.

God Bless
Big AL
 
Joined
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Messages
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Reason
Loved one DX
Country
US
State
Michigan
City
Grand Ledge
HI -
Just reading your message and seeing you live in the same state as Mom&Dad. I am brand new here. Mom just diagnosed with als...still don't have all the details yet - next appt is 10/05/06 to get all details. Any info on Mississippi law would be helpful. My parents aren't ready to deal with anything yet but I would like to get all the info I can to help them prepare, as I live in Michiganand can't be there. Thanks for anyting you have to offer.
 

Eponine

Member
Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
Hello Everyone,

Thank you so much for all your information. Al, that comment was funny :-D We all have to add some humor to get through this. Plus, I told my Dad it's not a convenient time for him to die yet, I have tickets to some Broadway shows coming up, then the holidays. I told him I'll let him know when it's ok :)

Big Al -- thank you for the information. I have told my dad that the feeding tubes are not like the ones from years ago. Maybe he will come around. I'm sure he is scared right now (we all are).

Angelbaby'smom: I live in Massachuesetts, not Mississippi, so I'm not familiar with the laws in that state (let alone the one's in MA).

Thanks again for everyone's support.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Do not resuscitate?

I was referring to the laws in Mississippi from the quote below. You might want to check on your own states law.

I have been told by my doctors that if I quit breathing my wife is NOT to call an Ambulance. Seems we have a law here that if you call an Ambulance the attendants HAVE to resuscitate you no matter what your living will says. (DUMB LAW I THINK)

God Bless
Big AL:)
 
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