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LisaM

Member
Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
City
Los Angeles
Hello,

It's been 3.5 years since my dad started noticing symptoms and about 1.5 years since he was officially diagnosed. At this point he is unable to use his legs and his arms. No need to outline the changing struggle for both he, and my mom and I who help take care of him, everyone here is all too familiar I am sure. We do the best we can every day.

Now I am at the next new juncture I suppose and feel clueless for the first time ...

For the last few months he's been coughing when he drinks (sometimes eats) and his inability to speak more than just a couple words is clearly noticeable. Tonight he went to call my name and nothing came out for the first two tries. Ironically, I have been watching Stephen Hawking's interviews recently which brought a mental picture to my mind along with two patients I encountered at the hospital for the first time (i'm a medical social work intern) who were unable to speak or move (not ALS related) which only added to these mental pictures - I guess these are the signs for me to wake up and start paying attention again.

A few months ago the pressure became too much for me so I sort of stopped paying as much attention and just went through the necessary motions for his care without thinking too much.

Here I am now and I am really scared for the first time and don't know what to expect or do anymore. I'm picturing him as a prisoner in his body, especially if the little motion he has in his neck and right fingers (enough to push his electric wheelchair joystick if his arm is positioned just right) disappears. His vitals and organs always test so healthy, doctors always say that his test results are better than theirs. In a way I am scared that he is going to live a long time as a person who can't move or talk and it seems so torturous to live like that. I hope this doesn't sound cruel and that I am being able to express my thoughts and fears accurately.

I guess my question is What do I expect these next steps to look like? And how do I prepare for a day when maybe he wont be able to speak to make his needs known? Is there something i should be doing or thinking now? I help people with hard medical situations and can't seem to help myself or my family...go figure. In my defense, this situation is still by far the hardest of anything I have seen at the hospital in the last 6 months of interning there.

Any thoughts would be appreciated

Thank you.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Sorry about your dad. There are devices he can use that will speak for him. Get ahold of you local ALS Association and they should be able to help you out and maybe even provide the equipment you are going to need. Lots of PALS use these devices and live a full life.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Hi and welcome, Lisa. You have come to the right place for support and a listening ear.
So sorry about your dad's condition. Yes, I find on this forum, many places where speaking devices are being used or advised. Also there is the preliminary idea to make flash cards for the patient to point to, or motions like sign language.

You sound like a wonderful, caring daughter, and I just know he will do well with your love and care. God bless you in the days ahead.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Welcome, Lisa ... you're doing exactly the right thing ... thinking ahead. Have you contacted ALSA (ALS Assoc.)? They are a terrific bunch of people who will counsel you and help you see what's coming around the next curve, and the one after that. It really helps to understand early the challenges you may face in the days to come, and be prepared.

As a caregiver, remember to take care of yourself, too ...
 

jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
Hi Lisa

Sorry about your Dad. Its very hard thing ALS I have had it for 18 years and I cant move much any more I cant eat I have a feeding tube for 3 years but I still love life what I'm saying that some people well adapt to there life with ALS I don't know your Father but I know my kids got me thru this with my love for them that is what gives me my well to live so give your Dad all the love you can it well help more then any Doctors can. Now about device I'm using a eyegaze wright now that's how I'm typing now and you can turn lights on and off/tv/ridieo it does alot so check it out at eyegaze.com
well got go oh if have more to ask come to http://alschatroom.com there is a lot of people that can help you and your Dad.
GOD BLESS YOUR FAMILY
John
 

smith.ross

New member
Joined
Jan 21, 2009
Messages
1
Reason
PALS
Country
US
State
Alaska
City
Juneau
Self Improvement With Hypnosis

There are some good resources out there. One I came across recently was on a lot of topics related to better living with hypnosis. You can sure give it a try. Here is the link . I also noticed that they are offering a free mp3.
 
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Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I don't think we can hypnotise ourselves into not having ALS. This guy had more stuff for sale than Walgreen's. We don't allow advertising here. I really wish new members would look around before posting.

AL.
 
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