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bossman

Active member
Joined
Aug 26, 2008
Messages
49
Reason
PALS
Diagnosis
07/2008
Country
CA
State
Ont.
City
Hamilton
don't know how long I can last with this ALS. I can't lift my arms can hardly eat walking is getting so hard for me to do. I can't so many pills for pain and to relax. My muscles, but they don't seem to do any good. I can not sleep in my bed anymore. I have to try to sleep in my power chair. Even using their computer is very hard. I can barely use the mouse and my Dragon program makes a lot of mistakes, because I cannot talk proper. I'm getting to the point where I just want to crawl in a hole and die. If any one can help please let me know
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Bossman,
I'm so sorry to hear things are difficult for you. You were so kind to respond to my post about my husband's progression.
You obviously have people who care about you since they are having a fundraiser for you. Please don't give up!
You are in my prayers.
I am here to talk if you want.

Linda
 

sdsyd

Distinguished member
Joined
May 22, 2008
Messages
329
Country
US
State
sd
City
piedmont
hi bossman. I wonder about you often. I am so sorry for all you are going through, but this is a place where you never have to feel alone because SO many people here have this dreaded disease. I will be praying for you.

Love,
Cindy
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Bossman, I think about you, too ... a lot ... and worry when we dont hear from you.

Have you talked to your neuro about how discouraged you are? We shouldn't have to fight ALS plus depression ... it takes all our energy to deal with ALS. Ask your doctor if he/she can give you something that will treat your depression. You need all your strength for dealing with ALS.

I'm praying for you.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Bossman,

Thank you for taking the time and effort to communicate with all of us on this forum. As mentioned with the others, I often wonder how you have been doing.

Having increasing difficulty with eating, sleeping, communicating (etc...) aint no picnic but please don't let this thing keep you down. If you can access some good, upbeat music (the stuff that got your juices going when you were younger), crank it up! This is one way to get your mind off of the disease.

If you have some good comedy DVD's, put them in and let yourself laugh your butt off for a bit. As hard as it may be, try to find some humor in this tragedy. The key is mind shift. I know, easier said than done...

I'm pulling for you, Bossman! Kick this thing with some attitude!

Zaphoon
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi bossman. Sorry you're having problems. I got programs from the OT and Assistive Devices clinic at Sunnybrook. Mac should have the same. I have Tracker Pro that is a movement tracker and on screen keyboard. I use Dragger 32 which is an auto click program for your mouse. I got a hospital bed on loan from ALS Ont. It has a fancy holed thick foam mattress that works pretty good now. It's the third mattress I've had as I progress. There's a lot of stuff out there, you just have to know who to ask.

AL.
 

LOUIS

New member
Joined
Mar 18, 2009
Messages
2
Reason
PALS
Diagnosis
12/2008
Country
US
State
AK
City
CRAIG
Please reply,
my friend is new to this, say hi too louis!

He needs a few smiles, please! He was diagnosed in december 2008.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Louis. Welcome but sorry you had to come looking for us.

AL.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Hi bossman...you know we mean it when we say we understand and most of us have been there at one time or another..I have just had a week in bed with a bug, maybe from my little grandson plus a chest infection..did not eat and hardly drank for 3 days..and I have kidney problems as well as this crap..I felt SO weak, and one day did write to my husband, just let me die... It sounds like you are similar to me in where you are with this...my legs are on the borders of not working any more, left arm is giving up and eating drinking is now difficult....BUT somehow we have to get over this hurdle, one day at a time....with as much help as we can get. I keep reading about feeding tubes and dont want one, but the inevitable will happen, how are you with that...maybe that will help with one problem if you can get that sorted out...everyone says to get it sorted out early, as with oxygen...wish I could take my own advice on this, I am also fighting doing either of those 2 things. Pain and sleeping..yes I am in that place as well, will be seeing neuro on friday and asking for help with that.
Keep posting and ask for help, even if it is only emotional, you KNOW we are all going through pretty much the same, so can totally understand where you are. We all need that emotional support to get through each day..we all need each other....please use us...(and now I need to read this reply and take note for myself!) We are here for you.
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Hello Louis; Welcome. I'm sending smiles your way.

bossman and Jennifer, don't fight the tube. So far I have no trouble breathing but eating is so difficult that I often just give up. When the clinic first mentioned me getting a peg I said that I didn't want one but thanks for asking. Eight months and 40 lbs lost later I changed my mind. Of course after changing my mind I was on a waiting list for a couple of months before I could get it. While it's a bit uncomfortable at times it sure helps me get the nutrition I need and I'm not hungry all the time. Everyone knows how much better life is with a full tummy!

Barry
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Thanks BarryG...I know you are right, I guess it is just the same old thing, we have to get used to..firstly the possibility of what we have, then the diagnosis and then every weakness and problem that arises..each stage we have to get used to a different way of life..I am an optimist normally and keep thinking I can beat this thing, hence the need to fight all the aids.. but I KNOW you are right..just have to get my head around it. Thanks
 

JamesMcC

Distinguished member
Joined
Feb 2, 2009
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
idaho
City
V
Hi Bossman,
You are in all our prayers.Yes put on some funny comedy and have a good long laugh.You are here with us,Alive! We are all thinking of you and those who are not feeling so good emotionally.It is hard but don't give in to it.God's angels are with you always.
Take care and talk to us here.
J
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
To anybody debating the tube, I agree with Barry. It's the easiest "fix" I've found in ALS so far. I've finally stopped the weight loss and gained a couple pounds again ... and it is SO MUCH easier than trying to eat regular food. Cheesh ... 45 minutes for one slice of toast ?!? Not including choking time.

The tube is 5 minutes and it's done and forgotten, and being able to mash up pills is a huge help too. It actually "solves" one of the hardest problems in ALS, i.e. getting enough nutrition. And it's low maintainence.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Hi Bossman... so sorry for how things are going for you. We care so much and hope we can help somehow.

Have you considered all the "helps" there are out there mechanically? You didn't say you had a Cpap or Bipap for better sleep... or that you could wear it even in the daytime. Have you considered a peg tube or have one for feeding? ...... and the speaking machines or assists to use the computer? Have you considered meds for depression and panic, to ease your journey? Please keep relating these things to your doctor, as there are many helps out there. Affording them is no problem either, as there are so many foundations that loan or sell cheaply.

Could you sleep in your recliner or get a bed that the head raises up? We have one so Rick can breathe better. He sleeps at a 45 degree angle with the foot raised too. When the time comes, please consider Hospice, as they are SO kind and have numerous ideas for your comfort.

We wish you hope and luck and prayers and compassion and all the rest. Hang in there!
 

Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
City
Smiths Falls
Hi,
I'm sorry that things are not going well. My wife, who has ALS, went through the same emotions you are going through......and I went through a difficult time as well. It's true that you should not be going through the challanges of ALS along with depression. Please see your family Dr. or Nuro. My wife did and they prescribed some anti=depressants. They worked. As difficult as this may sound you must keep a positive attitude. As tough as things are there are still people who care and love you. My wife is now on a vent and we live with the hope that one day soon they will find a cure for this terrible disease. Remarkable research is now going on with stem cell's in North America. This provides us with hope. Please stay strong, for yourself, your loved ones and for all of us who want the best for you.
Mark
 
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