Status
Not open for further replies.

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I just posted this one my web site.

This is a subject that disturbs me greatly. I find there are too many people who focus on the fact they are going to die. They are convinced they are dying and will die within a few months or years.

While there is that possibility, everyone has to die sometime, I still believe that ALS does not have to be fatal! This is also supported by medical professionals who I have come to respect. If we are willing, and able, to make use of the current technology available to us we can live indefinitely. The most common reason for PALS to die is from respiratory failure, so if you are willing to get a trache and vent death can be avoided.

I have discussed the subject of getting a trache, or not getting a trache, in another page so I am not going to expand on that here.

Lately I have corresponded with far too many people who have given up and are focused on their ultimate demise. (their belief)

They are devastated that they will not live to see their children grow, graduate, get married and see their grandchildren.
This does not have to be the way things turn out!


As I have stated above, if you are willing, and able, to get a trache and vent, a PEG (feeding tube) and use devices like a power wheelchair then life can still be fruitful and fulfilling. Life does not automatically have to be over!

Don’t let anyone tell you differently! It is entirely up to you. This is a choice you have to make and then never look back!

I am reading more and more devastating articles written by caregivers and family members than people who actually have ALS. They are destroyed by the ALS diagnosis their loved one has received and can’t quit crying. They are angry and extremely bitter. If you are a caregiver who is guilty of this then please stop and change the way you look at ALS. You have a great responsibility to be strong for the one who has ALS, focus on the positive and get on with helping them enjoy each day as best as possible.

There will always be “down” days and that is to be expected whether you have ALS or not, but don’t make this the norm.

I would also like to slap some PALS across the side of their heads for always being angry and not being able to rise above their depression. There is medication to help with this if it is a result of Emotional Lability.

Don’t believe anyone who tells you that you have to die because of ALS.

You don’t unless you decide you don’t want to continue living. That is another topic I have discussed on a different page.

Get on with Living and Enjoying each day to the Fullest. There is still a lot of Living to be done!
God Bless Each and Everyone of Us!
 

judylyne

Active member
Joined
Nov 18, 2007
Messages
66
Reason
Loved one DX
Diagnosis
10/2007
Country
US
State
michigan
City
rothbury
My sisters father in law was 59 years old. He was very healthy. never smoked. he had peg tube, and a vent . he fought to live to the very end. He only had ALS for 18 months.I think it's wrong to tell people that if they die it,s because they didn't fight hard enough.
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Thanks Joel, all of what you have said and the example that you set is a good reminder for all of us that we sometimes need to look beyond what we are told by the doctors and the statistics.

Never give up, never surrender.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
I thank you joel for your comments. we just found out on sept 3 2009 that my husband has ALS. we are being very proactive on his care, he is only 44, and has probably had this for a couple of years. we just didnt know what was wrong, and he lost his job last dec, and was trying to find a new job so he would have insurance. In just 5 weeks we have been approved for SSDI and VA benefits, Next week we will be getting Bipap and Peg set up, and already have his power chair. There is help out there everyone, if you are dealing with professionals that do not help you, FIRE THEM! and get someone who will help you. My husands greatest fear is that he wont see his daughter graduate from high school. She is a freshman, and I will fight to make sure he does. Hugs, Lori
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I'm still not ready to go casket shopping. I could, however use a nice set of bionic legs.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
My sisters father in law was 59 years old. He was very healthy. never smoked. he had peg tube, and a vent . he fought to live to the very end. He only had ALS for 18 months.I think it's wrong to tell people that if they die it,s because they didn't fight hard enough.

I am sorry you took it that way. I don't think that was what I said and it certainly is not what I meant. The exhortation was to not focus on dying and an ALS diagnosis is not an automatic death sentence.
 

peter57

Distinguished member
Joined
Jun 21, 2009
Messages
429
Reason
DX UMND/PLS
Diagnosis
10/2008
Country
AUS
State
S.A.
City
Millicent
Thanks Joel,
I understand what you wrote
(my signature reflects the same feelings)

Now Zaphoon i want a set too, dont care what size, or shape as long as they work:lol:

cheers
Peter
 
Joined
Sep 30, 2009
Messages
27
Reason
Loved one DX
Country
US
State
AL
City
Pell City
I know this is hard to believe for alot of people but some people that have ALS does not accept the trache because they think they are an inconvenience to their family. I know this is true because this is what happen to my mother. I have to admit that I still have anger in my heart because my mother wouldn't accept the trache . I wanted her to except it so bad. My step father was a respiratory therapist at a large hospital and he was hardly ever home. Mother told me that she thought he was tired of her being around, and I believe that is why she didnt except it. There was alot of personal reason's she thought this. I would have took care of her for the rest of my life because I loved her. So please don't feel this way if you have ALS go ahead and accept it because this is the way your going to keep breathing, the doctor told me that when your body says it is time to get the trache and if you get it you even feel better because your body doesn't have to work as hard to breath and you can think better, feel better and have more energy. Make the right decision for not only you but your whole family . You DO have family that loves you very much and want you around as long as possible.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Whilst the sentment is very good and I agreed with it during my first year of living with MND, as has been said before, everybody is different. I mean that, as far as symptoms is concerned. I had a positive attitude for my first year, then suddenly things went downhill. Now my days and nights are full of pain, despite medication. I am totally frustrated, as I guess most of us are. One persons mnd is not the same as anyone elses. My husband and family do a great job of looking after me, my doctor and carers are very good, but I dont want to live like this any more. My right hand and arm are just useable, I dread to think what life will be like when they go.
 

pvale

Distinguished member
Joined
Apr 15, 2009
Messages
106
Reason
PALS
Diagnosis
08/2009
Country
US
State
NE
City
Lincoln
Can't help but think about it at times. I am recently diagnosed, my wife is a renal failure patient on dialysis. They won't give her a kidney transplant because I am in this shape and couldn't be an effective caregiver. My next sister younger than me is an RN, and is trying to get things set up for me for a move to NE. Sister is convinced that wife won't be able to give me 24/7 care needed for trache/vent. Very few nursing homes are certified to be able to take care of ventilator patients.

So, while I would exist on a trache/vent, it probably won't happen.
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
What I am reading from all of these insightful posts is that we are all different and that a solution that works for some may not work for all. Because each of us has a different progression of the disease, different life circumstances and different resources we need to keep in mind that we each have to decide what will work for us.
I agree with all who have commented and would like to say that what I take away from Joel's original post is that we need to try to keep an open mind about what we can do. Whether a trache and vent works for you is for you to decide, just don't rule it out because someone else says so. And don't just give up because someone else says you should.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Thanks Barry. I have said many times before that I realize this does not work for everyone and I respect that. We each have our unique situations that will dictate and influence what we do. I did not post that to upset everyone. I have read too many posts where newly diagnosed people are devastated because they were told they were going to die really soon. That is not necessarily true and I was trying to offer some hope that life does not automatically have to be over. I quite plan on dying of old age. I understand that life on a vent is not for everyone but for those who can adjust to it life can continue and be very enjoyable.
But, I still feel, regardless of your decision, that we should not focus on dying. That robs you of the joy you could be experiencing today.
 

MarianneS

Active member
Joined
Jun 8, 2008
Messages
64
Reason
PALS
Diagnosis
06/2008
Country
US
State
ma
City
lexington
Hello Joel,

I looked at the homepage for this site. It describes ALS as a "progressive and fatal nueromuscular disease". A newly diagnosed peerson, being told they have a fatal illness, is going to take that to heart. It is the truth, eventually, depending on the course of ALS, they probably will learn to live with it but not to forget that they are indeed dying from it. I think one of the great purposes of this forum is to support us on our journey and we all know where that will end.

Marianne
p.s. I hope you do indeed live to a ripe old age
 

sandradenise

Member
Joined
Oct 6, 2009
Messages
21
Reason
Learn about ALS
Country
US
State
al
City
mobile
Thank you Joel! I was down about not being around my family and watching them grow in every way. You helped me to realize that my love for my family will only grow stronger and will help them grow stronger too. I will be able to show them to have courage to take on anything life has to offer. With all the technology now I could maybe even go fishing still, uh !

Before , during and after each hurricane we have family and friends and neighbors all come together and help each other. This is true with most situations. When the time comes I will have to educate them on what is ALS. ASk for help not their pity.

I am afraid of asking and being rejected, but I have to believe now a true loved one or friend would not reject if they could help. Not to put anyone down but some people are just plain afraid of seeing someone else sick. They do not mean any one harm it just scares the life out of them.

Sorry , back to what I was thanking you about. You brought me back to reality and thank you again.



Sandra
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
"progressive and fatal nueromuscular disease".

That is old school thinking and there is a lot of talk about changing it.
One of the reasons they are hesitant to change the wording is because of insurance and disability payments. With it being classified as a terminal illness there is no contesting benefits.

Also, technology has advanced since that definition was created. A lot of things are possible today that were not available a few years ago.

I know I am in the minority as there are only about 5% that do what I have done. So I have always experienced a lot of objection. But times have changed and I would like to see that statistic change. There are a lot more than 5% of us that are in a position to trache and vent.

Living with a trache and vent is not what the average doctor will tell you, it is quite easy and enjoyable!

I am not ignorant of the challenges surrounding what I have done. We had to move 450 miles to a major center. That is a whole other story but don't fool yourself into thinking I have had it easy. I had to fight hard for what we are enjoying today. If I could do it so can many others.

Don't give up without a fight. God Bless you all!
 
Status
Not open for further replies.
Top