I'm new and would like to talk to people who understand.

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daigs

Active member
Joined
Jan 28, 2013
Messages
31
Reason
PALS
Diagnosis
11/2012
Country
US
State
MA
City
Grafton
Hi Anne
I'm so sorry you have to join us here. I am new here as well and have gotten some great support on difficult days. It's great because everyone here understands your thoughts and feelings. I hope you have doctors that really understand the disease. We are here for you!
 

celticgirl

Active member
Joined
Mar 3, 2013
Messages
90
Reason
PALS
Diagnosis
09/2012
Country
UK
State
Lanarkshire
City
Glasgow
Hi all, many thanks for your words of comfort :) I am glad of the wonderful support, just a pity about the circumstances. At my respiratory appointment on Friday I was distressed to hear I will need a machine to help my breathing at night, trying not to read too much into it ! My other problem is i live in a flat with 46 steps leading up to it, In the process of trying to get the council to rehouse me but It's taking forever ! Hope you all are doing okay? love and hugs, Anne xx
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
I saw a member named rhuraidh that is from glasgow. You might want to contact him. You had said you did not know anyone with als, well he is your neighbor. Good luck. Hugs
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So sorry to hear about the breathing difficulties. Many of us have gotten used to the BiPap by using it during the day for increasing periods of time while reading or watching a movie.
Good luck
 

bob_s

Active member
Joined
Nov 13, 2012
Messages
96
Reason
PALS
Diagnosis
11/2012
Country
US
State
Missouri
City
St. Louis
Anne,

I'm sorry everything is coming at you so fast. A breathing machine such as bipap will help you sleep better and have more energy during the day. I've just started to lose some lung capacity, so my doctor says I don't need a bipap yet. But I think of it as a comfort measure.

Bob
 

celticgirl

Active member
Joined
Mar 3, 2013
Messages
90
Reason
PALS
Diagnosis
09/2012
Country
UK
State
Lanarkshire
City
Glasgow
Hi Vicki, how are you today? Hope you are feeling okay :) you were saying Ruriadh is my neighbour, do u know his user name ? I would like to contact him . Thanks Vicki, love and hugs Anne xx
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
Rhuraidh is his name. I am doing okay. How are you doing?
If you go to the top of the main page and click on community and go to members list you can find him.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
**** deleted, completely inappropriate *****
 
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Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,866
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi Anne
I am so sorry for post #23. Please try to ignore it if you can. ALS is a deadly disease we all know that but none of us can know the course it will take. Some people live much longer than 5 years. I know a man who is 21 years post diagnosis and has neither bipap or feeding tube. His diagnosis has been re confirmed several times as ALS. And There are some very brilliant and dedicated people searching for treatments and cures. I do think the identification of genetic defects will lead to success. Just wish they would hurry!
Best wishes
Nikki
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,866
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi Anne
Got moderated! Please try to ignore post 23! No one knows how long we have!
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
Shame on you hanginon, everyone on this site knows the result of a als diag nosis, but you don't need to be so blunt and crass about it. If you have nothing nice to say then go away until you do.

People come here for hope, compassion and friendship to help them through their journey, not fire and brim stone and doom. Go away until you can be more humane. Everyone knows you are grieving for your wife and that you cared for her deeply and showed compassion and love then. You need to go until you can show that sort of compassion again. Shame on you.
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
831
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
City
Anne Arundel Co
"Hangingon1",

People are not dumb and, everyone knows what an ALS diagnosis entails.

Although, the fact of repeating the same, the same and, the same like a broken record on every post doesn't make any good to you nor the new PALS.
I know it must be hard to lose a loved one to this dreadful disease but, we need to grow in spirit and move on with our lives and try to live each day to the fullest as if it was our last day.

How many people go out there and die tragically in an unexpected and unforeseen car accident? Should they be sad and depressed beforehand because they could die?
The same for ALS. It is true, there is no cure. It is true, it's progressive and won't stop progressing but, should PALS lay in bed and do nothing but just wait until they die?
Of course not.
They have families that love them, so they have to make every day count and try to live the best they can.

I know there is no cure for grief but, you need to grow in spirit and keep living, keep breathing, and try to put these things behind. I bet your late wife wouldn't want to see you grieving her for the eternity. She would want you to choose life.

You mention JesusChrist in every post, but...Would He like the message you are spreading if He was here with you?
Jesus always tried to give a message of hope to people and put over His shoulders our sins, so we could move on.
Just try to spread what Christ wanted, love and hope.

Thanks.

NH
 
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celticgirl

Active member
Joined
Mar 3, 2013
Messages
90
Reason
PALS
Diagnosis
09/2012
Country
UK
State
Lanarkshire
City
Glasgow
Hey nighthawk, your reply to hangingon was very true, unfortunately we all know this terrible disease will claim us, just don't know when. we need to keep living our lives the way we always have! I for one intend to keep fighting ! We all have people we love and who love us, we owe it to ourselves and them to stay as positive as we can :) , love and hugs, Anne xx
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
Hi anne,welcome though i'm sorry you find yourself here.
There are a few of us uk lot here most with als/mnd though i have pls/mnd which is even rarer.
I'm sure you will get a chance to talk to them at some point.
Anything we can do to help just let us know.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hey CelticGirl

(I love anything Celtic--and am actually incorporating Celtic stuff in my new book)

We all hate that you need to be here--but are very glad you found us!

While the prognosis isn't exactly great as another member felt the need to point out, it doesn't mean that you can't live each day to the fullest...and no one can say they won't find a treatment or a cure.

With so few people in Scotland with ALS--I'm glad that you were at least able to find a doctor that knew the disease well enough to help you.

Try to look at the bi-pap as a way to help your energy levels. Low o2 saturation (with is why you need the bipap basically) can lead to exhaustion -- and the bipap should help with that! One of our members had his bipap for years and years (more than the 3-5 Hangingon listed, believe me!)

You will want to get somewhere without 47 steps--Lord, I can't imagine walking 47 steps before my legs got weak--now it would be a nightmare!

Falls are a huge challenge--take advantage of things like AFOs that held with drop-foot and walkers or canes or even wheelchairs if you need to conserve energy.

HangingOn is WRONG in terms of statements such as "nothing will help--not range of motion" etc. Range of motion will not only help keep your joints functioning, they can also help with cramps and spasms--keep the muscles working as long as they are able to work.

As a backstory--he recently lost his wife to ALS--and I think he's a very bitter, unhappy man--which is understandable--but the fatalistic attitude is less than helpful to anyone--let alone one with ALS.

It's great to remain positive! Our mental outlook plays a role in our physical being (in terms of energy and the like)

Most here choose to LIVE with ALS...it's kind of the unofficial motto! Nighthawk has it right, as usual!

I was told over a year ago that I'm dying. I haven't even told anyone here--or my daughter--but I know it every minute of every single day. And it's not ALS that's going to kill me, it's lungs that are too badly damaged to function and congestive heart failure. I know it--I live it--but that's the point--I LIVE. TODAY I'm alive. That's all any of us have--each minute of each day--we can either choose to spend that time living or we can spend that time dying. I much prefer to live.

Like those with ALS, I'm going to die from respiratory failure--but I don't have a freaking expiration date on my chest--nor do PALS. Keep that in mind, HangingOn. Your posts are depressing and not at all hellpful to anyone--least of all to YOU!

Please see a grief counselor, or talk to you pastor. You believe in God, obviously--let him be your strength when you're weak. Please consider what you type before you hit "reply".
 
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