Newly diagnosed

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Shirlyanna

New member
Joined
May 3, 2014
Messages
3
Reason
PALS
Diagnosis
04/2014
Country
US
State
Tn
City
Knoxville
I was diagnosed 3weeks ago. I am trying to continue my usual activities for as long as I can. I get really tired and yawn a lot. Should I push myself to continue or is it better to rest more? I am pretty clueless at this point. I appreciate any help, suggestions or comments.
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
675
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
always rest when you feel the need, otherwise the next day is even harder. in other words pace yourself not push yourself
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
With ALS you have a finite amount of energy, and when you use it up it is done. Use the energy you have for the things you absolutely want to do. If you push past that you will go into a negative balance and the next day you will be wasted. So sorry that you have joined these ranks, but this is a great place to get ideas to cope with this disease, and just plain old emotional support from people that know what you are going through. God bless you.

Paulette
 

dalvin

Senior member
Joined
Sep 12, 2013
Messages
954
Reason
PALS
Country
US
State
va
City
richmond
One of the hardest things for me to adjust to was asking for and accepting help with things I had always done myself. You have to think safety all the time. Example: because I'm unsteady on my feet and can only manage about a minute, I had to get help cleaning my house. Hard to sweep and mop the floors when your laying on them after falling. What I'm trying to say here is don't push yourself to do things out of pride. You'll only make things worse. Do what you can and what you enjoy but don't sacrifice safety.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>I was diagnosed 3weeks ago .... I appreciate any help, suggestions or comments.

in my experience, it took me months to begin to understand my (our) situation. Give yourself time.

FWIW,

Max
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Shirlyanna, so sorry to have to meet you here, but so glad you chose to join us! Great compassionate people with solid advice to aid you through your journey.
My Barney decided he was going to beat ALS and started to do a strenuous work-out regime and because of the FTD part of his ALS would not listen or could not understand the harm he was doing. I asked his specialist and she looked at me and asked something like "what is he hurting?"
Easy does it!
Hugs
Linda
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
> I appreciate any help, suggestions or comments.

the other really important thing is to be careful not to fall. it sounds simple, but a fall can really set you back.
 

Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
I worked for about 4 months after my diagnoses, I didn't think I could afford to be on disability, now I wish I had retired as soon as I was diagnosed, I have a lot of doctor bills that medicaid would have paid if I was not working, rest and enjoy your life.
 

Patchesgus52

Active member
Joined
Apr 1, 2014
Messages
56
Reason
PALS
Country
US
State
Fl
City
Margate
I am also new.i yawn 50 times a day. Usually in spurts now that I am talking about it of course I started to yawn. Asked sleep doctor he had no clue why. Also do things slow when you get just a hint of tiredness stop. I like most us learn the hard way on that one. Ask for and accept help. Take care
Patrick
 

Patchesgus52

Active member
Joined
Apr 1, 2014
Messages
56
Reason
PALS
Country
US
State
Fl
City
Margate
Just one more thing it takes awhile to sink in that I DO have als. In fact I am not still completely done with the accepting process. But I am getting close
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>I am also new.i yawn 50 times a day.

did they put you on Baclofen? It made me tired and yawn at first ...
 

Patchesgus52

Active member
Joined
Apr 1, 2014
Messages
56
Reason
PALS
Country
US
State
Fl
City
Margate
Max no, I am not taking any meds. I stop the expense one that starts with a R. Yawning just started a month ago no big deal to me. But when it happens everyone around starts too. You know how that goes, one yawn everybody yawns. Take care
Patrick
 

Patchesgus52

Active member
Joined
Apr 1, 2014
Messages
56
Reason
PALS
Country
US
State
Fl
City
Margate
Plus it is not my normal yawn every muscle tightens up and my arms and legs shake.. My wife thinks it's cute..go figure
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>Plus it is not my normal yawn every muscle tightens up and my arms and legs shake.. My wife thinks it's cute

Wives! :)

When I yawn, I get cramps in my throat and can't breathe. I have learned to suppress them.
 
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