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themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
I don't know how to explain it - but Michael always had the most beautiful set of blue eyes.
Something has happened in the last month to turn them from beautiful to strange looking. Like a glassy eyed blank stare. Don't know if its the meds - or the fact the disease is affecting his brain so horribly. We went to the bank and he got confused - tried to put the number off of his bank card into a blank deposit ticket. Then he panicked because there were more numbers on the card than the routing and transit number. From there it went from panic to full blown OCD behavior. Maybe his attempt to control a situation that is clearly out of control.
I hurt for him. Its hard to watch. I listen to the subtleties in his voice and watch how his face is changing...Nothing drastic....just nuances that are different...warning of the things to come.

He is not the person I knew two months ago.

The disease has affected his breathing. Last month it was only the left side that was diminished - now its both. I know we are on the fast track - but its hard to be a part of this all...Some times I just want to run away and leave it all behind. I cannot talk to him about it - because he has become child-like in some ways. Incapable of understanding things when I say them to him. Then it is repeat it - and explain it - repeat - explain...until I am just exhausted - and wishing I hadn't said anything in the first place. So I keep it to myself and press on...Chin up - trying to fix the broken pieces left over from the disease with my kids and my life.

I hate this disease with all my heart. I have a gentle spirit and yet - this disease brings out more hate than I ever thought I could own. Everyday brings another set of problems. And another set of hurt and pain. ALS sucks - FTD really sucks.....
 

cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
I am so sorry for what you are dealing with. ALS truly sucks...it damages all who have it and all CALS. Hang in there, this is a good safe place to vent and share.
 

jamiem

Distinguished member
Joined
May 4, 2012
Messages
147
Diagnosis
08/2012
Country
US
State
TX
City
Mabank
Sending Prayers and hugs to you today. Just know we are all in this together. Feel the virtual hug! Jamiem
 

DeansWife

Distinguished member
Joined
Oct 18, 2011
Messages
196
Diagnosis
08/2011
Country
US
State
AL
City
Fairhope
A Big cyber hug for you, make it two - you need it. {{{{HUG, HUG}}}}
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
Thanks guys. Its hard. His voice is so gravel-ly - people ask him how many cigarettes a day he smokes. The funny part is - he has never smoked. They just don't know.
It just sucks. I don't really want to vent - I just need to know that there are others than can understand. This disease is so rude and unforgiving...
 

Jennifer D

Active member
Joined
Dec 19, 2011
Messages
74
Diagnosis
03/2012
Country
US
State
New York
City
New York
So sad that you are going through such a rough time........My heart goes out to you and your family!

Remember we are all living in the same ALS nightmare and we all need to vent & rant and rave, who the heck else would understand us? We are here for you. Sending you lots of hugs and good thoughts! I pray that tomorrow will be a better day!
Jennifer
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
985
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
Love and Hugs to you, we are right here with you and we know..believe me..
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
I wish that I had some magic thing to say--but you sound like you have way more to deal with than any one person should have to and you have to me crazy strong. I am so sorry you guys have to deal with this so fast and so sorry for your pain and your husband's suffering. We all love you here--remember that we are all here for you any time you need us.
 

rachelg

Distinguished member
Joined
Apr 14, 2009
Messages
226
Diagnosis
05/2009
Country
UK
State
Somerset
City
Yeovil
Hi mommy

So so sorry you are dealing with all this.

Eyes - ok - not quite sure how to explain this. Do they look almost hollow? As if they dont see anything. Do they seem to work in slow motion. Do they not even seem to be able to look straight at you? Do they at times stare at nothing and when you speak to Michael its like he doesnt quite manage to move them towards your voice. If you get close to his face and ask him to look at you - do his eyes gradually find your face?

The reason I ask is because this happens to my Mark when he needs to go on vent. The respiritory nurse says this is his brain gradually muddling because his oxygen levels are dropping and Co2 is building up. She said everything goes into slow motion for him making response slow. Do you think this could be the cause?

When Mark then goes on vent its like the world comes back into focus, his eyes come back and his face softens and his reaction time returns to normal.

This disease is evil - truly hideous.

Thinking of you
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
RACHELG - YES! It is a strange strange look.Yes they seem hollow and distant. Yes! His eyes are blue and they get almost "foggy" for lack of a better description! He gets really slow in reaction time...Can't focus. Can't follow what you are saying. And then he will try to "fake it" like he understands and comprehends you - but when pressed - he really doesn't.

THANK YOU for sharing! It is disturbing - you don't really know what is happening "behind the scenes" if you will. Its hard to know all the physical issues and what to look for. Thankfully there is this forum. I wouldn't know what to do with out this place...There is no one else that understands the emotional, physical and just heartwrenching effect this has on everyone who is surrounded by this disease. If it were a dragon - I would stand on a mountain top and slay it!
 

Pandora

Distinguished member
Joined
Apr 30, 2011
Messages
130
Reason
Lost a loved one
Diagnosis
01/2011
Country
US
State
Texas
City
Crowley
This is the best place to let it all out! I have said the craziest stuff here and rambled and always found everyone helpful. If even just to say, yeah i have been there.
 

minnesota

Distinguished member
Joined
Mar 7, 2010
Messages
189
Country
US
State
MN
City
Coon Rapids
I'm glad you shared. We're here for you!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
I thought Rachel's response was very good--is your husband on a bi-pap? perhaps you need to get him a pulmo checkup and get on one to help.
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
Interesting Barbie you should mention the BiPap...yes we have one - and a cough assist. It sits covered in Plastic in the spare room. He uses it once every blue moon...Michael is in denial that he has ALS. He thinks he has it in his hands and arms - but can't admit that it is coursing throughout his body. However he is UMN prevalent. Hence the fast track. The Dr's have told me he may never become completely paralyzed and wheelchair bound. The two items of main concern for any PAL is brain and lung atrophy... Micheal has FTD and won't take the drugs to help with the confusion factors. Absolutely refuses. And he won't use the BiPap. Which is causing his lungs to atrophy...Sometimes I wonder if he wants it this way, but can't bring himself to tell me about it. So here we go...welcome to Mr. Toad's wild ride.
 

dberbicegirl

New member
Joined
Jun 11, 2012
Messages
9
Reason
Loved one DX
Diagnosis
01/2012
Country
US
State
MARYLAND
City
SILVER SPRING
I wish I could make the pain go away. I never thought in my life that I could feel so helpless about something (ALS) and helpless for everyone diagnosed, including caregivers like myself.
 
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