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catcaniac

Distinguished member
Joined
Dec 11, 2010
Messages
188
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
North Carolina
City
Sneads Ferry
April 10th. This morning around 9 am, my husband reminded me by pointing at letters on a sheet of paper while I held his left arm, that today marked the anniversary of his grand mal seizure exactly one year ago. This date will forever be marked in our minds as the day when our lives would never be the same again. Prior to that day, Eric never complained of being tired or sick. He didn't even get the colds or flu viruses that I often brought home from my students at school. Our biggest worries in the world were what in the world we would choose to share together for our nightly dinner enjoyment. It wad the first time in my life that I had ever called 911. Eric stopped breathing that day and I had to use my former lifeguard training to restore an airway to get him breathing again. From that day to this....we have been in the fight of our lives. It is hard to imagine that just one year later, I would be sitting here on the bed, waiting to interrupt this message to suction my husbands saliva for over the hundredth time today. One year ago, he took not one daily medication. At 9 pm, I pumped him full of Zantac, Lamotragine, Clonipin, Oxycodone, and Senna, not to mention the shot of Lovenox this morning in his stomach. He had 5 different visitors today with no other communication than an occasional thumbs up with his ever important left hand. his heart rate has been racing upwards to 140 today and he has been choking and gagging most of the afternoon. Our bedroom now includes a Hoyer lift, ventilator, 2 suction machines, Pulsox, oxygen, back up oxygen tanks, adjustable beds, syringes, gauze, isosource, blood pressure monitor, thermometer, bed pan, urinal, vest airway clearance system, and a small pharmacy. Eric has no more dignity, he uses the bathroom even when new strangers are here to assist. He can not move his head or any other muscle but his left hand without someone else assisting him. We have so many friends. They are trying so hard to be helpful. They are having a redfish tournament in his honor on the 30th of this month. It is already raising a huge amount of funds. I told him, hey Eric....we could even put in an elevator and you could go out. Would you want to? He just looked at me. I said, you don't even feel like it, do you? He shook his head, no. In only a year, we have been robbed of our lives. Marriage? I love Eric and will always take care of him.....but the word I knew as marriage is gone. I hate ALS. I hate what it has taken from the absolute most wonderful man I know. I miss his voice and his 6'3" stature towering above to protect me. I miss going to dinner and hearing his voice. We still cry together when times are tough. This message is for those of you who have this awful disease. Please tell your spouse you love them and record it while you still can. Have candlelight dinner together. Talk a walk...even if it is in a wheelchair. We were robbed of these moments before we even knew they were passing us by. I know that God is touching a great number of people through Eric's illness. So please don't waste time asking "why". Just spend time figuring out what needs to be done and experienced while you still have time.
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
City
NZ
Thank you so much for your post. It was very touching. I wish all those people on the Do I Have ALS? Forum, with their minor twitches would bl......dy well read this and get a life. I am so sorry that this disgusting disease has entered your life. I am sorry that it is your pain that is touching others. It just shouldn't be.

Love to you both
Aly
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Catcaniac everything that you write is raw and soul baring--so much so that it makes me cry when I read it. I have nothing to say that could possibly make a difference, but please know that I think you are a hero.
Laurel
 

Bhappy

Distinguished member
Joined
Apr 6, 2011
Messages
169
Reason
PALS
Diagnosis
02/2011
Country
US
State
Illinois
City
Anywhere
My thoughts are with you and Eric. Please know that you have my respect and admiration. I watched an aunt I was very close to go through this during my teen years. I'm trying to take your advice of enjoying each day while I can.
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Cat, thank you for sharing the pain. It seems like a month ago when you were so upbeat and ready to battle the beast. There is a verse in Proverbs saying that joy can be shared with everyone, but sorrow is kept for only close friends. I'm crying while reading your post. Your advice to us, the PALS, is very good. And I'm so sorry your suffering has been intense, robbing you faster than you can breathe.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
cat thankyou so much for your post,its heartbreaking to read so i can not even begin to understand how much you and eric hurt.
i agree with aly,so many people complain sometimes over trivial things but they dont have a clue what real suffering is.
we should remember well thats its not just the pals but cals and loved ones who suffer also and what a marvelous job they do in giving the best possible care to there pals.
cat and eric please know i will be thinking of you.
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,757
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Saturday will mark a year since my husband's diagnosis. Like your husband, his progression has occurred at warp speed. The pain is unbearable at times. I, too, miss my husband. You are in my thoughts.
 

CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
208
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
City
Roseville
Wow. Thank you for sharing your year. It gives us all some very powerful food for thought.
Love and light
Meg
 

nauleshwar

New member
Joined
Apr 13, 2011
Messages
1
Reason
PALS
Diagnosis
08/2009
Country
IN
State
bihar
City
PATNA
even god played with my family...my dad is a patient of brain tumour..and was operated 4 times earlier for this...even after that he was f9 for 11 yrs...but this was not acceptable to god...he ruined our rest of lives with the name of.......MND.......MY CAREER IS LOST...ALL I CAN DO IS WAIT FOR HIM AND COUNT THE REMAINING DAYS...
 
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