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smoochiegal

Active member
Joined
Jan 3, 2015
Messages
87
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Lost a loved one
Diagnosis
08/2014
Country
CA
State
Ontario
City
Otonabee
Hi all,
I have been on this site for about 2 weeks but this is my first post. I have laughed and cried with many of the posts I have read. I have felt connections with so many of you on here as I suddenly feel like I am not alone with this crazy disease. I could have written some of the posts I have read. I cannot tell you how it feels to have people who KNOW what I am going through. I feel like now is the time that I need to reach out as I am taking a leave from work to care full time for my dear husband. I feel like I am losing my support group at work and need to fill that. I am sure I am at the right place.
A little bit about me. I have 2 incredible boys from a previous marriage. They are 12 and 15. My husband and I have been together for 7 years. We just got married in October after the diagnosis as I needed him to know that I was going to be by his side no matter what. (we had a surprise wedding at a baseball fundraiser that his work had organized for him ... best day ever!)
My husband is 45 and was diagnosed in August of 2014. He still has his mobility, but no use of his right arm and very little use of his left. His neck muscles no longer support his head and he told me yesterday that his tongue in starting to get weak. He does not want to have a PEG tube.
I am so looking forward to 'meeting' you all and learning from your experiences.
Cheryl
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,564
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Welcome, Cheryl. You are absolutely right--this is the place to be. I'm so sorry you had to join us, but am glad that you've decided to add to the conversation. How wonderful of you to marry your husband, knowing what you face. He is a fortunate man and you are a wonderful woman. A surprise wedding at the fundraiser sounds marvelous! My husband originally said no peg or vent, but he's changing his mind as things progress. I think that is normal, although many don't. From everything that I've read, the PEG seems to be a no brainer if he's still breathing and functioning well, but I'll let other's with more experience weigh in. October is a new diagnosis, and I'm sure that you are still processing. It's such a rollercoaster, the ride that ALS takes you on. Please stay in the car with us--we'll take it together. You are right--it's wonderful to converse with people who truely understand...
 

GilWest

Distinguished member
Joined
Mar 1, 2014
Messages
358
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
WV
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Southern
Mom didn't want a feeding tube either. However after daily choking and nearly starving to death, I convinced her. I think when many hear feedng tube, they think of a late stage dementia patient that has no idea they are even starving anyway. ALS is different. Your mind is untouched. That is what I told Mom; she would know that she was starving and be completely aware of the hunger. I only wish we had gotten the tube back when the doctor first recommended it. She gained 20 pounds of the 30 she lost back. No more choking, but no more enjoying food though. I still sneak her a little coca-cola in a dropper every once in a while.
:)
Some docs are now recommending trachs for suctioning only...that is a slippery slope.

Now, trach with vent....not so sure we would do that if we had to decide again...
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
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US
State
Texas
City
Pinehurst
>Welcome, Cheryl. You are absolutely right--this is the place to be. I'm so sorry you had to join us, but am glad that you've decided to add to the conversation. How wonderful of you to marry your husband, knowing what you face. He is a fortunate man and you are a wonderful woman.

Ditto that!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
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orlando
Hi Cheryl--welcome to the forum. I promise you we will be here for you no matter what. This is a tough road but we do understand and can help you a lot. why have you decided to leave work? It is definitely hard and exhausting to do both full time work and full time caregiver but I know work gives me a time away and keeps me connected to the non-ALS world. try to stay in touch with your co workers--maybe dinner with someone one night each week. your kids could stay with dad at their age for a few hours. you will be a better caregiver for it and keep a better attitude. it is easy to get truly burned out.

Barbie
 

smoochiegal

Active member
Joined
Jan 3, 2015
Messages
87
Reason
Lost a loved one
Diagnosis
08/2014
Country
CA
State
Ontario
City
Otonabee
Thank you all for your welcome. Even though all of us wish we did not have to be here!

I have decided to take a leave from work because my husband is declining very quickly. I know that the days that I have with him are limited and are precious. I do not want to have any regrets later on wishing that I had spent more time with him. When I found out that I could have the rest of the school year off at 90% pay, I knew that I had to be home with him now.

Also, I am an educational assistant in the school board working with kids who have autism. I was finding that the day with special needs kids took so much of my mental energy that I did not have enough patience left at the end of the day for my husband or my own kids, let alone any energy to look after myself as well. So, yes, I am certainly going to miss the support of my co workers and having something that is mine and not ALS related, but I know that this is the right choice as hard as it may be.

I have an incredible support system of friends, family and Professionals it will just take more effort and planning time to be sure that I still get out.
 

Candle2014

Member
Joined
Dec 18, 2014
Messages
16
Reason
Lost a loved one
Diagnosis
02/2014
Country
UK
State
UK
City
London
Sorry you need to be here.

My mum wasn't keen on a PEG or assistance with breathing but did have an NG tube after quite a lot of persuasion from nursing staff. I was happy to support her decision although it was difficult as no one should have to make them. I'd recommend doing as much as you can as a family but it doesn't sound like you need any advice on that score. Congratulations on your wedding.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
Well hi Cheryl! Welcome to the most useful club that no one should have to join.

My wife (_my_ wonderful Barbie, not to be confused with the _other_wonderful Barbie who posted above) is (was?) a teaching paraprofessional who also worked with children with autism.

Your husband should be encouraged to become a member also. I would also suggest that he hold off on stating he "will not" do something until the initial shock and anger has passed. A peg is relatively benign and is also very easily concealable. It can contribute to quality of life.

Finally, I recommend both you and your husband to another website, one created and maintained by one of our members, Diane H, who is not only a PALS (Diagnosed 29 years ago!) but also a former nurse specialist in Neuroscience. ALSfrombothsides dot org details her experience and learnings.
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
675
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
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Fort Walton Beach
sad to have to welcome you, but welcome you are! great people here, always have wonderful advice and open hearts. and yes... we DO understand.

PS. watch out for Max, I hear he is a trouble maker! ;) mahahaha!
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
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US
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Pinehurst
>PS. watch out for Max, I hear he is a trouble maker! mahahaha!

talk about 'falsely accused unjustly crucified'! Meg, you crush me! :) Now Mark, Dave, Jeff, & Greg are a different story ...
 

affected

Guru status reached
Joined
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Messages
13,494
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
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lala land
Welcome Cheryl, so sorry you have to be here though.

You won't regret taking this time off work. Well OK some days you will feel it is too much and wish you could escape to work, but really you will know very quickly that you have made the best choice for your whole family, yourself included.

You will find yourself amongst family here, but you probably already noticed that and so we welcome you in.
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
675
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
>PS. watch out for Max, I hear he is a trouble maker! mahahaha!

talk about 'falsely accused unjustly crucified'! Meg, you crush me! :) Now Mark, Dave, Jeff, & Greg are a different story ...

awww, you know I love ya ;)
you are our Champion doing battle for us with the beastie FDA....my hero!
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>you are our Champion doing battle for us with the beastie FDA....my hero!



:)
 

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
Cheryl, My husband doesn't have a peg either. have you started pureeing his food? without a peg tube that is what is needed. I have been thru probably 6 food processors --wish I had just bought a vitamix the first time. now we have a Nutribullet and that works pretty good but I think it is starting to wear out. Calorie count is hard to keep up without a peg also.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>------
Fruit smoothie 350 cals 2x / day = 700 cals
chocolate milk/banana/2 tbls peanut butter 700 cals 2x /day = 1400
gazpacho 150 cals 2x /day = 300 cals plus the fiber to keep the plumbing going :)

total ~ 2,400 cals/day, have lost 4 lbs since not being able to eat Feb/2014
-----
 
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