New and unsure of what to do next?

[affected]

Friends could ask me all kinds of things because they were actually concerned and ready to help out or offer support of some kind.

I think that is the big difference - when people just say something to fill a perceived gap, rather than genuinely caring and offering any kind of support.

 

[Megan Dontain]

In an earlier post a few of you had asked if my husband and I had any children, we do. We have a beautiful 11year old daughter who has her dad totally wrapped around her finger and a 9year old son who is the spitting image of his father. We have been together for almost 14years and the thought of going on without him in my world crushes all the air out of my lungs. He is the best thing that has ever happened to me. I feel so robbed and I want so desperately to blame this on someone or something and there's just nothing....

 

[Nuts]

Oh Megan, I know that feeling. At the same time my husband was diagnosed, another friend lost her husband to a heart attack. I try to keep reminding myself that I could have lost my love that way, and so every day is a gift. Then I slip and ask why?, and immediately see the words "why not" in my head. It's beyond heartbreaking, but over time you will become better able to face it. Not soon, but in time.

 

[Nuts]

Tille, maybe that is the difference. You are so wise...

 

[SMP51]

Megan, that is me too.....I am a Meganne(the old Priest was a bit creative when Baptizing me).
sorry you find yourself here with us. it just sucks.
given a little time I hope you can figure out how to see the glass half full instead of half empty.
ALS does make us take inventory in what is important in life, and that can be a good thing. and remember, none of us is promised tomorrow, only today. And there is no expiration date on the bottom of anyone's foot. take today for all it is worth, be wise about tomorrow.

I feel the same as you about "grief" counseling, my husband is not dead for goodness sakes! but we all do need support getting through this
this is a rough road we travel here but we are here for you, and each other.
when I first became a member here there were many threads I simply could not read. but in time as I have needed information and help it all has become invaluable.

yes, sounding so positive...but I have screaming monkeys no one but I can hear!

side note...got a Christmas card with well wishes and hopes Steve was getting better....... *sigh*

 

[Barbie]

I Think being here has made me a more positive person because I know there are forum friend who care and have my back. Megan, you will go thru better times and then hit the skids again. we all do. it flows and ebbs.

are you on anti-depressants? if not, they could help you get a grip on your emotions. especially with little kids around, you have so much pressure on you. I am sorry you have to go thru this--your family is so young and it is just so not fair.

Have you been able to get out at all and take a break? caregivers need it much more than they usually realize.

 

[Joyce310]

Thank you all for your warm welcome. You all sound like you have it all totally together and I hope to gain that mindset eventually. I'm still super apprehensive about dipping my feet into this pool. Sometimes I can't even sort my feelings about ALS out in my own mind, let alone type them out for the world to read. All I know at this minute is I don't want any of this...I want my husband to be able to walk and breathe and live.

Hi Megan, I just joined today. We don't live to far from each other. I hope to make it to temecula soon for some wine tasting before its too late for us. My hubby was diagnosed in May at the age of 47. I spent two months trying not to cry but the tears just wouldn't stop. Jim had knee surgery because we thought a torn meniscus was causing his weakness. He went to physical therapy and the therapist sent him for further evaluation because of foot weakness. We ended up with a neuro test that was not good and I asked then if it could be ALS and they said probably not. Went back two weeks later to find out they wanted us to see ALS specialist at Cedars. From that day on I couldn't stop crying. Tried not to but could not stop the tears. I called my doc the day they referred us to the ALS group at cedars because I knew I needed something to help me. If you have not done so yet I really encourage you to start with some meds. I would still be crying every day if I did not get meds. It took a few tries to get the right strength but it really helps! Please talk with your doc if you have not already. Here is a little info on our journey to date. Jim's started in his right leg. He got a brace in June and then one for his left leg in September. We went to our clinic visit in August and he was breathing good. Within weeks I noticed his breathing at night was very shallow and it scared me. I would wake him up to move to his side so he could breathe better. Ended up calling the clinic and going back early to check his breathing. He went from being in his 70's in August to his 40's in November. He just had surgery and had the DPS put in along with the awful feeding tube. He had surgery on Wednesday December 17. He is finally doing better but it is really hard to see this damn illness progress. We have had discussions and he likes "illness" better then "disease". I'm sorry if I am boring you but you are the 1st person I have contacted.

 

[MaxEidswick]

>Have you been able to get out at all and take a break? caregivers need it much more than they usually realize.



Ditto that!



Max - Monday, December 29, 2014 10:58:49 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Megan Dontain]

Hello again,

Thank you for your advice and support. A few of you had asked about medication to help me cope and the answer, as much as I hate to admit it, is yes...I have recently started meds to help me through this. I absolutely hate it though as it makes me feel weak minded, like not only is ALS kicking my husband's a$#, but also my mental state. I have noticed less bouts of crying though, so that's good for my children sake.
As far as getting out for a break, my husband is still able to walk, although he can't go very far, his legs are too weak. We drop our kids off at school and spend the day together out running errands and we'll have bite to eat somewhere. He has always been a workaholic, so he really misses not being able to work anymore. He refuses to use a walker or any motorized cart at stores and Only recently started using a cane to side with walking. Most of the time he just waits in the car while I run in to the store.

 

[MaxEidswick]

>He refuses to use a walker or any motorized cart at stores

Megan you have to fight to overcome this stubbornest. do you have plans for a pwc? veteran?

>like not only is ALS kicking my husband's a$#, but also my mental state.

this is a family problem. Is the diagnosis confirmed? when/where. don't trust all neuros!

read the 'pity party' thread and get to know some of the CALS -- they are an awesome bunch!

again, for PALS DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

fwiw

max

 

[azgirl]

Megan,
Do NOT feel bad about taking meds to help. You've got so much to handle and you have to stay strong as possible for your kids and husband. Try to enjoy those outings with your husband, maybe even plan a family trip.

Have you applied for social security disability?

You have an army of us on your team now!
-kay

 

[Megan Dontain]

-Max, I'm sorry but I'm still getting the ALS lingo down. I'm not sure what PWC is? I'm taking a guess here....power wheelchair?

-Azgirl, yes, we have applied and do receive social security.

-As for diagnosis.....my husband first started testing Jan of this year by a primary Dr and neurologist. After numerous tests both came to ALS diagnosis. We then sought a third opinion with a rheumatologist just to see if it wasn't perhaps something autoimmune that was missed. All tests were negative. We then sought our final hope at Loma Linda Medical Center and the neuromuscular specialist also confirmed ALS.

 

[MaxEidswick]

>-Max, I'm sorry but I'm still getting the ALS lingo down. I'm not sure what PWC is? I'm taking a guess here....power wheelchair?

yup

 

[affected]

Oh Megan. People here tell my I was amazing in how I looked after Chris, and I've been overwhelmed by the things health care workers have told me of the high level of care I gave him also after he passed. Everyone says I am so strong, and so capable.

I used antidepressants and I did not feel weak for it, I felt that I was going to do everything I needed to do in order to survive and be able to give Chris the care he needed. They took the edge off for me. They stopped me feeling like I was constantly silently screaming inside.

I still felt everything, it was still incredibly hard, and I battled emotions all the time, BUT I was able to keep my nose above the sea that seemed it would drown me and paddle my way through.

Please don't feel you are weak minded, in fact you are strong minded to acknowledge that you need this help. This is as big as it gets, you are facing one of the very hardest things we ever will have to face. There are no extra brownie points for doing it without any assistance.

I also saw and still see a counsellor, and my family here were amazing support. Gathering all the help and support you can is WISDOM not weak mindedness.

 

[Barbie]

Exactly right on Tillie.

Welcome Joyce