my husband was just diagnosed

[Star]

Hi all,

My husband of one year has just been diagnosed with ALS. He is going to be 34 years old. It started with leg cramping and muscle spasms, limping, falling and now he has a leg brace and it helps somewhat, he is still walking. He feels twitching throughout his whole body and I am so scared that this is progressing faster than we know. It seemed to have started about 2 years ago. He was diagnosed 3 weeks ago. We have a four month old baby girl, she is our hope and I know she has helped us get past the last couple weeks. It is so hard to see my husband who is so strong, deteriorating before my eyes. And then I think of our daughter and it breaks my heart that she will have to go through all of this. My husband is putting on a strong front for the most part, but I know this is hurting him so much. We had our life planned and now it is being turned upside down. I know we have to just take one day at a time and that everyday I have with him and my daughter are so precious. I do wonder where we will get the strength and courage from.
Star

 

[Carol Deboer]

Dear Star,

I am so sorry to hear the news. You will get through it though. I have, we all have. It is amazing what happens to the human spirit when it is tested. You will be surrounded by loving family and friends, they will help you, as well as your sweet baby girl. Live each minute,and love much.
Will add you to our prayer list. Stay Stong.

Carol D.

 

[TBear]

Hi Star:

Sorry that you are going through this... your husband is lucky to have someone who is taking an active part in this ride. Two years of symptoms is a long time to, at this point only to be saddled with impaired walking. The rate of degradation changes... even stops for brief periods of time.

It is sad that both you and your daughter will suffer through this... I did and so did my 3 daughters. I wouldn't wish the loss of a partner/parent on anybody, but my kids took an active part in my wife's care and are better for it. I have a friend who calls these things AFGO's (sarcastically).

You will find that you will have friends and family who may or may not step up for you now... but I know of no one here who won't go out of their way to help you through this. If you have any questions anytime just address the forum... there's usually somebody here who likes to add their two cents... and it's all heart felt!

CHeers

T.

 

[me]

Star - You are definitely welcome here. This is such a wonderful group of people. I have been married 4 1/2 years and we've been struggling with my husband's health problems for right around a year now. We have no diagnosis but everyone here is so understanding and kind that I kind of "hang out here" because it's a group that is willing to have me.

If you need anything, even just to chat, let me know. So far that has been my biggest need, feeling alone. As for questions, there are some real experts here. Huge hearts too, you've landed in the right place! - melissa-

 

[DebbieD]

hi star!
i feel for you and your husband! i know how devestating this news is. i was diagnosed last month, but it didn't come as a surprise to me. i find that living in the moment is the best way to get through this. try not to worry about what's ahead, but enjoy the here and now. there could be a cure right around the corner. there is so much research going on all the time and there is such an awareness of als now.

may God bless you and your family.

 

[islandcharly]

Hi star!

i would just like to say i understand your fear(s) and concern. altHougH to give you a bit more Hope, my ex-Husband was diagnosed at 30 years old. He is now 38! He Has bad days and good ones but He is doing okay. He started tHe same as your Husband.

altHougH my Husband and i were no longer togetHer wHen He was diagnosed, we remain tHe best of friends. sadly, He lives in ontario and i am unable to see Him frequently but we sHare a 15 year old daugHter and He sees Her as often as possible. He and i communicate often - mostly email.

please know tHat it does not Have to be as grim as it seems. i know tHe reason donvan (my ex Husband) is still Here is because of His determination and positive tHinking. in knowing Him, i am sucH a very fortunate person. He is a strong, loving, kind & stubborn guy tHat sees a ligHt at tHe end of tHe tunnel.

i am very sorry for your family and wisH to offer you anytHing i can in tHe way of emotional support.........and one more tHing......i live in nanaimo and used to live in port alberni.

take care!

 

[Snowbird]

Coping

Hi star!

so sorry to Hear about your Husband. we are glad tHat you Have 'come aboard'.

my Husband's symptoms were very similar to wHat you Have described. besides tHe leg cramps, He Had extensive itcHing of His legs, especially wHen He was driving. He could not lift His arms over His Head. wHen i look back, we Have been dealing witH tHis for 2 1/2 yrs at tHis point.

we Have found tHat 800 mg daily of vit e Has Helped tHe twitcHing, cramping, and pain. anytime tHat we Have neglected it for a few days, tHe pain returns, so i Have to believe tHat it Helps.

currently my Husband is in tHe Hospital to give me a rest. He gets turned every Hour at nigHt by 2 nurses. it is even difficult for 2 nurses. i also gave tHem 3" of memory foam to put on His bed, and it Has really Helped relieve His pain. all tHe lifting to His wHeelcHair is done witH a Hoyer lift, and we used a multi lift from accessunlimited.com to lift Him into our big truck & rv for traveling. tHen we got an airmattress witH memory foam on tHe top for Him to sleep on. i am only mentioning tHis because tHere are so many tHings you can do as a family as time progresses. do lots of researcH and enjoy your family tHe best you can. be strong. everyone Here is beHind you.

i Have done 90% of all tHe care myself, and i am getting really worn out. i can sleep for days on end now tHat my Husband is in tHe Hospital. all tHe emotions tHat are described do surface at one time or anotHer. foolisHly i Have alienated all of my friends and activities over tHe last 2 yrs, and now i know tHat i need to get back to 'my life' in some small way. i don't know How otHers manage.

 

[me]

i have a question i need to ask....snowbird you touched on it in the above post. how does everyone deal with their emotions. i know everyone is different....and that is exactly the difficulty my husband and i are having. he is the strong one that mostly wants to ignore that anything is going on. i, however, feel my emotions bubbling just above the surface all the time. i have felt like i can't let him see them because of various reasons. but, then i just feel like i'm going to explode.

so, what do you do when you just know that lump in your throat is going to turn into tears? (as an example). where do my emotions fit into this thing? i will consider all suggestions! -me-

 

[TBear]

Hi melissa:
i tHink your Husband already knows sometHing is wrong witH Him. tHat's probably a lot to deal witH. if you are Holding back your emotions to Hide sometHing, He's going to know tHat too and probably tHinks He Has to deal witH tHat as well. i tHink tHe bottom line is to do wHat you normally do... just try not to let it rule your relationsHip or your life.

trust me... i'm tHe cool and controlled one in our House but, four years later i'm still repairing Holes in tHe walls from not so frequent outbursts wHen my wife was dealing witH Her als!

cHeers

t

 

[PALS Mike]

Do not holD your emotions in!

crying is the boDies methoD of venting anD easing an emotional burDen.
seek counciling...
grab a hammer anD pounD nails in 2x4...
hop on to the forum anD write...

how can you sort out your feelings if Don't express them somehow?

a simple (but effective) methoD is to...
grab a pen anD paper anD write out what you're feeling anD/or thinking, no matter how baD or mean anD nasty it feels.
just let it loose! (noboDy but you neeDs to reaD it)
take that letter (grab a glass of wine...too) anD burn it!

all those baD feelings will be carrieD away with the smoke anD the burDen lifteD.
i've trieD it...it works.