First time talking to others

[milanumpa]

Hugs to everyone!

 

[Wildemom]

Hello! Your story reads very similar to ours. My husband is 42 and I am 37. He was also a very healthy, strong man. Actually, at one point in his life he competed in weight-lifting. I too have just joined hoping to find support from those that know exactly how I feel. It is hard to explain to my friends whose lives continue to go on when I feel like ours has stopped. My husbands decline has been slow but with each passing week I can see the changes. Today, he came home from PT and I asked how it went. He said his arms were really weak but they always were afterwards. I said and so then it gets better and he just smiled and laughed a bit and said no. I couldn't help but cry as I can see how our lives are changing. I see more and more things that we once shared in responsibility coming on to me totally and that makes me sad and angry at the same time. How can I be angry I ask myself this wasn't his choice. But I never thought I would be caring for our family by myself. There are so many hard parts and I believe I am just at the beginning of realizing all those. One reason I joined was a couple weeks ago I was watching CBS Sunday morning and I saw the man on there who was diagnosed with ALS. He had a dream of stealing a donut truck and giving out donuts. Krispy Kreme helped make that dream come true without having to steal it. Him and his family looked so happy. I wanted to be in their shoes, I wanted to talk to his wife and understand how they could be that happy. I tried to look her up on FB with no luck, I figured if I did find her she would think I had lost it. That was when I decided it was time for me to find someone who could relate and maybe help me put a new spin on this awful situation. I hope that maybe that can be and that maybe I will be able to help someone down the road like others may help me.

 

[zoohouse]

You have come to the right place. Anger is one of the emotions we all have to go through when mourning the loss of something so important. I get angry at God, my husband, and myself among others. There are nights that I just want to go sit in the Van inside the garage and scream, so that nobody can hear me, but I can get it out. I remember in the beginning when I felt anger about the added responsibilities, I would ask myself, would I like to trade places, and invariably the answer was no. There has been the very odd time that I thought it wouldn't be so bad having someone else do everything for me, but that last about a second when I think about what I would be giving up. You are a warrior now, in the battle of your life, and you can and will do it, what is your choice? Come here when you need reinforcement and we will all lean on each other, making a massive column of strength.
Paulette

 

[tdamess]

my son has been diagnosed for 4 yrs now we have our sad times but mostly we keep each other up , by joking around pulling pranks on him or he has us set up , we help his wife but never much at nite and we just found out how bad when she landed in the hospital so we will make sure she gets all nite care at least 2 to 3 times a week so she can get a full nites sleep I cant help much myself but I try to over see his medical equitment and make the calls I can ... one thing to remember is he is not dying today and draw happy times from that .... hugs

 

[Barbie]

sadness is so normal--especially when you are letting go of the wonderful life you had and re-writing your role in a marriage and family. It is hard to believe but the happiness comes again. sometimes it is just little things, it is definitely different than when you were both healthy, but you can have it again.

Sending you a big hug

 

[SMP51]

my husband too was that big bulk of a strong guy who could carry the world. He may not have the strongest arms any longer or the beautiful legs but he still has the strength to carry two world. I never realized how strong he really is.
the hardest part is the thought of the future with out him, today he is hear and we will deal with whatever... together

 

[HeyDonnaDonna]

I've been lurking around and this to is my first post. 1/21/2014 is the day our family received the answer. My dad is 65 and was diagnosed with ALS. He's been in the hospital since and is scheduled to be released in two to three days.....I've seen a steady decline. He can no longer walk, speaking is difficult, excess saliva, lack of appetite, extremely tired, diaphragm is affected by this darn disease, he has shortness of breath, any movement is tiring.....

It seems to me that this disease is attacking him quickly.

 

[affected]

I'm so sorry for your dads diagnosis Donna, it's such shocking news, and now you join the club no one wants to join, but here will you find great support.

Can I ask why he has been in hospital for 4 weeks? It isn't usual to be admitted to hospital for this diagnosis.

I'm also sorry for his fast progression. My husband has bulbar onset and has been fairly rapid decline. We were diagnosed last May, and he has lost abilities every single day.

Do you live with your father, or close to him? Are you able to talk to anyone outside the family about your own feelings? It's so important to remember this disease affects the whole family and you will go through grieving yourself and it is completely valid. Of course we can be a fair counselling service here too.

 

[Wildemom]

Oh SMP51, a life without my husband and friend is the hardest part. Every time I let that thought come into my mind, I just cry! I understand your pain!

 

[Ronnie& sissy]

Wildemom, i know that feeling, so many thoughts started going through my mind, and I found I could not stop thinking about those things... And one day, I started to pray, and as I let everything out, I cried I screamed and was really just lost, it finally came over me..... "You can only control what your in control of". And literally from that point on, I can't force myself to think of some of the thing I was worried about. Don't get me wrong, at first you do have to be realistic and get things in order, and talk about stuff you normally wouldn't, I think that is very important. But if your anything like me.... I tend to obsess over things, and that is not a good thing.
For me, I can't control ALS or the progression,or the end result, I can control him being comfortable, him having knowledge of what's happening, us having a safe living space, things like that. So that is what I focus on. And to tell you the truth, when God helped me realize that he also lead me to this forum, and what a turn around our household made. Just for the fact, that I finally had people that understood, and they actually listen and help, in turn I realized what an effect my attitude had on my pALS and the daily process of things. If I stay positive, he seems to follow suite, if I'm cranky, he's twice as cranky.... And that's miserable... If I try something out that I learned from someone hear, he thinks I'm wonderful, and that's awesome! Lol sorry everyone, I do take the credit for stuff! Hehehe.
Ok I started rambling, but I guess the point is, this damn disease seems to take us CALS on a roller coaster of emotions, just know that with each step of the way you have a whole forum of CALS here for you! We give good cinder hugs!
Prayers for all!

 

[Santa joe]

Sissy, you are doing a wonderful job as a CALS. I am also glad you found this forum. I feel like I've already made so many friends to walk with me on this journey. We are all headed down the same path and knowing that we are here for one another is so gratifying. I thank God every night for getting me through the day and ask that he help me get through tomorrow. That's all I can do.

 

[HeyDonnaDonna]

Tillie/Affected, he's been in the hospital because at first they weren't sure what was going on. He was at community hospital at first then transferred to a larger university where they ran tests. EMG, iVIG, Doctors changed their minds about the muscle biopsy. The iVIG was performed to rule out any other diseases. After these tests he was recently transferred to rehab. He's going to be there a little longer so all the necessary equipment he will needs arrives all at one time.

At first their diagnosis at the small hospital was frozen shoulder with lack of exercise, obesity. He had been through a battery of tests during the summertime as he was short of breath, shoulder was bothering him, etc. at that time, they did not have an answer until his second episode in January 2014, which is where we are now.

I do not live with my dad, however, I plan on moving in. My husband is very supportive. This is a family affair. I need to do what I can.

Tillie, of all illnesses to get! Why this one? If it was something else, we could fight, there'd be some hope! But shucks, I heard of Lou Gehrig's but never new what it meant, and now that I know, all I can do is focus on our time together, making him comfortable.

Thank you Tillie!

 

[SMP51]

Wildmom, thank you.
I don't have many tears, he is English and we are firm believers in that stiff upper lip......but the empty void that looms ahead of me overwhelms some times! I mostly live in the "today" to deal with it, but CRAP we just got the kids grown, lol!

Sissy, lots of good words! I also try to keep a busy active house.

DonnaDonna, your a good girl! our daughter has been a God send, very glad we didn't kill her as a teen
family makes it so much easier, I am so sorry it has hit your dad so fast an fiercly but glad you have a good support system getting put in place

 

[affected]

Hi Donna,
thank you for taking the time with that explanation. I think many of us go through something like this to reach a diagnosis. My husband is bulbar onset, so we went around and around with Dentists, ENT's and Facio-maxillary specialists, all referring us back to each other after new barrages of tests.

Keeping him in that hospital is wise, you will all manage so much better with the equipment you need set up in place.

I don't think you will ever regret getting this involved to help, and I want to say that it is wonderful to see families work together.

I know you will work through these first months from diagnosis, it's a hard time and I still find myself shocked 9 months after our diagnosis! We are a new couple too, not even married for 3 years and more than 18 months now since we knew something was wrong. So I still feel ripped off, but I also am so thankful that I met him and he isn't going through this in some nursing home because his children couldn't look after him.

Keep posting here, the support is life saving

 

[HeyDonnaDonna]

Tillie & SMP51, thank you for your kind words and sharing your stories.

SMP51, so glad your daughter made it through her teenage years. (That made me smile and laugh!)

Tillie, Your love brought you together and will keep you strong through this most difficult time.

Chin up Everyone! Today is another day together!