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emmaboo

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So here goes my first post. I have been feeling a tremendous amount of anxiety about making my husband's illness about me. But I find that at some point, I need to find somewhere where I can talk about it - an outlet for my emotions - which include all the stages: sadness, anger, fear, denial, etc.

I just watched the video made by the NO Saints player diagnosed with ALS in 2011. When I watch him, I wonder ... are they sure my husband has ALS? Of course, the 6 specialists we saw and the attempts to treat for MMN proved that it was. But it has such a slow progression in his case, and he is not showing the same signs that I see in what I've read on here so far (and in other literature) that I am given to pause. Yes, he's lost all if not most of the muscle mass in his left hand and is clawed. And yes, he now has lost the muscle mass in his right ankle and calf and rolls his foot when he walks. And yes, his right hand is starting to have some of the same symptoms his left hand when we first noticed a problem 5 years ago ... and ... and ... and ....

But he can still walk- albeit very carefully and not very far. He can talk without slurring. And he can breathe. Heck, he can ride his bicycle for hundreds of miles. A bucket list item of his - which he decided immediately to pursue with a passion as soon as he was diagnosed. He has ALS, can't walk two blocks, but he can ride 100 miles in a century bike race. Help me understand how this is possible? I keep asking myself if they could be wrong. This "they" of experts.

He was "officially" diagnosed this past year in June 2012. As you all can empathize, it was a very emotional day. We had suspected that he had it, been told by many practitioners that they thought he had it and then finally ... it came ... the "official" diagnosis. Followed by mounds of disability type paperwork on which was written - those words that you really don't want to hear or read, "there is nothing that can be done to prevent the fatal outcome of this disease." And then ... the second opinion ... and the third opinion and so forth.

So what do I do? My husband is an incredibly healthy 43 year old man. We have a 5 year old son. And my husband is going to die. But I keep waiting for these horrible next symptoms ... and they aren't coming ... at least not yet.

So there you go ... first post and I can't shut up. I will now. Thanks for reading, and thanks for being here for me to find today.
 
So sorry for your husband's diag no sis. Sounds like his progression is extremely slow.

Some researchers believe that the progression rate is set at the gene level. There is a great deal of variety in t he way the disease presents and progresses. I know of a former Neuro nurse who has been living with ALS for 22 years.

Have you watched the 3 videos called the ABCs of ALS? You'll find it on you tube. Excellent.

Please take some comfort in his slow progression. Some of our friends here have passed in a matter of months from diag no sis.

Join a support group in your area. Try to do the things you want to do while he is able. Try to live in the moment.

Come here to share or rant whenever you need to.
 
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Hello and welcome!

Sorry about the diagnosis, but happy to read your husband is in the slow progression lane and remaining in the fast biking lane! That's really impressive. So tell me, d'ya ever get a ride on the handlebars? Ha!

I know just how difficult the ALS letters are to read and utter and live and accept. Been there, doing that! But, there is so much life after all of those financial housekeeping issues are dealt with. Your husband is a shining example of perseverance and your son is blessed having such a great dad and role model. You picked a wonderful husband.

Wishing you only the best and look forward to getting to know you. This place has been a lifeline for me!
 
Hello!,

I am glad you are here--you will find so much support and assistance fromso many great folks.

ALS is a family disease--while your husband actually has it --it is about you as well. your life has been impacted and will continue to be impacted. Dont feel bad for thinking about yourself because you are human and that is what we do.!

Slow progression is great--so many do not get that so it will mean the world to you and your son. I am amazed that he can ride a bike--my husband could not balance on one soon after his symptoms started.

I think it is very normal to think maybe they are wrong and the diagnosis is wrong, especially with slow progress. All you can do is wait and see, and look into other disesase and treatments. I know sometimes I still even ater 6 years think that somedays.

Good luck and please keep talking to us!
 
Thank you all for your kind words and welcome. I must admit I teared up as I read them and am tearing up now as I write this note. Unfortunately, we don't appear to have any groups in our immediate area. We're in a fairly small northern CA town. I know my husband has had several conversations with the ALS Association chapter in Sac and they have been so helpful for him.

His mobility is amazing to me. He is such a strong willed person and has taken this as a challenge to be overcome. He's had a bad week though. A couple of well intentioned friends, who do not know, have commented on his limp/dragging of his right leg. It hit him hard and to his core. He genuinely believes no one knows or notices, but it is one of the worst kept secrets in our small community of friends and acquaintances.

Then there are my favorites, the equally well intentioned who have a friend who had this or that and it turned out to be.... Each time, he gets hope and then upon further investigation ... His hopes are dashed. That has also happened a couple of times this week. Which means we got to last night, and boy was he an anger ball! I get it though, but its hard to have him take it out on me.

It's really nice to have you all here. Again thank you.
 
LOL that is so like when we started--my husband wanted to keep it a secret--so everyone thought he was either suffering from a stroke or had become a big drunk...and so many "cures" to be ware of--their are so many that want to take the money and sell false hope. We wasted much money (thousands) on crazy things. Most here have a jaded eye when it comes to anything claiming to "cure" or "help". It is heart breaking....

Honestly, this forum has helped me so much--being able to talk with people who understand and don't judge. I feel so much better than I did before I came here. I hope you can suggest your husband become a member--Pals and Cals really benefit from so much understanding and information.
 
Does he have an AFO? They really do help with walking.

Check with the Sacramento group to see if you could telecommute or Skype a support meeting.

The CALS here are super and will be willing to lend an ear anytime.
 
have is doc get him sorted out with a brace for his foot/leg. It will keep his foot from dragging and help him walk steady again. My husband wore them on both feet eventually and it kept him on his legs for a couple years
 
Emmaboo,

You and your husband can take great comfort in the fact that in 5 years of symptoms he can still walk, has excellent leg strength, can ride a bike for long distances and shows no bulbar symptoms. Progression rates are generally constant, especially for limbs. I suggest he has many, many years ahead of him.
 
The doc has prescribed a brace for his leg and he refuses to get it. He thinks that if he wears one, people will notice that there is something wrong. ;-) Seriously, his denial is better than the river.
 
Thank you. According to his doc, she "suspects" he will be in the class of patients she's been seeing for 15 years and not the ones that she doesn't see for the next appointment. I'm going with that response. It works for me. Though, maybe before 15 years are up, they'll find the miracle.
 
My husband is in a similar catergory - the disease seems to be slow in his body. He has braces too and doesn't wear them. He doesn't like them. He doesn't like how they look or feel. He uses a walker or a wheelchair depending on where we are going. His PT wants him to use the braces with the walker but he just doesn't want to. I figure he is a 58 year old man who can still make decisions on his own so I let it go. I suppose one of these days he will fall and then after a big do to get him up he will wear the braces.
 
The doc has prescribed a brace for his leg and he refuses to get it. He thinks that if he wears one, people will notice that there is something wrong. ;-) Seriously, his denial is better than the river.

the Doc suggested a brace for my husband a year before we went to see about them.
they make them spacifically for the patient, they are light weight and slim, a brace runs under the foot and up the leg, it is secured at the ankle and below the knee with think Velcro straps. you do not see them at all with long pants. and they make walking normal again! no more limp because the foot drop is taken care of.
so if your is worried about what people notice the brace will help him hid his walking problem.
 
I am so sorry about your having to be on this site. But you found a good place. Let me just encourage him to use his AFO. Without mine I would have had to stop walking months ago, instead of just recently. I was just frustrated that I went to three docs about my foot drop and falling, and no one mentioned I could get a brace for that until I went to Mayo Clinic. It would have saved me several falls and a broken hand! My braces help me to be more secure when standing up or 'creeping' along holding on to my walker or furniture, and keep my foot from rolling too bad. Really, they are a life saver.

Re: progression of symptoms. Everyone is so different in this disease. I have found it is best not to compare to others, and just take each day as it comes. Enjoy life, enjoy the fact he can still ride (I used to love to ride and cannot anymore), enjoy all the family time you can. Try not to worry about what comes next. Just do what you can, today. Best wishes for your family.
 
I'm so sorry about your husband. This is my first day on this website and I'm hoping it will help me with all my fears, wishes, etc. My husband has also been diagnosed with ALS. His started with his speech (I would love to hear him carry on a conversation with me just one more time), cognitive thinking and his breathing. I understand the different emotions you have gone through - pain, sadness, denial, grief, anger. His progression seems to be slower than some as it has not yet spread to his lower limbs. But I am constantly watching and waiting. Him - he goes about his daily business like nothing is wrong.

Take one day at a time and if you ever need to talk, post away!
 
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