2nd opinion, confirmed diagnosed, mild case?

[papaw50]

Yesterday, my husband went to Pittsburgh, PA for a 2nd opinion. And, the dr confirmed the diagnosed of als because the emg shows both legs, his back, both arms & his jaw are affected. But, what left us confused was his statement before we left. He said "be thankful your symptoms are mild"...and we're thinking "okay, if this is mild? then what is severe?" So, obviously we've both been in a sort of denial about this disease and the future is surely going to be a LONG journey with much pain & suffering. But, we still are just going to take one day at a time and not stop LIVING. My husband said he'll work for as long as possible. He is still planning on coaching basketball this winter.
My husbands symptoms are weakness in both arms and hands, twitching continuously and fatigue. It's getting much more difficult for him to eat because of the shaking and weakness. It's impossible for him to button his shirts and pants.
I don't know - it was just hard for us to hear that his als is considered mild for now.
What some of you must be going through - I can't even imagine. My hearts just go out to each and every one of you!
Just needed to touch base with the forum today. I just about go on this site every day (except weekends because we don't have a computer at home).
Has anyone been told their als was mild?

 

[gilly]

you've got us!

sorry to hear about your husband's second diagnosed. it's not easy hearing the truth when it's a harsh truth, i know. so glad your husband is carrying on as normal and going about his life. you are so right to say you will adapt and learn to LIVE with the symptoms rather than fall victim to them. i would suspect that's a difficult mentality to maintain but the more you and your husband support each other and stay "in it together" the more you will remember that life goes on and you learn to live with what you're given.

was your husband recently part of a bike tour? i feel like you may have mentioned that to us? i can't remember if i have the right person - if not,,, sorry!

anyway, as for the mild symptoms... i don't know. i am sure all of these symptoms don't seem mild to your husband. i guess you will soon be in touch with the ALS clinic in your area? they are wonderful and so helpful. my aunt has really felt blessed to find such amazing people supporting her through the clinic and teaching her ways to fit ALS into her lifestyle. perhaps your husband can wear pull over shirts and elastic pants? i don't know what kind of work he does but if there are different options for clothing, he might feel better about dressing himself and regaining some more independence.

i know it's hard and you feel overwhelmed but TRUST me... you have lots of time to learn more about ALS and how to deal with it. let each day guide you and focus more on the fun things in life. you'll know when/if changes need to be made or more help needs to be obtained.

love to you and your family.
nicole

 

[Lisa Lane]

The last time I went to the Dr. he told me I was doing better than most and like you I thought"What". I was diagnosed in March. I started having problems last fall ( foot drop) and as late as May of this year I was still walking. Now, I am using a scooter and waiting for my first trip to the ALS clinic. We decided to get the scooter because I was so tired at the end of the day just trying to walk a little that I was falling and was just a wreck emotionally. Now my right arm is getting weak. I can't wait to get started in the ALS clinic because I am having a hard time wrapping my brain around all my and how fast I think it is progressing. I hope it slows down. Maybe this is how it works. Maybe things happen fast, then they slow down for a bit. I hope so. Does anyone have an opinion about the progression of the disease?

 

[Al]

Some of us have been told our symptoms are mild or early stage but it doesn't make it any easier. You and your husband seem to have the right attitude though. That's what's important. I haven't been able to do pants and buttons for quite a while. Key rings on the zipper help for some when it is P time. I can still do belts so just undo the belt and leave everything else and pull em down. Not to be done at a urinal at the ball stadium but it works most of the rest of the time. You will learn to adapt or just ask here. Most of us can be pretty inventive. If you haven't read the activities for daily living manual in the sticky at the top of this topic page it's got a lot of tips and might be helpful. AL.