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missmineau

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Dec 2, 2010
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Loved one DX
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CA
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Sask
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The land of living skies
The famous words, if I only knew then what I know now, ring so true to me. My mom, aged 56, started (that I actually saw, I am sure there are a few she didn't tell us about) around last October of 2009. She had been sick on and off, ear infections, colds, so we thought maybe her balance had been off. Then in January of 2010 she slipped and fell and broke her ankle. The bones had trouble aligning properly so in March 2010 she ended up having surgery and steel plates and pins put in. She had quite a bit of trouble with her surgery (infection, the wound opened). As this was all happening she was getting weaker and weaker. We right away suspected it had something to do with the surgery. By Sept 2010, and many visits to the family doctor, my step dad brought my mom to a bigger center better equipted with neuros, specialists, ect, and demanded answers. The first neuro she saw diagnosed her within minutes. Our world shattered. She spent a few weeks in the hospitals undergoing different test, at one point we were told there was a possiblity it wasn't ALS, but to have it confirmed a few days later. Within days, the family as I knew it had changed forever. We are all going through a lot of emotions right now, we are angry, scared, hurt, you name it we feel it. My mom has limb onset ALS, it is mainly affecting her arms and hands right now, her voice changes when she is tired, she walks with a walker now.........I have done a huge amounts of reading and researching, I am very aware of what this disease will do and has done to my family. I find strength in these forums and reading other peoples stories, its nice to be understood and to say things aren't always ok.......to be heard.
 
So sorry for your Mom, you and your family. We all know what you are feeling and there is a lot of love and compassion on this board. I have not been here long but visit often just to get myself back on track. Welcome and hang in there!. Love and prayers to you.
 
Very sorry your mom was given this diagnosed. Hope you will find comfort here.
 
I'm so sorry your Mom was giving this diagnosis. Remember that you always have a place to turn when you have questions, observations or just need to vent. As cliche' as this sounds, try to enjoy the holidays. Then buckle down and get the information you need to stay on top of this disease. Best wishes to you and your family.
 
It is a gut punch, without a doubt. It's really good that you're reading and gaining knowledge, and that you've come to post here--for most of us this is where we get actual answers to on-going new situations. Missy's encouragement to enjoy the holidays may sound like an impossibility, but do try. The thing is... generally after the initial terror, there does come a time of simply dealing with whatever is there to do, and the important thing is, if at all possible, take today and enjoy what your mother still has.

Instead of thinking about the past as "the good old days" I try to think of today as it really is--Today will become one of "the good old days." So, as you read, attempt to keep from imagining what it will be like. Try to stay pragmatic about what's ahead. Today is what matters, and whatever happens to cause upset, bring it here to the forum, and someone will try and help, or we will simply listen and be "support".
 
Welcome to the club. We are relatively new and still have lots of questions. But we are all in this together, son we can hold hands and cross this road together.
 
I told people, sharing my experience that I cried for months till I came here and read posts and after a while posted. I still cry after that but it is not the same, I gained strength from here. A kind of hope in face of hopelessness.

I was here and then went away for a while. It was good in a way. When I first came here, I went into beautiful thoughts and all and after a while, stark reality remains. And then I realized I am not incognito. I prefer to stay incognito. I tried to re enter using another handle - creating another profile, not out of a need to hide my identity, I just would be able to share more freely incognito.

I watched on hulu, The suicide tourist, coming across it reading posts here. What helps me is watching the carer. I do that, operating, smiling and all, stoic. It could give the impression I am not much touch by it, till something broke that facade. I would go on bravely for months and then suddenly one day find myself crying, unable to stop. The knot of pain inside would not go away as much and as hard as I cried till my face, hands start going numb. I allow myself to cry now. At the beginning I see tears as weakness and do the necessary ones only which means short spells. It is just such a heartbreaking disease.

The wasting away till a strong man becomes an old man, hunched over, skin and bones, frailed and weak.

I tried to tell my husband - when all fails, there is life inside us, life leading to eternity. And one finds it in meditation.

It is just so painful. We have hospice care which is so invaluable. They are almost our only support. He will need speech device soon, I emailed Als support and found they do have one they could loan us.

Missmineau, your mother is only one year older than I. Same age as my sister. That is so young. My husband will be 80 in days. I told myself at the beginning, he has lived a lot of good full years. It is nonetheless very hard. It is like being stabbed by a wound and that wound stays an open wound, our tears easily triggered.

What help me most is courage of PALS here.
 
Thank you all, this has all been a roller coaster of emtions, Im glad to have found a place such as this with such warm wonderful people, I know I will find strength and comfort here.
 
Dear Miss-
It IS a roller coaster ride- at first. Just know that you are still in the early days of diagnosed. with your Mom; and all the emotions you are feeling are normal. But just take a deep breath, and give yourself time to adjust. It does take time, but you will adjust.

My husband was 57 when he was diagnosed., so I'm guessing you are about the same age as my sons- who are 30 & 32. It was so very difficult for them when they first learned of his diagnosed; they were scared too. Just know that you can talk with your Mom about her diagnosed., how she is feeling, how you are feeling. The more frequently you can see her, the better. It doesn't have to be a long visit; just keeping up with what is going on in her life; what is going on in yours. (don't know if you live with her, in the same town, or a different state?) This way you will see her progression- and understand it is not something that will happen overnight. I think this was & is the single most important thing for my sons- they see their Dad at least once a week (I know, we are fortunate!)- and this helps to alleviate their fears- at least for now.

As the others have said, feel free to ask any questions you may have. Someone can point you in the right direction.
 
I remember when my mom fell and I ran to her and she said "sit down" so I did and she lookeed at me like her savior because I am a researcher and nurse and said "I am dying aren't I?" at which I started sobbing and said mom this is bigger than me......
 
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