Can it really be anything else other than ALS?

[patricia1]

I guess I am going by my own experience, maybe I was a happy moron,I am more scared now that I know, then when I was waiting . Maybe because I never came to the forum while I was waiting or maybe I was a ostrich with my head in the sand ,but like I said Now that I know I am an emotion cripple thinging about my future,So whats worse. You all just dont get it And I am sorry about that. ALS is rare and very few people on this forum have it More dont then do I was trying to give you all hope I guess I came on too strong and you all are too consumed with ALS .GoodBye Pat

 

[CindyM]

Hello everybody. I have heard it said by more than one PAL that they are glad they spent the months before DX enjoying life. This is my goal, too. Not easy and some days I can’t do it but it is still my goal.

At the risk of alienating both PALS and my friends who are un-DX’d, I would like to suggest we strive for more tolerance. Yes, if you have been told you have MND then of course, from your perspective, anyone who has not been told that is lucky. And if you are falling apart weekly for no apparent reason you will be frantic.

We each have to find our own path. And individually, we will be more successful finding that path if we worry less about what some other poster has to say about the way we handle our experiences, don't you think? At least it seems so to me. Cindy

 

[Al]

Hey guys. We are all different here. As different as these diseases are to each of us diagnosed or not. I think we are losing sight of what David and I kept this site going for. It is about support, information and friendship so that each patient or caregiver can know they are not alone. It is stressful having something going bad with your body. If you know or don't know what it is doesn't make it any easier. We're losing sight of that. Could everybody take a deep breath and try to relax for the weekend. Thank You.
AL.

 

[mamaoftwo]

Well said Al!

 

[myooshka]

I think what we should be dong is supporting each other in our time of need. Not trying to play doctor and tell each other, you probably have this or that when none of us knows. We are to be here for each other in this scarey time. We are all scared. we need support, not judgement.

 

[JenniLee]

Hi!

Mama;

I feel your worries and fears. As you know, I have 2 precious ones too.My diagnosed was very quick. In fact, I made the appt to see a neuro, not my AP. I thought my speech was from an inplant procedure I was in the middle of. And when I mentioned to my AP that my finger wouldn't straighten, she ASSURED me there was NO major problem and I probably had a pinched nerve. HUH! I really thought I had a problem that I could "solve". What I have come to learn now is I may not be able to SOLVE this one; I have to work with it. I know how stressed you are, so my advice is maybe you need an anti-anxiety, for a little while just to take the edge off. If it might be the birth control, go off of them with the help of your OB. You need to start somewhere before u go anywhere...my Dad keeps telling me to start in my head....get that focused, find a way to control the anxiety, and FIGHT! So, please, talk with your doctor about your anxiety and the pill. I understand your fears..and no matter what u r not alone. I wish you health & peace!

Love, Jen

 

[ltr]

Jen - it is so nice to hear from you! Annmarie and I were wondering how you were doing just the other day. I know this must be a tremendously rough road for you, but are you coping well and do you have a good support network? Please stop by once in a while so we know how you are. We are here for you.

 

[brooksea]

Mama,

It is truly a burden facing the unknown. Since my husband was diagnosed I feel like I've been waiting for the other shoe to drop, frozen in time, not being able to move forward with my life. It is indeed scary to think about the future when you know you or your loved one may have a serious illness.

As far as the kids go: my son is now being very defiant and "acting out." He knows daddy is sick, but obviously doesn't understand nor could we expect him to understand, he is only 7. But he becomes infuriated with his dad when he cannot do things with him that he used to, things my husband will promise to do but then finds he doesn't have the strength. You cannot blame either of them. I thought I would be able to deal with anything that came up with my son regarding my husband , but now find that it is harder than I thought it would be.

I have to believe that there is a purpose for all of this and that our lives as they have played out will have an influence in a positive way on our son.

What I am trying to say Mama is that I feel for you and hope that your physicians will find out what is wrong with you and that it will be treatable.

Everyone that is affected by ALS has to dig deep sometimes to find courage. I hope everyone here can find theirs.

 

[ltr]

Jimmer - I have the same problem with my young teens and 9 year-old. They see me, I look the same, so when I can't do something I planned on they are disrespectful to me. They just don't understand, no matter how much I explain. I had them read about it, but I don't think that deep down they believe that that is me. They may even think this is all something that will just disappear. My 15-year-old daughter went to clinic with me last Wednesday and sat a chair away from a man with als. This is the first real dose of what neuromuscular illness is like that she has ever seen. She was heartbroken. She saw his atrophy and that he couldn't get up out of the chair without rocking many, many times. She heard him tell a clinician that "it doesn't matter, I've given up". I don't know if this changed her any, but she told me about it, so it left an imprint.

To a 7-year-old, probably none of this is real. Because you are such a caring and strong person, I know you will be okay with him. My heart just breaks for him.

 

[brooksea]

Leslie,

Don't know if you're a rock fan, but I thought of this song while reading your post:

(can't remember band's name only singer Axel Rose) "Sweet Child of Mine."

My life is turning around since my husbands diagnosed and I have to look at it like this was meant to be and I can handle anything thrown at me. I would not change anything, even with the problems we face now...(well I wouldn't wish my husband had ALS)...but it has opened my eyes to new possibilities and my husband is beginning to think "larger."

I wish I could wrap myself around all those suffering with this and any debilitating disease and "make it all better!"

Please let us know Leslie how you and your children are doing. Your input is very welcome.

 

[CindyM]

Hi CJ.

Everyone that is affected by ALS has to dig deep sometimes to find courage. I hope everyone here can find theirs.

What a great wish for everybody! Thank you for that. I hope you are able to get some rest tonight. Cordially, Cindy