thinking about all that I was makes me sad

[happy]

When I think about my life and all that I was it makes me reallly sad. i used to travel with Reebok internationaly performing for them. Because I was beautiful and muscular. Now what is going to happen to me? Is it too much to say that i am scared. No, I don't think so..I used to be a ble to cycle for miles and wipe out my competeors..I was invinsiable what is going to happen to me? I am scared. Now I can't even breath...so sad..

Not so happy

 

[Kevinski]

Hang in there

Hi Kevin from Calgary,don't or try not to dwell on what will happen to your body.Do what you are able to now and cherish that.And no matter what happens you will still be beautifull ,no matter what you can't or cannot do.Ive been Dx since june of last year am 48 have always been in good shape.But I am lucky my progression is slow,but have lost my ability to talk.So i still do the things i always did ,but i do get fatigued easier.In june did a 110 km bike ride for ALS with my kids.So I try and remain positive ,a person has to or you will go insane.So my best advice is Carpe DIem (Latin for seize the day).I have coped pretty well with losing my speech and having to quit my career.So whatever this disease wants to throw at me I will fight and hold my head up high,and try my best to cope with different challenges as they come my way.So even having this disease ,live ,find a reason to smile.Its hard at times to be sure,but for your own sanity try,and for all those that are close and love you.....hang in there Kevin...Drop me a line if wish to

 

[lostinlouisville]

Happy

I wish I could give you your happy back. I can pray that you will find peace that passes understanding. It's a great gift. I looked at the pictures of your friends and family and they made me Happy. I know I can not understand what your going through but want to encourage you to press on with a smile on that beautiful face. I know you can find alot of people here willing to cheer you up. If you need to chat PM me and I will be glad to be there for you.

Renee

 

[wright]

What on earth is going on here? You haven't been diagnosed with ALS and an ALS specialist just told you that you don't have it (your symptoms aren't consistent with it).

I also saw another thread talking about BIPAP . . . all because you're a little short of breath? That shortness of breath can be caused by so many things: anxiety (which you most certainly have at the moment), new meds (which you just started taking), lack of sleep (which I'm going to assume is happening to you), etc., etc.

On top of it all, that shortness of breath you are now complaining about happened fairly suddenly. That isn't how ALS works.

Your next neuro appointment is just around the corner. Please do your best to remain calm in the meantime.

 

[rose]

Robin,

The mind is a powerful thing. It is our strongest coping tool available to us. We can use it to conquer our fears, or to be ruled by them. An example would be when you used to compete with your bike riding. I'm certain that you didn't start out a race thinking you could never make it! AND perhaps there were others that may have been in as good of shape as you were, but they weren't as confident or determined as you. ~ And you were able to leave them in dust!

Your doctor, that is an ALS specialist, has told you he doesn't think you have ALS, and in hopes of ending your fears is having a whole body EMG performed. Wright, who has as much, if not more knowledge than many doctors on this subject, doesn't think it sounds anything like ALS.

I've been mulling over ideas, searching for something that would help you get through the remaining time until your test is done, but I worry that after your EMG comes back with nothing diagnostic for ALS, that it won't assuage your fears either.

Usually, when fears creep in, I've found the best way is to look completely in another direction, away from myself. I think maybe that would help you too, but as far as something to busy you, its not like you could possibly have much spare time, between your children and your job as it is.

I do think that if you were able to stop searching and researching MND, heck, any disease, and take that same amount of energy and time and direct it to another specific subject, that you would be bound to have a better outlook on life. I'm serious, total up how much time you spend researching and fretting over symptoms, and allot it for something else.

Other than that, I don't know what to say that hasn't already been said.

You know you have many friends here that wish only the best for you.

BIG :arrow: (this is a smiley hug!) ( (( )) ) for you. take care

 

[awieleba]

Hi Happy,

I was also thinking about this all weekend. As my symptoms seem to get worse and not better I am having a difficult time as well. When I think about my life and all that I was it makes me sad to. I miss playing competitve tennis sooooooo much. My husband does not understand, he says 'lets go hit the ball around', well, I cant hold my baby for more than 10 minutes what makes him think that I can hit a ball? I dont want to exhaust my energy on trying to play tennis. Plus, I dought that I will ever be what I was so what is the point one) and I had to put her down, and after I was holding my glass and my hand was shaking and my whole arm felt bruised. It made me soooo sad, the thought of not being able to carry or hold my kids is like kicking me in the stomach. At the pool on sunday, same thing, my arms are sooo tired from holding my baby. It is breaking my heart that I cant hold her the way I want. My husband says then dont hold her as much, well, I wil take the rubber arms after because I am going to hold her as long as I can!

I dont feel like I have alot to say to cheer you up, and for that I am sorry. I just feel the same way that you feel.

Rose,

I really marvel at your abilty to reach and help comfort those who dont even have a diagnosed yet, and you do. YOu are such a strong lady. I wish that I was a stronger person. If I was, then maybe I could handle this better.
You are right about the mind. mY husband said the same thing this weekend, that what we are is our mind and not our body. It is still hard to break away from that and maybe it is a process of letting go. Again, it iws just so hard with my young kids. I really only break down when I look at them.

I try to live in the moment to moment or really just plan things for like a week at a time. It was hard at the boys school, I want to sign up for school comittee's but i am afraid that I wont be able or have the strength. That really got me down. I can let go of tennis or working out, but if I cant be a great mom or wife, whats the point?

WoW, latley I really know how to bring a thread down.......sorry! I am going to try to get 'my' happy back!

april

 

[happy]

Thank you to all for your great support and concern...it means the world to me right now.Sorry for my moment..it comes and goes

 

[olly]

happy/april

this is from someone who has had mnd for 9yrs now.
there have been many times i have felt like giving up but i refuse to,i am a fighter.
my mobility is down from 110%(being i was very fit) to 40% on a good day,but if i have it in my mind to do something i find a way to do it(i am very stuborn like that).
a posative attitude is vital and can do wonders,stress can make symptoms worse.
i am not saying i don't feel sad that i can not do most things i used to but like rose said i have had to adapt and find things i can still do.
you both may have many many years of mobility left whatever your eventual diagnosed is.
live for today,do what you can to the best of your ability today.
forget about tomorrow or what you will or will not be able to do,lifes waaayyyy too short.
i know all this is easier said than done,but it's true and it works.
take good care.
caroline:-D

 

[awieleba]

thanks caroline.

I do hope have 9+ years......

 

[patricia1]

I am going on my 10th year and have seen many changes in my life I just keep going and try to keep positive.Its my only reason I think for surviving this long

.
Happy
we all miss what we were. I can give you a list of what I lost from ALS you cant dwell on that.



Keep Positive.


Pat1

 

[happy]

Pat and caroline, you are inspirations to us all...be wonderfully blessed.

 

[awieleba]

you are right, you just keep going with it.

I think in the begining, it is hard to wrap your mind aournd these things. I think/hope it will be easier when we get distance on what we were and get closer to what we are and what we will be. The longer I dont have the physical endurance the more it seems that I never had it. I am getting use to not playing tennis, almost like I never did. As for my kids, I know that kids this young are very adaptable to why your body may or may not be working. I feel guilty if I cant do things but I find that what my kids treasure most are things that I can do......watching them--they love playing star wars for me and really just want me to see all thier moves. OR cuddling in bed with them watching a movie or going on the computer and playing webkinz! OR getting a flash light and telling scaring stories in the bunk bed. I even drive the golf cart and watch them play. I try to remind myself of these things when I want to lay in bed and cry.

You are all a blessing, as many of you have been down this road and it is so much of a comfort to have you all~~~~the one's that have went before me and the ones willing to share thier life so that I may feel better or learn from something you all can share. We are lucky that we live in this time of communication.

take care all,

april

 

[safari101]

Keep on Living and encouraging

When we are struggling it is such an alone feeling. Having control of our lives is so
important to us.

I do not know if this helps, but there are some good things that have happened to me.

By having a long term illness. I have noticed more about people. Seeing folks who struggle that I have never seen before. Like at the check out counter.

Learning to accept myself on the inside has been a wonderful gift. A daily job by the way. I do not know if I ever "will arrive" with full accpetance!

Also, I have looked for things I can still do. I am just finishing up a children's book. Go to coffee with my wife more. Hug her more. Yeah!

Every day is an emotional challenge, but I try to focus on what I can do and ignore what I can't.

I sure hope something I have mentioned lifts your day a little.

God Bless,


I am going to pray for you today.

Jim

 

[Zaphoon]

Kevinski & Wright,

I love your responses on this thread. Kevinski, your attitude towards your disease is encouraging to all. Wright, I saw a post of yours on another thread, too, I really liked pointing out peripheral neuropathy as a possibility over ALS for many on this forum. Shucks! That could be me! Anyway, I love the logic both of you have shown on this thread.
Thanks for some great postings!

 

[happy]

Jim and April you guys are awesome...april I love the way you are able to express yourself I wish I could say the way I feel the way you do..I know that we have not been diagnosed yet but when a dr throws out a possibilty like Lou gerhigs its kinda like you die in that moment. Jim I respect your strength..you and others here are my inspritation everyday. I don't know how you do it but your hearts are so powerful and uplifting..I pray for you my friends...no matter what, we will be like those we associate with..strong, couragous and inspirational, we have to.