I have signed on to some ALS sites so I can talk to others that are facing what I am. I was in total shock when the doctor told me. I have read many emails from wonderful and loving people. This has helped me so much. I want to stay positive and try to be the best that I can. I know I will have many things to face, but I just pray with God's help and strength I can do this. At the moment my legs are weak. My right leg more then my left. I wear a brace on my right leg. So I guess I just would like to hear from anyone that would like to send a postl my way. :angel:

CookieDD ,
Hi, just read your post and although I don't know anything about ALS - I do know a lot about people. I know you are hurting and scared and lonely and you need a lot of support from a lot of people. You need a lot of people to write to help you keep your chin up. Well soon ,a lot of people will be messaging you and there probably won't be any room for me to get through to you. Just remember that I was the first. Cookie,
can you tell me what ALS is ? ( I think it means Arterial Lateral Sclerosis ? ) But can you tell me what it has done to you . I hope it's o.k. to ask you that .
I pick up very good vibes from you. You're a neat person Cookie. I'd like to hear from you. Where you at? I mean like - at home,or a hospital ?? I'm sorry I don't remember
I get temporary blank places in my mind - short term memory loss. I should call it quits for tonight before I pass out . I've been up since 3:30 a.m. again and it's been a LONG
Day. I just didn't want to quit until I wrote you to say HEY COOKIE, I CARE !!!
Hope you have sweet and peaceful dreams. EgyptKaren

CookieDD ,
Hi, just read your post and although I don't know anything about ALS - I do know a lot about people. I know you are hurting and scared and lonely and you need a lot of support from a lot of people. You need a lot of people to write to help you keep your chin up. Well soon ,a lot of people will be messaging you and there probably won't be any room for me to get through to you. Just remember that I was the first. Cookie,
can you tell me what ALS is ? ( I think it means Arterial Lateral Sclerosis ? ) But can you tell me what it has done to you . I hope it's o.k. to ask you that .
I pick up very good vibes from you. You're a neat person Cookie. I'd like to hear from you. Where you at? I mean like - at home,or a hospital ?? I'm sorry I don't remember
I get temporary blank places in my mind - short term memory loss. I should call it quits for tonight before I pass out . I've been up since 3:30 a.m. again and it's been a LONG
Day. I just didn't want to quit until I wrote you to say HEY COOKIE, I CARE !!!
Hope you have sweet and peaceful dreams. EgyptKaren
Thank you so much for sending me a messagel. And yes you are the first to answer me. Yes I am scared and your right ALS is Amyotrophic Lateral Sclerosis.To make it short it means the brain is not sending messages to the nerves to tell the muscles to work. You asked what is wrong with me. My right leg is weak and I wear a brace. So I walk very slow. I just thank God that I can still walk. Do take care and thanks for caring.

Hi Cookie,

My name is Dianna and I lost my Mom almost 5 years ago to ALS. {removed} 2 1/2 of those years- I spent working with hospice and I had the priveledge to work with all of the patients that had ALS.
I would encourage you to visit a local support group in your area. Where do you live? and if it is a small town- What major town are you located by?
I started volunteering my time as the facilitator (leader) of our local ALS Support Group 6 months after losing my Mom.
I have become unable to work due to the unpredictability of my symptoms (severe allergic reactions and Meniere's Disease((affliction of the inner ear that causes horrible ringing of the ear, pressure in the ear, nausea and vomiting and the worst severe vertigo- a dizzy spinning sensation in which you have no control))- but I still manage to volunteer time with the group.
Please let me know if you do not have a support group close to you. {removed}
Do you have support from family and friends?- this is so important with this disease.

My prayers are with you,
Dianna

hi cookie

i am with you in your fears and shock of als. although i was then dxd with lyme disease. i encourage you to visit the lyme threads and ask some of them for sugestions from their misdiagnosis with other diseases as well, very common.

good luck and God bless you.

jon

my husband was diag. with als in nov 2004. his first symptoms were noticed a year ago, 3/04. his is all in his arms and hands right now. I've learned alot from these boards and have had a lot of questions answered thru them. i hope they help you like they have us.

Thank you so much for sending me and email. I live in Little Rock, AR and fortunately I do have a support group and also joined MDA. My first support group visit is this Sunday and part of me wants to go and the other part doesn't. I am afraid I might get depressed when I see what will happen to me. Right now I can still walk with the help of a brace. I am so sorry for the lost of your Mom. I lost my Dad four years ago. My Mom is now living in back of my home. I do have wonderful friends and family to help me this is a comfort. Do take care and once again I appreciate your help

Hi Diane,
Thank you so much for your reply to me. I am so sorry about the lost of your Mother. I lost my Dad almost five years ago and still miss him everyday. I live in Little Rock, Arkansas so fortunately I go to a large hospitla UAMS and they do have a support group. I also signed up with MDA. This Saturday they will be having a support group meet. I am just a little learly of going because I know I will really see what I will be facing then. I do have friends and family. In fact my brother who lives in upstate New York made a special trip to see me when he found out I had ALS, how sweet of him. My Mom lives here six month of the year but will be moving here full time which to me is a big blessing. Thanks so much for answering my post. Do take care Diane.

Thank you for your reply. I am so glad you don't have ALS, people have told me about getting tested for lyme disease, but, in my heart I feel the doctor is right. She is a specialist in this field and deals with it every day. Thank you for your advise, I wish it could be something different, but unfortunately it's not. Take care and thanks again

Diane I am not sure how do send back something to you. I have tried, let me know if you have gotten anything back yet. Please forgive me this is new and I think I have sent you two already but they say about the same thing. I am just sending this to see if you received anything that I sent you. Oh dear.....


{please send by posting on the boards for all to share and benefit - Healthboards.com is for public and anonymous use only - no private message or email is allowed}

Cookie,

{removed}

I truly wish you the best and hope I can help you some on this forum.

Thanks,
Dianna

Thank you Diane, I wish I knew if you were getting my reply. I sent you one concerning your Mom and telling you how sorry I am and talked about my family some. Did you get it?

Thank you for your help Jon, I am not sure you got my first reply. Not sure I am doing this correctly. Oh well, do take care.

Cookie- If you just look on this posts page, you will see if your post went through. As I just found out earlier- they will not allow instant message to another person or even e-mail- and they pick through the posts with a fine tooth comb to make sure any names or too personal information is not sent though.

Thanks