New? Introduce Yourself - Say Hello

[CindyM]

Hi Lou. Welcome to the forum. Caregiving is so overwhelming, don't you think? I wish you could get help with hubby since if you get worn out everybody suffers. Please write often and let us know how you are doing. Cindy

[Icanmanz]

Hi,
I'm new. I'm Lou. My husband has Als . He has been ill for 5 years[4 since diagnosis] We have three grown children.
I live in a big three storey house in the country where we have renovated a sunroom for my hushand. It is a lovely setting but I am isolated and becoming too tired to take care of things. He cannot move anything but his shoulders and toe. No bulbar or speech problems. He is on a bipap when he lies down. I don't know what to expect in terms of progression of the illness. He won't talk about his illness.

Our children cannot help much and I do not have many social contacts such as a church group to help me. I want to keep him home but I am quickly burning out. I have lots of great help from the Access Center but when they are not here it is hard alone.

I am feeling grouchy and irritating my children which increases my isolation. I feel like such a not nice person.I'm irritating my husband who just wants to have positive things around him- understandably. He will not consider going into a home even for respite for me.
Anyone else ever been here, done that?
Even writing this makes me feel guilty. Crab, crab crab. Help me be more positive. Thanks Lou.




Hi, Lou! Just read your post. You wanna know if anyone else been there and done that? Yeah, i been there and done that. I was a Cal to my late son, who succumbed to als on June 3, 2007. I am so sorry to hear that you feel the way you do. First of all, let me tell you may God bless your husband. It is not his fault he is in the shape he is in, and I am sure he hates being a burden. I took care of my son, and I am 65 yrs, and I never felt he was a burden, I never griped, because I knew that my son wasn't going to be here forever, and I didn't want to live with that guilt. All I can say is God bless your husband! Take it from there, friend!


Irma

[jimercat]

Lou,

As a caregiver to my husband with ALS I can understand your frustration, although my husband is not as far along in the disease as yours. Please feel free to come to this forum for support and to perhaps release your anxieties.

Please do not feel guilty about the way you are affected by the burden of taking care of a loved one. It is not easy.

I hope that you can find support to ease your stress. Maybe if you had someone come in to help once a week and then twice a week etc.. he would get used to having others around. And who knows, he may even enjoy seeing a new face.

[Ran]

Thank you for taking the time to visit us at ALSforums.com.

Please take a moment to sign up an account and post a message here saying hello.

We hope all of our members find the answers they need; if you can't find what you're looking for, don't be shy, post your question and someone should be able to help you :)
Hi to all, i'm new here - type very slow with this on screen keybord! I'm from SA.

[Icanmanz]

Hi to all, i'm new here - type very slow with this on screen keybord! I'm from SA.


Hi, Ran! Welcome to the forum! Are you a Pal or Cal?

Irma

[jimercat]

Ran,

Please feel welcomed to the ALS forum. So sorry you have had to seek us out.

Hope that you will be find support and inspiration from all of those here.

[MtPockets]

Welcome to the forum, Ran, and Lou and all the new members.
Jump right in and let's talk about anything that may be bothering you or any questions you may have. Glad you found us, but sorry for the reasons you are here.
God Bless
Capt AL

[hkohlman]

Hi lou, Welcome to the site. I am a caregiver for my dad. He was diax. about 1 year ago. He is slowly loosing the ability to move also. This is vey tough for all of us who have to deal with this. I found that a simple walk around the house outside sometimes clears my head so I can be positive around my dad. Maybe this will help you also. Oh and dont forget the choc. bars and pepsi in the day. And a bud light or 2 at night. Best of luck to you and your family.

Heather

[janf]

Welcome Newbees We Are Sorry You Have To Be Here But No Better Place For Love Care And Prayers Never Give Up Remember God Cares Go To Him Crawl In His Lap He Is Your Father And His Angels Are Here For You. Love Too All Jan

[rajiv]

Hi,

Just signed up and thought I would say hi. My mom in India was diagnosed with MND in Sep 2006. At this point has lost most muscle strength in her legs, back and abdomen. Speech is almost gone and is now having trouble breathing. Right now we are looking to make some decisions regarding tracheostomy and invasive ventilation.

rajiv

[jimercat]

Hi rajiv,

Hope you can find the help you need for your mom.

[bufbon2]

It's OK Lou, we all feel this way at times. My brother has had ALS for 20 years, there are times I cant stand the smell of the suction process which is my signal to take a hike and GET someone to take over. Listen to your mind, it will tell you when you need to take even a 5 minute break but mostly, let your heart tell you what's right. Love drives us all and helps us find the energy, emotional strength and patience to forget being crabby and irritable. Do YOURSELF some kindness, find a local church group even if your not affiliated with a faith, find one. They will welcome you with open arms and help you in anyway they can.

Best wishes and take comfort knowing your not alone, we are all doing our best.

[brotherlylove]

Hi and thank you all for this support forum.

My older brother has ALS. I was wondering about obtaining a lift chair and possibly the chair that makes into a bed. He is on short term disability for now but the ALS has progressed so fast (6 months) I fear he will fall out of bed. My brother wants his freedom. I respect that. The other day he sat down in his lazy boy chair and couldn't get up. He spent over 12 hours there as he couldn't get to the phone. Finally he used his wheeled walker and propelled hiself with his knees to the telephone. My friend Darling helped him to his feet. His bed is now on the 1st floor of the house but I fear he will loose balance and fall.

1. Will medicare pay for a bed?

2. Whats the difference between medicare and medicade?

thanks in advance!

BL:confused:

[jimercat]

brotherlylove,

Welcome.

I'm very sorry your brother has ALS! I know he must have ben so frustrated to have been stuck in his recliner!!!

I can only answer one of your questions: You qualify for Medicare when you are approved for SS Disability. Usually they will determine at the time you apply, if you are qualified for Supplemental Security Income (SSI) and Medicaid, which is a program for people with limited income/assets.

Perhaps someone else can answer your question about the bed.

[Mimimi]

Thank you for having this site. I really didn't know where to turn until I found it. My husband was recently diagnosed and right now we are playing the denial card. His symptoms are progressing but he will not give in yet. I do admire him for that but it is a struggle keeping it to myself. Our children do know but so far we have been able to hide it from the rest of the world. He is 63 and I am 61 . We had planned for a very comfortable retirement but that will no longer happen. I read the notes from the young people who have been struck and my heart goes out to them...I feel selfish feeling sorry for us but it is what it is and we will handle it somehow. Just wanted to say thank you for being there. I read your posts everyday. Mimimi

[jimercat]

M,

Very sorry you've had to discover this site. welcome and don't feel guilty about younger ones getting ALS. I have to look at it like a new window is opening and I must go thru the frame to get to the other side, just as you do.

It is devastating to realize that all your hopes and dreams are down the drain, but things change and make up for all of that!

I cannot tell you how this disease has changed our lives, and it has been very difficult. Don't let anybody fool you - it is hard. But you strive to make the most of what you've got and lo and behold things happen that you never would have thought about pre-ALS.

I wish you and your husband the best!

[slmm97]

Newbie here from Washington state. My boyfriend's mother was diagnosed with ALS, and she's moving in with him soon. It's a strange situation. She's always been manipulative with her children, but now that she's sick they're afraid to call her on it. (There have been many, many guilt trips, lately.) Things will only get crazier when she moves in.

I've become the person my boyfriend vents to, which I'm glad to do for him, but that brings stress too, because there's only so much I can do to help him. So hard to watch someone I love go through this. How can I possibly complain about issues in my life when he's watching his mother suffer?

If anyone has suggestions on how to care for the caregivers, I'd be glad to hear them.

[lsherman]

Hi- I am writing about our mother. About 6 yrs ago this woman, who has always been extremely healthy, started having trouble "finding words". She has been to Boston about 6 summers and this summer after being diagnosed with Apraxia, and Aphasia, now has had a diagnosis of Bulbar ALS. If you google it, she has all the symptoms. We need to know what to expect, does anyone know how long this disease lasts? So far she has lost all her speech, she has lost about 25 lbs, she still has her intelligence. Lives alone in FL, but soon will be going into Assisted living. She drives, it has only affected her from the chest up. Meaning her breathing and lung capacity are slowing and seem a little labored. She has the crying thing, and she moves like she is about 90, meaning very slowly. She walks a little each morning in her neighborhood, but other than that, she drives and watches TV and reads. I thought ALS took hold a lot faster, I have never heard of this Bulbar form???????????????? Thank you for listening, I would love to hear from anyone who knows about this form.

[CindyM]

Hello lsherman, sorry to hear about your Mom but glad you found us! We have guite a few members here with bulbar onset. Feel free to ask anything. People here are very supportive and knowledgeable. Cindy

[kathmc]

Hi Al,

I haven't visited the site for a long time & didn't remember how to contact you directly. I recieved a private message throught the forms site today from a new person. Her message was much like the spam now common that carries a computer crashing virus as a gift for opening. I came here first & her user name in not listed on the member roster. Is there any hacker infilteration of the form site? The name I was looking for was "dharma". If you say she is legit I will answer.

[robinswife]

Hi
My name is Judy,my husband Robin was Dx 04/2005 .When we found out what he had we did'nt completely understand the full impact this was going to have on us.He as no use of is limps now and is starting to talk with a slur.I am not sure what the next step might be .I feel with this forum I receive a little more understanding .I thank everyone in advance for all there support and info.I'm sure i'll be back soon to vent more.
Judy

[liz]

Welcome, Judy. There are lots of caregivers here to share practical tips and moral support. Make yourself at home. :)

Liz

[Al]

Hi Judy. We have a few members in the area you are in. Hope we can be of some help.
AL.

[Peg B]

Hi Al,

I am sorry but I still don't follow. What area is Judy in and how do you know? Please help me with this. Thanks, Peg

[Al]

Right under her name it says Surry BC which is a suburb of Vancouver. Under your name it says Northville Michigan. Also if you click on the person's name and then view profile it will tell you more about the person.
AL.

[jimercat]

Al, I'm with Peg on this one. I've tried switching browsers and I still don't see where people are from, not even in their profiles. Maybe the moderators only have access???

and welcome Judy, sorry you had to find us. my husband also has ALS and this forum has been very helpful.

[liz]

Same here. It's just not there and not on people's profiles either.

[Catrina's Angel]

Hi. I am here because a dear friend of mine was diagnosed in 2004. I have assumed the role of caregiver for alot of reasons.

I am finding myself at a loss and worrying like a mother about her and decided some feedback from others going through the same thing would be helpful.

I look forward to talking with you all.

Jerri

[liz]

Welcome, Jerri. I read your other posts and you really are an angel. I think you will find this forum supportive and informative.

Liz

[taylorshannons]

Hello to everyone here...my name is Shannon I am 42 a wife a mother to four ages 20,17, and twins that are 8...I have been diagnosed with Als. The disease is not completely new to me I have watched my dad, grandfather and three aunts pass on from als..all in different ways all with different symptoms there are so many choices to make and they are hard this site I can already see is going to be good for me I am now in the process of trying to make out my medical directives and it is so hard to make the decisions because no matter what you do not everyone will be happy with my choices. I know I will have questions even though I have watched this disease tear down so many loved ones...and I hope I will have knowledge to share with everyone also because I have witnessed it so many times. Like I said earlier I just wanted to introduce myself and say hello...
Shannon

[Onemore]

Hi.
I am writing from Spain.

I was only reading, but it seems that i have to write 50 post to have privileges to see some photos. So, i am writing now.

[Al]

Hi Shannon. Welcome. Sorry you and onemore had to come looking for us but hopefully we can help each other along the way.
You do not need 50 posts anymore. We made the number smaller so that people wouldn't post useless posts to get their numbers up. You should be there soon.
AL.

[MtPockets]

Welcome to the forum all you new members. I hope you can find comfort, while you under go this period in your lives. We are all glad to help in any way we can to make it easier for you. Just jump right in with any questions or concerns you may have.

God Bless
Capt AL

[jimercat]

Hi Shannon and Onemore,

Very sorry you both have sought the forum out. Hope you will information and support here, as I have.

Shannon, how difficult your situation must be. I'm hoping something will be available soon to at least treat this horrible disease and PALS will be able to live longer with better quality of life.

[isc20753@optonline.net]

:)Thank you for taking the time to visit us at ALSforums.com.

Please take a moment to sign up an account and post a message here saying hello.

We hope all of our members find the answers they need; if you can't find what you're looking for, don't be shy, post your question and someone should be able to help you :)

Hi, this site is new to me. I was 1st diagonised with PLS in May/06. Recently started to go to Columbia Presbytarian in NY. I was told that it is one of best clinics in the country for ALS. They diagonised with ALS now. It started in my throat I can not talk any more.I use a augmentative communication device to talk. On Tuesday I went to a conference for disabled people in New Brunswick New Jersey. It was really nice. Very postive and uplifting. All the speakers were disabled and they had workshops all day. I do not know if you know that 70% of disabled are out of work and live in poverty. I have not worked since I got sick. No body will hire me when they find out I can not speak or barely walk. Also I am bipolar, so it makes it harder. I have not given up. I have a strong spirit. I try so hard to believe that
I will die of old age not ALS. I am such a good guy. I still can not believe this has happen to me. I have alot more to say but say it for another time.

[isc20753@optonline.net]

David,

Thank you so much for to you and all others that have made it possible to set up this site and transfer our old data.

This is more then a site to me this is my second family. Since dad has been diagnosed with this disease this is where I come on bad days to talk, good days to help others, and everyday to read....

Thank you Thank you Thank you...

Please advise what I can do to help this site in any way... Monitor, Research on certain things that are going on... Anything I will do it just let me know.... Perhaps we can add a thread that is titled unitque and everyday items to help those with PLS or ALS with Day to Day living... I can add to this and research... Whatever you let me know...

Jen

Hi my name is Irwin. I had PLS since June of/06 and they changed it to ALS. This is all new to me. I still can not believe this has happen to me. I can not talk and It has spread to my right leg and my balance is very bad also.

[jimercat]

Irwin,

Sorry you had to find this site, but welcome. We all try to suppor t each other and I'm sure you will help us out in that respect.

[liz]

Welcome Irwin. The diagnosis is a huge blow, I know. It definitely takes time to absorb such news. Hope you find the forum helpful.

Liz

[jenndeery]

Hi, I'm Jenn and I am a new mmember - came across this site today while researchign the disease. My grandfather died from ALS, mom probably has it and I am starting to recognize some symptoms...going to get the tests done soon so hopefully its not ALS but if it is - well, then I want to be prepared. Thank you in advance to everyont for being open and honest - that alone means a lot!

[CindyM]

Hi Jenn- welcome to the forum. Sorry about your Mom. I hope you won symptoms turn out to be something other than ALS. Cindy

[jimercat]

Hey Jenn,

Very sorry ALS runs in your family! Truly hope you are not next.

but, welcome to the forum. Hope you find support here.

[isc20753@optonline.net]

Hi Jenn thank you for responding to me. I went to Columbia Presbyterian in NY. I they have a center for ALS. I saw many doctors. Speech Therapist, Path which he will have to have a Feeding Tubeput. Also I saw a Physical Therapist. Social Worker.
As I was leaving I fell. I am very sick I am dieing. I do not want to die at all. I still can't believe this has happen. I life is destroyed and over. There is no cure. I do not understand. Any beleif in some thing is over. I wish every body to get healed of ALS/PLS.

Bless you all

Irwin

[Shasta]

Hi all....I'm new to the site and may not know my way around but I wanted to let everyone know about how fantastic the walk was to raise funds in Indianapolis. Must've been about 4,000 people there. I was impressed at the turnout. I now wear the t-shirt with pride. Don't know how much was raised. Maybe someone can keep us informed on that.

The highlight of the day was when a lady brought her 6-7 year old son in a wheel chair and asked if he could pet my dog. Made me feel like, although I came alone, I was there with someone that wanted to be around me. I was so happy I could share my dog with him because everyone usually is so scared of my dog. He's a very well trained Staffordshire Bull Terrier that looks like a Pit Bull and most people steer clear of him and he's such a little sweetie with people. As his mother stroked his hand over my dog, my dog nuzzeled his snowt in the boy's side. I could see his smile sneak out. That little boy brought a tear of happiness to me like the day I took my mother to see her flowers in her yard.

Everyone should attend the walks when they can. They are so beneficial and seeing the smiles on EVERYONE there were so uplifting.

I may not have my mother or father any more.....but finding this site might give me a family I can be with.

God bless
Love
Doug

[Shasta]

Irwin.....I was distressed to think that you are so depressed so i felt compelled to write. You should think to yourself that your life is just beginning; the earlier part was just a skate through. Now is when you need to follow your therapy, keep up your exercise, fill your mind with happy thoughts.

My mother had ALS and the three things i learned from her were; 1. To be patient, 2. To be humble, and 3. To let everyone know how much you love them and how happy you are for everything they do for you. Do not think that life deals FAIR lives to everyone. Some people go through a childhood of sexual abuse; Some go through handicapping injuries....That doesn't mean they turn away from the happiness that life has to offer.

Tell us about your family.....About your care.....your pets....and yes, when you're angry.....tell us about your anger. Remember though.....in the long run, your life is special and you have so much to offer. Never give up on yourself.

[KayTee]

Hi, there. I have been a regular to this site for about 3 months, and this is my first time posting. I hope I do this right. I'm here because I have a dear friend/co-worker who was was diagnosed with ALS this past summer. I was afraid to ask him about ALS because he doesn't talk about it, so I came here. This site has been great because it has pointed me in the right direction for getting more information and helping me to learn about this disease, which I have also shared with others in our circle. I feel better prepared for what to expect and accept things as they come. Although there is a lot of challenge to this disease, there is also a lot to be positive about. Thank you for having this forum and letting me be here.

KayTee

[Shasta]

Fantastic...Glad you finally came out. This site has lots of access to information from care to heredity chances. AND I've never seen as positive'a group of people as this. Getting yourself educated and ready is one of the best things you can do for your co-worker. Tell him about the group as well. Hope to hear more as i read read read and if you have any questions, POST THEM.

God Bless
Doug

[MtPockets]

Welcome to the forum Kaytee, Doug, Irwin, and the many others.

I can't speak for everyone on the forum, but I can say welcome to our world and our family. I have grown to love my family here on the forum and open up and trust them with things I would never tell my natural family. I gripe, complain, fuss, just let it all hang out and they still show me unconditional love. Now where else can you find that?

The main reason is that we have a bond that others cannot understand. A common ground of fighting for our lives, the lives of friends, and loved ones. We all know life is not "FAIR", never has been never will be. It takes time to get over the steps many of us face after learning we, a family member, or friend have ALS.

1. Denial (Wasn't de-nile a river in Egypt?) :)

2. Bargaining (Now that, I can do, give me a good garage sale any day) :mrgreen:

3. Anger (How sweet the rage that rises up for naught. :twisted: For what has it accomplished?) :oops:

4. Depression / Anxiety / Grief (No one comes to my Pity Parties) :(

5. Acceptance (And now the healing of the soul and spirit can begin, and peace can be found, if you look hard enough for it)

Each of us goes through these steps at different speeds and sometime we go back and forth to them, time and again. Yet hopefully, we reach a point where we look at the truth of our situation and begin to think of what comes next?

After death then what? When you are angry it is often very hard to believe in a God who loves us and wants us to dwell with Him forever. A God who sent his son Jesus to die for our sins that we might have life eternal. A life without pain, suffering, and disease. Many believe it is just too simple. To accept Jesus as our Lord and Saviour and we can have everlasting life.
My own choice is to believe and to accept, how about you?

People have been given the free will of choice! Chosing what they believe to accept as real in his or her life. I give you the right to chose whatever you want. I still will love you and help you in any way I can to make it through this difficult time in your life. I will not try to force my beliefs on anyone else.

I am just presenting to you my own personal point of view on the subject. It in no way reflects what this forum or it's founders believe, but is strictly my own personal opinion.


If you would like to discuss this further please feel free to private message me or contact me by e-mail at grandpamarble@cableone.net

For those of you who do not know me, I 61 years old and I am the proud father of 3 boys, a daughter, and 15 grandchildren. I invite you to join my ever growing family. Feel free to kick your shoes off and share your heart with me. Anger, frustration, fear, venting, is all allowed. Just talk, you will feel better for it.

God Bless
Capt AL

[jimercat]

KayTee,

Nice of you to look into ALS for your co-worker. Hope you find the info you need to help y'all be of support to her/him!

[qualitybabe823]

I felt so alone until I stumbled onto this website, here I feel I belong, I don't have to make excuses for how I feel ........that's a gift in of itself! Thank you to all of you for sharing your thoughts, feelings, symptoms, just everything. I know that I can share feelings here that I would not want to impose on my family, they have enough to deal with. From the bottom of my heart, thank you.........:-D

[Shasta]

Fantastic Qualitybabe......there's nothing better than being able to open your heart up to caring people. Hope you check out the link about the exercise. I'm a real nut when it comes to exercise and think exercise is the fountain of youth Ponce de Leon wasn't able to find. Am still trying to find information concerning exercise for this group and as you can imagine, it's tough to find. Hope you join us there and get up on the horse with us. Remember....exercise never gets easy for anyone.

God Bless
Doug

[billyd]

Hello, I am new to this site but am encouraged that there are so many caring people out there. I like so many others have entered down a scary road due to frightening symptoms and am in the process of trying to find answers to my leg cramps and weakness. I hope for the best for myself and all of you.

[jimercat]

billy,

Hope you don't have ALS, but welcome just the same!

[Shasta]

Billy...don't get too afraid until you've been fully looked over. I became terrified when I found a lump in my pubic area only to find out from a doctor's examination that it was an ingrown hair. How embarrassed could I get? Keep up your happy thoughts and keep us informed as to how it goes and keep your chin up.

God Bless
Doug

[Maggie Miller]

Hello from yet another newbie. Have been encouraged by my social worker at my clinic to come to this site for, well let's just say, over a year. Apparently it takes me a while to heed advice that does not come out of my own head. Maggie

[Maggie Miller]

hey there Billyd - Have you tried tonic water with quinine to replace around half the water that you injest daily? It is the only way to get quinine these days, but was suggested by my nurse practioner in my ALS clini now that the tablet form is off the pharmacy shelves. Found that the diet tonic does not work as well as the regular (not sure why), but have noticed a substantial drop in leg cramps. Also found that walking daily makes the cramps lessen. Maggie

[Brenda Bowman]

Hello Everyone, I lost ny son Chad to Als,he went quickly(April2,o7) I am still in shock can't believe I won't be talking to him today. I was hoping maybe I could help someone out there. Brenda

[liz]

Better late than never, Maggie. Welcome to the forum. :-D

Liz

[Al]

Hi Brenda. Chad lived in Florida didn't he and was in his early thirties and engaged? He hasn't been forgotten here. Welcome and thanks for the offer of help.

[Shasta]

HI Maggie....Glad you could make it here. There are so many wonderful people. I'm an exercise nut and am returning a doctor's call tomorrow about exercise and ALS. I'm finding that everyone has different responses to it and i just don't want to pass anything on that may accelerate the progression. Glad you could make it here.
God Bless
Doug

[Shasta]

Brenda.....I'm certain your experiences will help with everyone. You know, sometimes it's not information people can share but rather an emotion. What's your's?
God Bless
Doug

[MtPockets]

Just wanted to welcome all the new members to the forum. I'm glad you found us and look forward to talking with you.

God Bless
Capt AL :)

[jimercat]

Hey Maggie and Brenda!

Maggie you will find plenty of support here!

Brenda, Irma (hope she doesn't mind me dropping her name) just lost a son also to ALS. I'm sure you both will have a lot to share.

Sorry y'all had to look us up...

[Gina]

Hi!I am a new member here and not sure how to operate this site yet but am so glad to be a part of.My husband has als and is in the late stages so i am feeling a little overwhelmed and hope to get some support and give some as well.Thanks for being here!

[liz]

Gina-

Keep checking in. There is an amazing group of caregivers regularly visiting this forum. Ask specific "how to" questions and you'll get specific answers. Or just vent and share your feelings - others can relate.

Liz

[freddiesnetty]

Hi and thanks for whoever created this site. It is wonderful. I am so GLAD that you are here. I am a caretaker, my husband has ALS. He fell from a stage while performing and this was in April 2003, however after many years of visiting with a billion drs, he finally got his dx in Dec. 2006. He did his last concert in Oct 2007. He truly misses his craft, He was the next Jimi Hendrix. He is very well known and can't believe this has happened to him. I will pray for each and everyone of us. Christ will give us all the strength that we need. Take care of each other!:-D
Annette

[Icanmanz]

Hi Gina! Welcome to the forum! Sorry you found us under these circumstances! Als is a terrible disease. I was shocked when my son became a Pals, and this monster was introduced to me! Feel free to ask questions! This forum consists of caring members! May God bless you and your husband.

Irma

[jimercat]

Annette,

Very sorry about your husband and sorry you had to join us!

That's just it, "It can't happen to me." But sadly it does!

look forward to any contributions and questions you may have!

Hang in there!

[Icanmanz]

Hi Brenda! My heart goes out to you! May your beautiful son rest in peace. Your son Chad and my beloved son Rudy are the best of friends in Heaven. I am so sorry I am just now replying, but I just ran into your post. This is a busy forum! I lost my son 2 months after yours. Mine passed on June 3, 2007. As a matter of fact I believe you are the first one I have bumped into on this forum that has lost a child to Als. This is the worst experience I have ever had. I have never been the same since. I joined this forum after my son passed, so I didn't get a chance to chat with your son. Feel free to ask me any type of questions, I don't mind. My son was 38 when he passed, he would have been 39 15 days later.

May God bless you and your family. Will say a prayer for your darling son!

Irma

[Gina]

Liz,thankyou for your support i cannot believe that thier are so many people out thier who are willing to take the time to welcome me and support me at this time when i sooooo need it.God bless you!And i will thank god tonight for my newfound home where i can feel comfortable and safe to talk and vent my feelings without being judged!

[Nell]

Hello Everyone,

I have been browsing here now for a couple of months...my sister was diagnosed with ALS in August, 2007...and what a roller coaster we have been on. She lives 2 hours away from me, so I do not see her on a daily basis. Each time I see her she is a little worse. In June she was getting around ok, walking on her own, etc., today she is barely getting around the house with a walker.
Well, just thought I would say Hi, and let you know why I am here nearly everyday browsing...Lots of information to digest...
You all are in my prayers

Nell

[Icanmanz]

Hi Nell! Welcome to the forum. Wish you didn't have to be here under these circumstances. All I can say is you came to the right place. Lots of good folks here. Feel free to ask any question. May God bless you and your sister.

Irma

[Shasta]

HI Gina and Nell,

You'll find some very nice and supportive people in here. Also there are links to support groups in your area. I was amazed at the turnout we had here in Indianapolis for a Walk to raise funds for ALS. Glad to have you both here.
Doug

[bala80]

Hi everyone,

I have posted a couple of times but should have posted here first. My name is Dennis and i'm 27 from Austrlalia just diagnosed with ALS. Because of my age and the sudden onset my neuros refused to believe I had ALS at first, including 2 negative EMG's, so my parents and I have been through hell being told this was not possible and then turning and diagnosing me as I have worsened. All my docs and neuros thought I had anxiety disorder - and thus so did my parents - whilst I knew all along I was in trouble with no-one to hear me. In the space of 3 months i've gone from random twitches to constant twitches, muscle pain and considerable atrophy. I admire you all on this forum and PALS everywhere, I cannot think of a disease I would much rather have than this - especially when it moves quickly like this. I wish everyone the best in their battle with this total injustice of a disease. Please forgive me for the angry undertone - i'm really trying to get on top of this emotion right now.... i'ts really hard i can tell you.

[Shasta]

Bala.....that's why we're here. You can get mad.....you can do it undertone or you can do it right out front but know you're doing it to others that have or are going through it. Everyone here .... is here for you. :)
Doug

[bala80]

Thanks Doug, it means a lot to have a place to go to like this. It just sucks that we have all been left out in the cold like this . . . . .