New? Introduce Yourself - Say Hello

[fla-cherie]

Hi everyone -- through the fantastic online ALS support group I'm privileged to be part of, I was directed to alsforums, which I attribute to the Lord blessing me, which He does every day. I'm going on 60 in a few months (Lord willin'), dx w/ ALS at UAB, Birmingham, AL in Feb. '06--w/ lower limb and bulbar onset. I'm so grateful for all the information being shared by the members, and especially thank the Forum for Scam Watch! This was truly an answer to prayer, because I'm sort of being "pressured" by very caring non-ALS friends to jump onto the Edney bandwagon, etc. which I never had peace about! Thanks for the boldness to name names, so we know which grievous wolves are out there lurking around for us little bleating sheep! The first time I visited the site, I felt an umbrella of protection open up over my head! and a special thank you to GrampAl for his volunteer work on our behalf and such kindness in his comments. God's blessings to all today. fla-cherie

[xsparklingwinex]

Hello. My name is Holly and I am new. I am 24 years old and was diagnosed with ALS 2 years ago. I don't know anyone here. I was hoping to make some new online friends.

[Al]

Hi Holly. It's too bad that you have to be here with us but you will have many friends here to share with before very long. Welcome. AL.

[Al]

Welcome to fla-cherie as well. I've been to Pensacola a few times. A great place. As long as the hurricanes stay away. Thank you for your kind words. We all do what we can to make life easier for the members. AL.

[xsparklingwinex]

Thank you so much AL. It's been really nice meeting everyone so far.

[LittleHeart]

Hello sparklin im new to the board also but have met some great people.
Im glad to meet you but sorry it is under these circumstances.
Ive found alot of helpful information here and am sure you will too
LittleHeart

[xsparklingwinex]

Hi Little heart. It was kind of you to reply. Your right, everyone seems very nice here.

[MtPockets]

:-D Glad you found this site. Welcome to one of the worlds worst clubs to be a member of, but at the same time I hope you can somehow enjoy your time here, make friends, and find answers to some of your questions. Welcome and the best to all of you. I'm fairly new here myself. Just DX in May this year. May God Bless.
Big AL

[Pearl]

I like that last post "welcome to one of the worst clubs to be a member of " -
made me laugh, when the last couple of weeks haven't been very funny.

I have come to this site because a friend's husband has recently been diagnoised with ALS. It has been devastating for them and very, very sad for those who love them. I guess I'm looking for guidance in how to help - also for information. It is taking my friends a lot of time to come to grips with the diagnosis (as I imagine, it would for anyone) - I want to be of help, but I also don't want to "butt in". I know they need time.

[Barbie4]

Hi Pearl:

Welcome to the "club". I definately wish I wasn't a member of. My best friend was dx in March 2006. Only 41 years old and three young kids. I have only been a part of this "club" for six months, but here is my advice to you.
Give your friends their space, but always let them know you are near and care. Your love and friendship is what will help them through this. Don't give them advice, listen when they need you too, and let them lead the way. Start fundraising for your local ALS walkathons and raise awareness for this horrible disease. Don't walk away, when the going gets tough.
This is a hard thing to deal with for everyone. Take care of yourself and stay strong.
This is what I tell myself every day. This forum is a wonderful place to vent, ask questions and learn more about the disease. It amazes me everyday that on this site, the people whohave ALS or are Caring for someone with ALS, have the strength and love to help others everyday.

All of us are here for you.

Barbie :-|

[Pearl]

Thanks Barbie, you have good advice. I'm a little obsessive compulsive, so it is difficult just to sit back and let them take the lead but from what I'm reading that is what needs to be done. It's just so temping to want to step in when all they can do is sit and cry right now - but , I'm thinking that that is probably what they need to be doing right now - they will manage in their own time. Just so very hard to watch. :(

[Paula]

Although I do not check in regularly, it is so comforting to know that there is a support group available to me in my own home at any hour of the day.
Thanks so much
Paula from PEI

[kwachtler]

Hi everyone,

I am new to the ALS forum but not new to the ALS disease. My husband has had ALS for 6 1/2 years now. He is in the later stages of the disease but his progression seems to be relatively slow in nature. I am here to help anyone with questions about the progression of the disease or what we have tried and found worked best for us. I still have my husband living at home with me and I relish every day with him.


God bless,
Karen in Texas (Dallas area)

[Al]

Hi Karen and thanks for joining. We need some old timers here to kind of let some of us relatively short timers know that there is hope. 6 1/2 years is great. Don't take that the wrong way but with so many of us passing before 5 years it is almost a joy to hear of someone doing well or as well as can be expected with this disease after more than 6 years. Looking forward to your input. AL.

[Blackbird_29]

I'm new to this site and come from way down under (New Zealand).
I have PBP and lined up for a PEG. Apart from that I am fine. We have just returned from China where I walked on the Great wall and Florida where I became a child at the marvellous theme parks. I'm living it up while I can!
'One day at a time sweet Jesus, thats all I'm asking of you'
love to all,
Merle:-D

[Al]

Welcome Merle. You've got the right attitude and a bucket of cash I suspect. Both help with this disease. The best advice we give is take each day as it comes. Feel free to give us your perspective from down under. We're all different with this disease but basically the same. AL.

[Danny]

Hi all,
My name is Danny and I was my mum Lynda’s carer until she moved on to a better place on the 13th of July 2006, she taught me many things throughout my life, but while she was battling with MND my mum taught me what true strength and courage really are. I set up a web site for my mum to tell her story and a place where people who have been touched by this horrible disease can come to find useful help and advice, I am in the process of updating the site at the moment so if you look at it and have any constructive criticism then please don’t hesitate to get in touch.
About two years ago my mum first started to notice a problem with her speech, a slight lisp which progress to a major problem with speech. She went to her Doctor at the time and was told ‘you are a hypochondriac’ and told to go away. My mum knew there was something wrong and started searching the net for answers, my mum diagnosed herself with ALS. While visiting a physio therapist about a problem with her foot, the physio therapist agreed that there was definitely some very serious wrong. After a series of tests, some of which were horrendous, she was officially diagnosed with MND.
I wish I had found this forum a year ago as there were so many questions that went unanswered.
Danny

[Pearl]

Hi Danny. Welcome to the forum. So sorry about your dear mother.

I just read what someone else wrote about ALS and how it can stand for "About Loving Someone". I like that.

[Al]

Hi Danny. So sorry about your mum. I hope you can find some solace here and possibly help with advice and support for the others that are affected by this disease. I know it can be hard to lose someone but the rest of us can still possibly have a better day with your help and insight. AL.

[anne]

Hi Danny....sorry to hear about your loss. I am interested in visiting your web site. Can you pass along the web site address. My mom was diagnosed with MND in June 2006. Her speech is very bad and has some difficulty swollowing and with the saliva build up. The only positive thing is that her mobility is excellent and her emg back in June showed no muscle weakness. She has had gradual symptoms for two years and finally her speech started to go in April of this year. I am really scared as to journay that we will be taking. Once again I am really sorry that your mom has passed, but I am certain she is in a better place. I always tell myself that this life we live is the Hell and there must be better when we pass. Life always faces us with so many challanges.
Danny....only times heals the pain that your are feeling....God Bless. Anne

[hope]

Welcome Danny,

I am sorry for your loss of your mum. My husband is suffering with this horrible illness and is very ill right now. I am taking great care of him. There is not a minute goes by that my heart is not breaking. I am glad you found this site here, everyone here is so kind and caring. We all help each other get through another day.

Sandy.

[gapeach]

My husband is in the process of being diagnosed. Local drs think it is MND. We go to Emory Sept 21. Have been waiting 4 1/2 weeks already. I have been warned that we still might not know anything for sure for a while. The waiting is tough. My husband has been having the bulbar symptoms. Slurred speech, sometimes trouble getting a word out, swallowing difficulties, breathing problems, excessive saliva, stiff calf muscles, all over body muscle aches, uncontrolled laughter, coughing and excessive clearing of throat and some jaw problems. It really is like a nightmare. Is this really happening? God has given me strength each day, but it still seems unreal. We live across the line about 7 miles in Alabama, but are going to Emory in Atlanta to see the neurologists.
gapeach

[Al]

Hi peach. Welcome to the site. Waiting is probably one of the hardest things to do. There is a site in Georgia called the ALS Patient initiative that will send you information and resources in your area of the states. The site is at www.als-link.org (http://www.als-link.org). Feel free to ask any questions here. We're a pretty informal group. Take care. AL.

[gapeach]

I know how to reply but do not know how to start a new thread. Can you tell me how to do that?We went to visit our local neurologist a couple of weeks because my husband was having pain in his muscles to get something to help him and the neurologist put him on temporary disability. We were quite shocked and told him that he has MND. I thought he had some type of MND but thought he would at least be working until we went to Emory the 21st or at least for a while after until other symptoms. So far we don't see any limb involvement except for stiffness in calf muscles but he is so fatigued. He has the bulbar symptoms mostly with emotional lability right now. Is that normal to put them on temporary disability already?
gapeach

[Al]

Hi gapeach. When you first click on the large heading or link General discussion and the page loads with the topics listed there is a box in the upper left corner New Thread. Click on it and type in your topic and message and submit and you're in business.
As far as the disability goes it is usually up to the Dr's discretion but he usually consults with the family to see if they want that. Maybe you gave him the idea and didn't realise it. If it concerns you I'd call him to talk about it. AL.

[gapeach]

The neurologist said he is not working is he? I said yes, 50 hours a week and he said no he doesn't need to work at all but go home and rest. We were shocked and didn't really ask many questions after that except I asked him how could he put him on disability without knowing for sure if he had MND and he said i know he has MND. Bring the papers in I will sign them. We weren't prepared for that and just were shocked. We asked alot of questions about the MND and were prepared for it but that just knocked us out of the water.
gapeach

[sufernan]

My husband passed away on December 2005. I want to offer my support and share my experience with people that are going through the same process.
ALS is a horrible deseas, it is always difficut to see a loved one suffer. Daniel was only 44 years old. ALS left our 15 month old baby without a father.
Share the tears, it helps!

[MtPockets]

I am so sorry to hear of what you and your husband are going through. I can identify with some of it to a point.

18 years ago I was a workaholic in the best job I had ever had in my life loving every minute of it and not prepared for what was to come. I had very little savings, then it happened. I had a plane accident in Alaska and boom overnight I was on disability. My income was not enough to live off of and I had to go to court to get workers compensation since it was an on the job injury. It took over a year before my case was heard. Meanwhile, I used all my saving, and made the best of a bad situation. Overnight my whole life changed, I had to return to the Mississippi coast to see a neurosurgeon and receive treatment, and here I am today.

I loved ALaska, I loved my job, and I felt I had disappointed my family, wife, and 4 kids, because now I could not provide for them as before. I became suicidal, and had to go for help to adjust my outlook on life. I thought life was not worth living.

Now 18 years later I have adjusted, become a Christian, and love every minute of life and BAM I get DX with ALS. It's ok though because I am happy with my life and what I have been able to do even with the disability. I now have 4 children, one is a doctor, one is about to graduate as a Lawyer, one is a social worker with the Katrina victims, and one is a Deputy Sheriff. I also have 14 wonderful grandchildren.

I'm saying all this to let you know your husband needs moral support at a time like this. He needs to know you love him and are willing to do anything to help him during this horrible time or he might just give up. Emotional encouragement is very important for him at this point. Try to let others know that he need encouragement that this is something he is not going to go through alone. He probably is not telling you what he is thinking, how he might be giving up, or how he feels there is no hope.

I know you have a lot of "WHY" questions right now, but stop and think about what must be going through your husbands mind. The "WHY" is not as important as forming a plan of what are we going to do now. I don't know you or your husband, but I know how some men react in a situation like this, they give up, and now is not the time to give up. Now is the time to focus on living every day, every moment he has left, enjoying life and spending time with those that he loves.

I don't mean to sound harsh or upset you, I'm only concerned that your family focus on the days ahead in a positive way if at all possible. I know it seems impossible, I've been there, I was DX with ALS May 11, 2006 after 2 years of symptoms. We are all wishing and praying for the best for you and your husband in this difficult situation.

Please invite your husband to come to the forum and let us help him. There are many of us here who who have all stages of this disease, and I know he must have a million questions about what is going to happen to him. We can help answer those questions and help encourage him if he will give us the chance.

God Bless,
Big AL:cry:

[Pearl]

Sufernan, can you share more of your experience? I visit this site because I am a close friend of a couple (huband w/ALS) - I'm trying to help them learn and gather information as they cope with the overwhelming changes in thier lives.

I'm just wondering if you have any advice for the wife - or insight into the progression. Is there anything you wish you would have known or done differently?

thanks.

[sufernan]

Dear Pearl,
I have to think about what kind of advice to give someone who is going through what Daniel and I went through. Dealing with ALS is difficult. We cried a lot, we talked a lot, and even in the worst of times, we laughed a lot. Only God knows when you will die, no doctor can tell you. But more important, nothing and nobody can control how you will spend the last days/months/years of your live - you decide that. Daniel and I decided we wanted to be with our child and enjoy him together. We had two years full of joy.
My advice is find support. Be a loving and caring friend. Your friend needs unconditional love and she needs to be around people that will support her and her husband, physically and emotionally.
My heart is with you and your friend and every family who is dealing with ALS.

[debbieo'mahoney]

Hello everyone,
This is all very new to me so please bear with me.
Thank you.
Lark
Hello I am new too help!

[MtPockets]

I am sorry you have to be here just like the rest of us, but you will find more support, compassion, encouragement, and answers to your questions here at this forum.

Feel free to ask any questions you have concerns about and sometimes you can use the search function above to see where other people have discuss things you are wondering about.

For me the thing that has helped me the most, besides the support here, has been trying to maintain a positive outlook on life. It's hard to do that with any disease I guess, but with ALS it's even harder. I accept the fact that I am dying, which it was hard to get past the river of de-nile as we like to call it, and I try to focus all my energies on living each and every day to the fullest. Loving my family, wife, 4 children, and 14 grandchildren. That sounds like a full time job in itself.

I also try to have ALS free days for my care giver, my wife, where she can go out with some of her friends and do things she likes to do without worrying about me. I know she is under tremendous strain and worry, and needs to take a break from it all ever now and then. As I get worse and need more care I will bring in help to care for me so she can get her needed rest and time away from me. No need in both of us dying. For after all when I am gone she still has a life to live and needs to be prepared emotionally as best as possible to do just that, live.

Hope some of this helps. If you have any questions just jump into any of the forums and ask.

God Bless
Big AL
:)

[debbieo'mahoney]

Thanks for your reply, there are lots of things I would like to ask you but I really wouldn't want to upset you! Do you have the uncontrolled emotional breakdowns i.e. crying and laughing - this is what my dad is going through now!! He keeps saying he doesn't feel sorry for himself (although he has every right) but he can't control the crying when it happens but he doesn't obviously like being like that in front of his grandchildren etc.! Are you still mobile? I am from Essex (UK)!

[debbieo'mahoney]

My dad was diagnosed just over two years ago and then told two weeks later it was a mistake! But as he was still losing his voice and moving slower they continued test after test until the following six months later they re-confirmed it was MSN but they couldn't say whether it was fast or slow! I am from London (UK). How are you coping?

[Sandra M]

My name is Sandra,i'm new in this web.
My husband is 45 and was diagnoss with ALS on 2002,he is in a wheel chair,can't talk very good anymore,but he is a very strong man,very positive,his only problem is me,because i'm not strong like him,and sometimes i just think the i'm not gone make with out him,especially for our 4 year old daugther,i feel depressed,helpless,i just don't know what to do.I cried every day when i'm alone,i'm sorry i just need to talk to somebody.:cry:

[Al]

Hi Sandra. Can I ask where you are from. Just the state or province is ok if you don't want to get too personal. Is there a support group for ALS caregivers in your area? They can help you cope with what you are going through. It is very hard on the caregivers and they need looking after too. We'll try to help you out if we can. Feel free to ask as many questions as you need to.
Debbie. I don't think there is too much that you can ask here that will upset most of us here. Ask what you need to know. If we don't know, someone will know where the answer is. Take care. AL.

[angelbaby'smom]

Hi Sandra,
I am brand new too...you are not alone. My mom was just dx with als and I am also looking for emotional support...people to talk and share with. Feel free to leave a message. My only draw back is it's a brand new thing for me and I don't have the info the others can add. I would just be a good listener and I understand how you feel. Good Luck and God Bless-Laura

[sdrn]

i have a friend with als and i am looking for ways to help modify her home to make it easier to move about. i am at a loss as far as available resources. i have contacted the local als social worker here in richmond ,va as a start.any tips/suggestions would be greatly appreciated! i am so glad i found this site.

sdrn

[Al]

Hi sdrn. Sorry about your friend but I'm glad she has a friend like you to help her. If you use the search feature above and type in bathroom layout/design help there are a couple of tips that might get you started. Take care. AL.

[patricia1]

I started the same way in 1999 with slurred speech and it stayed that way for 5 years and not one md would tell me what I had until it when to my arms in my 6th year then one md committed and very bluntly YOU HAVE ALS my husband and I cried now I am in my 7th year and my arms are worse I work up till 2005 and I still am very active , emg this year showed weakness in my arms but all other test are still neg. It is a process of elimiation.they still are not sure what variance of als I have . Hang in there Keep active and never never give in never. PAT

[patricia1]

Tried To Focus On Living And Not Als Dont Let It Take Hole Of You And Ruin The Life You Have Now Worrying About Getting The Disease Will Not Let You Get It Or Not. I Know Its Terrible To Lose A Love One But Please Be Happy To Be Alive .keep Busy And Keep God In Your Life Pat

[patricia1]

Hello. My name is Holly and I am new. I am 24 years old and was diagnosed with ALS 2 years ago. I don't know anyone here. I was hoping to make some new online friends.
HI HOLLY I AM PAT SORRY YOU HAVE THIS DISEASE AT YOUR AGE DONT GIVE UP THERES ALWAY HOPE KEEP PRAYING I HAVE IT 7YEARS AND I AM STILL ACTIVE. HANG IN THERE PAT

[patricia1]

Hi Karen and thanks for joining. We need some old timers here to kind of let some of us relatively short timers know that there is hope. 6 1/2 years is great. Don't take that the wrong way but with so many of us passing before 5 years it is almost a joy to hear of someone doing well or as well as can be expected with this disease after more than 6 years. Looking forward to your input. AL.
I HAVE ALS SINCE JULY 99 AND I AM STILL HERE. SO DONT GIVE UP PAT

[paula B]

Hi My name is Paula.
In june of 05 i started new career,,otr truck driver. Shortly after starting to drive i noticed diff odd things going on with me,,alot of weakness in hands then legs. I was told by other drivers it takes about a yr to get adjusted to driving so i didnt think much of it. April 1 of 06 was the last time i drove. April 4 went to er,,was taken off work. Then had blood tests done,2 mri. April 13 was told i had als. Also had nerve tests emg i think its called.
I am 42 yrs old. I live in Wisconsin
This disease has been going pretty rapid for me,,i am waiting for electric wheelchair to come in. I have posted on here b4,,never introduced self tho.
Wanted to say hi and also im so so happy to find you all.

Paula

[Al]

Thanks for the intro Paula. Sorry about your luck having to be here but as you say, it's a good place to find. AL.

[sdrn]

thank you AL-sdrn

[Elo]

Hi all, thanks for all the help and support you have given me. Elo

[Teej]

I am very new to all of this technological support...but incredibly relieve to find it. Can anyone tell me if there is a chat room designated where we can go and talk live to people? My husband was diagnosed 10 months ago, and we are still reeling. We have four amazing daughters aged 10-19, and we have been married for 26 years. We were 17 and 19 when we married, and have essentially grown up together. The shock of this hits us every day, but we have been blessed with an amazing support system. I am just looking for others in my situation to chat with, and gather ideas from. I am so happy to have found this site...Blessings Teej

[David]

Hi Teej,

As a few of the people say, sorry for the reasons you're here, but nice to have you. A big warm welcome!

There is no chat program but feel free to post messages and people are usually able to respond the same day.

Have a nice evening.

[reginaswilling]

My wife regina has been diagnosed with ALS about 1 year now, she can not speak, has a hard time swallowing according to swallow study, and has a feeding tube inserted. She has lost about 35 lbs, since she has feedinf tube she takes 1/1/4 cans of fibersource 4 times daily, she is easily confused, losing balance and she is 49 yo. I am giving her vitanin E squeezing from gel capsule to formula aprox 1000 mgs. is there anything else i can ue in her formula to detoxify. Please help as we are not financially secure as I am disabled seizure person and she is hopefully going to get ssi benefits soon...any and all ideas would be great, we try and keep PMA positive metal attitude, so please help with advise or if anyone knows of any free clinics for detox or vitamins for feeding through a feeding tube....thank you....russell

[Al]

http://client1.sigmachat.com/sc.pl?id=144320

Hi teej. Here is an als chat room. I have been there a couple of times and it has quite a few people from the US and a few from England and Australia last time I was there. There is also one for ladies only and Jeannie that posts here has something to do with it. You could send her a private message and get the room from her. Feel free to ask any questions here. AL.

[waiters848]

Hi,

My friend Di has just been diagnosed with ALS, and told that she only has 6 months (give or take) to live. Her birthday is 10/12. She will be 56. She has been retired for about 9 or 10 months. She thought for a # of yrs., that she had something else(I'm so upset I can't think what the disease is called). Anyway, last week, her daughter finally took her to our really big hospital about 30 miles from here. I mean, her lung capacity was 39%, and they were sending her home??? Good thing she took her, because, that is where they diagnosed her. I even think that hospice is going to be called in.

Her daughter called me to tell me. I am very grateful for that. I told her daughter I would like to either see or talk to Di (of course maybe she can't talk). Anyway, I haven't heard anything, but, that is ok. I am just going to start sending her a card a week so she knows I am thinking about her, and that I care. Maybe I will still hear from her. Even if I could just go over and maybe read to her or something.

Anyway, I happened on your site, because I googled "gifts to bring/send." Would you please tell me the appropriate thing to send/bring? I don't know which.

God bless all of you. I will look for your emails.

I can't believe this could be happening. This is sooo difficult (I don't mean to sound selfish). I know that she is the one suffering.

Thank you all,

Barb

[Al]

Hi Barb. Sorry about your friend Di. It is very difficult trying to be a friend of someone with this disease. Not knowing what to say or whether to hug them or just a hand on theirs is an individual thing. Trust your instincts. Do a search up above and type in What to give a Pals for a birthday gift or just Birthday and about half way down the page is the post about gifts. There are some ideas there that may help you.

[hope]

Barb,

I think the most wonerful gift you could give your friend is the gift of friendship. You cannot put a price tag on a gift such as this one and it is something you do not have to return to a store. It is absolutely priceless to be a friend. You sound like you are a wonderful friend to her and that is what she needs more than anything in this world. Support, love and someone who shows all the time they truly care. We do not have to be with someone all the time for them to know we care and love them if they already know this in their hearts. The comfort of words, a smile, a hug or just holding onto to hope for a loved one means more than you will ever know. Your friend is blessed to have a kind and care friend. Give the gift of always letting them know you love them.

sandy.

[jann]

I am new to this site and am still tring to figure it out. Wish it had instructions...lol I was a CALS..my mother was diagnosed in 1998. She has passed, but i still feel the need to hang around these sites and still i feel the pain that you all have. Please know yous are all in my prayers. Hope to chat with yous...jann

[Al]

Hi Jann. Welcome. I am sorry about your mother. If you go back to the top of the topic page
New Introduce Yourself there are topics called sticky's. These are some instructions how to do some things on the forum. There are other ones spread out around the other topics. Hope this helps. AL.

[james snook]

Who ever stated - “Stop the World, I Want to Get Off”, is how I feel now when I found
out about my 37 year old son - Rod when he told me he had ALS. I’m am a life long
“natural rescuer” type person, now at the age of 65 who has help others all my life.
And I’m at a total lost of what I can do to help my Son, now. I feel totally powerless
and lost in a world of sadness. Jim

[Al]

Hi Jim. I know it is a devastating thing to hear of an ALS diagnosis. The good thing, if there is any good about this is that younger people generally progress more slowly than us older guys. Does he have bulbar or limb onset? The best thing you can do for him is talk to him when he wants to talk, sit with him when he just wants to sit and cry when you both need to. Loving and supportive family and friends go a long way in making things more bearable. Feel free to ask any questions you would like information on. AL.

[trustinggod]

So happy to have found someplace to ask questions and find some help.
I have been at my friends side since the very first signs of ALS about 4 years ago.
In the beginning I was there to listen and cry with her. As she became weaker I became stronger and was able to do for her what she could not. For the past 14 months I have been at her side doing everything. Her husband still goes to work everyday so I stay with her until he returns.
I am looking forward to having a place to share with people who will really understand what ALS does to a persons life.
Thanks for being there.

[Al]

Welcome Trust. I am sure you will be a help to the people here. There are a lot of new people with a new diagnosis. They have questions and we need people that are going through it as a caregiver to help with some of the answers. Sorry about your friend but glad you found us. AL.

[rkhny2004]

My nephew is 16 years old and has developed problems swallowing. He has had an MRI and other tests which showed that he has a problem with the esophogus. The doctors are all whispering ALS despite being otheriwse healthy. the family is very nervous and will see a neurologist next week. I thought this happened in the 40-70 year old age group. He has no other signs that I know of like muscle weakness, etc.

PLease help with some direction. They live in Salisbury, NC

[trustinggod]

Thank you Al for your reply. I am not too sure where to post my questions. I've never participated in anything like this before. I've read everything I could find on ALS to try to have a better understanding of what my friend Linda has and is going through with her continuing loss of function. She is completely dependant. She can only move her fingers and her head side to side. She still wants her makeup and hair done every day even though most days she does not go out. I've learned how to feed her through her feeding tube, use the suction machine, put on her bi-pap mask and adjust her body in bed to make her comfortable. She has almost completely lost the ability to speak.

It has been a long four years that I have been with her from the first symptoms through the many doctor visits and finally the awful news that she has ALS. Hospice started coming last week and that is a big help for me. The health aid now gives her a shower, brushes her teeth and gets her dressed three times a week. What a relief for me but she seems to feel not too comfortable with the changes.

Thanks for listening.
Jeanne

[Al]

Hi rkhny 2004. It is not unheard of to have someone in their teens to have ALS but it is probably 1 in a million odds. It is more prevalent in the older age groups but not unheard of in someone so young. Try not to think the worst until he is seen by the Neurologist. If the Neuro says it might be ALS get a second opinion by a Clinic specializing in ALS.

[Al]

Posting here is just fine. Linda is lucky to have someone like you. Too many friends abandon us when the going gets tough. It takes a special kind of person to be a caregiver to someone with ALS. Obviously you are a special person. God bless you and may he help you in your caring for Linda. AL.

[Earth Mama]

Hi everyone,

So nice to find this site. I will need the support in the future.

I seem to have bulbar onset sporadic ALS and further symptoms beyond ALS that await further testing next month.

I am a young woman with a young family. I am the care-giver-type in my family so I'm hoping to stay active for as long as possible.

Weird to just have no later anymore. I'm trying to see as many friends and family as I can while I can still be understood.

In hind sight, what would you all recommend that I do now, while I am able?

[janf]

Hi Earth Mama, I'm sorry you are here but, glad to give you some TLC. I've been diag. ALS 3x since April 06, went to Atl. Ga last week. Talked with ALS nurse, She was great and so supportive kind and caring. Dr Hopkins said I had a single ray of hope thats its not ALS. But there is no other explanation for the symptons sooooooo I'll go back Nov 10 To ALS clinic and see Dr. Glass Spec. Oh brother go go go go back and back. :neutral: Earth mama, go enjoy life love the people around you.:wink: :) Live today for today don't worry about tomorrow. Ask the heavenly father to give you peace, you will notice many of us have that peace. I will pray for you now as I type this. Be kind to yourself and Don't be afraid he will carry you through. Don't be afraid to ask Questions. We are here. You may send me a private message if you like. God Bless Janf

[Al]

Hi Earth Mama. Has anyone suggested banking your own voice to use on a Dynavox or other speech device when you lose your voice? Welcome and feel free to ask what you need to know. If you use the search feature at the top of the page you can type in key words and get information on topics we've covered before. Take care. AL.

[janf]

Hi David and Everyone, thanks to all of you and everything you do to make this place feel like our home. JanF

[bobshope]

Hello,

I'm very happy to have found this forum. My father-in-law was diagnosed with ALS in the Spring/Summer of 2005; he is deteriorating rapidly. I am not his primary caregiver but help out my mother-in-law daily. I have been finding it harder to cope with what is happening to him; it is nice to read about others that are in similiar situations and to see what they have been trying.

It is going to take me a bit to find my way around the site, but from what I have read I think it will be a great tool for me to use.

Thank you for having a forum and making it so welcoming.

[Al]

Hi Dawn. Welcome to the site. I suppose that is a picture of your little guy with your bio. Sorry you have to be here but glad you found us. Feel free to ask anything you need to know or just tell us how you are doing. We do allow rants here when we are having a bad day. Take care. AL.

[MtPockets]

Welcome to the forum Dawn, glad you found it. I've only been here a short while myself, but it has helped me beyond belief. Wonderful friendly bunch of people here from all over the place. If you need a shoulder to cry on , there are plenty here, or if you need information just jump right in.

I'm sorry about your father-in-law. You might want to consider printing out some things from here for him to read so he can see he is not alone in this battle.

God Bless
Capt. AL

[Maurie]

Hi everyone - my Mom (69) was diagnosed with bulbar ALS in May of this year

[Al]

Hi Maurie. Welcome but sorry you have to be here. If you have any questions feel free to ask. AL.

[hboyajian]

Hello, My father was diagnosed with ASL just 2 weeks ago. It is helpful to have the diagnosis to begin to fathom what he and our family may soon be experiencing. At this time, he cannot swalow solid food, only that which is finely blenderized.
His speech is still very good, so he can communicate. He cannot walk easily and has a rolling walker to get around the house. He has extreme kyphosis of the spine and cannot hold his head up, which causes stress and pain in his neck. He was prescribed a headmaster collar which is hard for him to wear because he has no padding left on his chest and it presses on the bones there. We are investigating other braces for his back and neck. Is this a common symptom of ALS? If so, what has been other people's experience with how to effectively support the head? Thanks for any help you can give.

[liz]

:shock: I just got diagnosed two weeks ago. Am feeling overwhelmed - what to do about my job, my kids, my husband, everything. Can't think about much else, not sleeping well then fatigued all day. Having a hard time getting through the days.