Hi everyone

[gecc4]

I just discovered this site and found it pretty interesting. I have just been diagnosed with als, April 5, 2006 after having the second emg. I never even heard of als until I started having all kinds of symtoms and was tested for everything under the sun. My neurologist said he was trying to rule out als or possibly pls. I immediately started searching the internet to find out what it was, and was terrified of the possible diagnosis. Eight moths later, I had the second emg and was told I have als. I was floored. I felt like I was in a boat in the middle of the ocean without a paddle. I am now going to an als clinic and found there is a lot of support for people with als. I am probably dealing with this much better than my spouse, which took it very hard. I look forward to hearing from you. Thanks

[Mike27]

Hi and welcome to the forum...
The forum is kind of a conundrum; too bad that there is a need, but thank goodness for it being here!

I'm sorry to hear of your dx. It is like a kick in the stomach, just takes your breath away!
We're here for you if you need advice or just to sound off.

Good luck!

[hope]

Welcome to the site. I am sorry you have ALS. My husband was diagnosed in September and I know how you both feel. We will admit that we are still in shock and disbelief. It is truly heartbreaking. Everyone here is very kind and very supportive. My husband and I felt very alone also and we found the site and it makes you feel that you are not alone. Some days we do not know how to feel, emotions change all the time. Please know that we all care and we are here for each other. My husband has posted a couple of times, he is not sure what to say because he is still trying to come to grips with this. I try to read the posts to learn how others cope and when we can we try to support others. They are all kind.

Sandy.

[Barbie4]

gecc4, sorry you are here.
THis site has been a haven for me since my friend was diagnosed in March.

Sandy is a kind a wonderful person who seems to know the right things to say in every post she writes.

I hope you find comfort and friendship here as i have.

Sandy, thanks for your strength and comfort. I hope you know what you give to others. A big hug to you and your husband.

xo Barbie xo

[ladave]

As everyone else has said, and it is the standard line, glad you found us but sorry for why you're here. This is a good support community, so let fly with any questions or opinions, the rest of us sure do:)

[hope]

Barbie,

Thank you for your words of kindness. It is hard to describe sometimes how one truly feels. My husband always says that he gets his strength from me because I myself have been battling a very serious illness for the past few years and he says I have shown great courage and strength to keep going. Every day I read the posts here and I learn so much on ways to cope. I am grateful that I have met people like yourself and others who are very kind and caring. It is frightening to be in something you do not understand. Every morning I make coffee for my husband and I say to him okay honey today we are not going to think of ALS, we are going to think of what we can do today to bring a smile to our faces, and a giggle in our hearts. Yes even though we visit the site we try hard to focus on what we can do today. There is not one day that goes by that we do not cry, but we do laugh also. In our struggle we have found very little support in our community which is sad but we are thankful for this place.

Sandy.

[gecc4]

Thanks all for your kind words of support. I already feel like I have some new friends. Today I'm feeling a bit down because my legs just don't seem to want to cooperate. I'm afraid it won't be long till I have get a wheel chair. I just can't get used to idea of being bound to a wheelchair. :(

So long for now
Gordie

[hope]

Gordie I hope what I am about to say will help you feel a little bit better. As I watch my husband slowly loose the use of his hands I feel so frightened. My heart breaks everytime I see him struggle to do things. I help him dress, buttons,zippers and opening things, holding things have become a problem for him. I lovingly help him with all these things. We try not to focus on it to much, we just do what has to be done and keep going. I understand how you feel, it hurts. Try not to focus on having to use a wheel chair and try not to look at the wheel chair as a bad thing. The way we are going to try to look at things is that my husband just has to use a different way to do things. Live life, even though there are hurdles there, just hang in there and look at the glass half full instead of half empty as they say. I know this is hard to do but you will learn to do this. I never thought a few months ago that I could bear seeing my husband struggle like this but even though it is painful I take care of him and we have fun, we learn to laugh at some of the situations we get into. I stumbled one day and he said oh dear it is contagious, I looked at him and cried then I laughed, we held each other and moved on. Gordie, in life we are all dealt something, I have an illness that has tore at my heart and soul for a long time and have learned to face it every day with the attitude that okay today I am here and I will live the best I can, I will love the best I can and I will help others the bes I can. I am disabled but I am alive and I have love in my heart for my husband and that is what keeps me going. Hang in there, in time you will see that there will be days you feel awful but there will be days that are wonderful with lots of sunshine.

Sandy.

[wewillbeatthis]

Gordie,

Finding this site is a God Send... I can tell you that before I found this site I felt lost in a very big world. I am so sorry that you are dealing with this disease. I believe that this site will make this whole situation easier to deal with. Each and everyone one of us will be with you every step of the way.

Hope your posts always bring tears to my eyes but a smile to my face. You are so correct when you state that life brings us all something. Life has not been easy these past couple of years. Dad going for tests for a few years and then finding out almost a year ago that he has ALS. Mom having an auto ammunie disease for 25 years and finding out last year as well after a bad flare up that landed her in the hospital that she has a very mild case of Lupus. This is all very hard but I am handeling it the best I can. Mom is doing great now on medication. Dad is doing good but not great. He has good days and bad days like everyone else. I find that I watch him like a hawk and this is getting to him I can tell. So with everything else comes adjustment. I think that one thing that does make your situation so interesting to read is the fact that the two of you are together and in love dealing with serious issues. This in iteself is hard but to do it and be in love is wonderful. My parents are divorced. My dad lives with me and my soon to be husband. Mom lives with my brother. However, my brother will be moving out within the year cause he is just about done with college. Please keep up the good posts. Once again thank you for being you :-)

I do believe that we will all be celebrating a cure or at least a way to hault this disease soon enough. This is my one and only wish in this world.

[mimi]

Hi Gordie,

I am so sorry about your dx. I am still going through the process of elimination, but my neurologist was telling me last week that he is still leaning toward als but will continue to do more testing to rule it out. I know how you feel. When the doctor started discussing this with me It was like the wind was knocked out of my sails, but when I came to this site and had all these wonderful supportive people respond to me it was like a weight lifted.

I don't post a lot but I do read every day and get such positive feelings and education from this site that I really would be lost with out all the input everyone gives here and that I can't thank them enough. Thank you all.

Hang in there Gordie, my thoughts and prayers are with you,
Mimi

[joejoe]

Hi Gordie, how far are you from Reading P.A.? I have never heard of Gap.

[gecc4]

Gap, PA. is about 35 minutes south of Reading, PA. Gap is on Rt. 30 between Lancaster and Exton, pretty much in the heart of Amish country. If you can still get away, it is a good place to visit.

[Syndi]

Im new to this site too. My man of two years who I intend on marrying just got diagnosed with ALs 3 weeks ago. So many emotions so many questions. His symptons came on quick. Muscle twitching constantly in arms started end of Feb. His left side of his body is really weak. He is already in a wheel chair. Perfectly healthy 3 months ago. :cry: He has hard time breathing. When they diagnosed him on his paper work they have sever rapid progressive. The doctor basically gave him advice to take care of his personal papers, family etc. To call hospice and his door was always open but there was no treatment. Ive been reading on this site and I will continue. Do you know what Rilutek is and how it helps. Thank You

[Jane]

Rilutek is a drug approved for use in ALS patients. It slows the progression of the disease is some people.
My sister took it for several months until swallowing was so difficult that she gave up on it.
I hope it will help your friend
Jane

[Syndi]

I feel I owe you an apology. I replied to you and made it about my situation. I posted something else on this site and cant find it. So replying to someone I figured that out and Jane answered my one of many questions. I havent completely figured out how to use this site. I could relate to you cause we just found out too. Dave can still walk but not far cause of his breathing. We borrowed a wheelchair from my Mom. But in one way I think the wheel chair takes away from him doing more walking while he still can to keep those good muscles working. I dont know what your Doctor situation is but we dont have one right now. This morning though we are going to get on the phone and find a Doctor, phyical therapist and a food nutritionist, hopefully. We have been so overwhelmed at the illness. He was 180 lbs 3months ago now 130. So anyways Im still making this about us but my point is to get some opinions about a wheelchair. Should you walk as much as possible even though you get so winded and out of breath? Sandy that posted to this I liked reading what you said . The smiles are so important I keep thinking I will run out of tears eventually but so far I have plenty left. So much to say Ill stop for now.
Syndi

[Beebe]

Hi there, My son-in-law was dx on April 17th at Jefferson hospital n Philadelphia. That day is still a nightmare to us. We are working to fight this disease. Jack has a lot of support from family and friends. This is very important! My daughter started an organic food diet and mega vitamins for Jack. His metal levels were high and are just about normal now. He gained six pounds which he needed he is healthy if not for the ALS. Jack started with weakness in fingers and arms twitching in arms and legs. He is on rilutec and takes quinine. He has weakness in legs after walking a lot but pushes himself at times. At what point is your friend ??? How old is he?? Jack will be 42 on the 26th of June. Hang in there we are all in this together.. My Best, Beebe

[TRACY22]

maybe i should stay away from this site but i will contib just a bit. Save your bucks on the vitamin stuff. a balaced diet of good fresh food we enjoy is better than the snake oil companies and ML sales push. there is no cure. we survive and make the most of each day or moan and blame others. our leg and arms are not going to get better! get the nice wheelchair and go for nice drives and get out. the more u exersize,yup, the faster ALS progresses...if u want a fight, fight 4 modifing your environment to meet your changes. fire the drs that dont prescib chairs,meds that allow u to eat, sleep, go to the bathroom....tired.. gonna watch nascar have a beer and take the chair outside later... luv ya but stop moaning....oh..have had it 2 1/2 yrs

[Beebe]

I was taken back by your response. I found it to be very cold. I understand you are angry no one wants this disease but we are here to encourage and support one another. What ever it be vitamins , organic foods etc if it helps or not we do not know. But hopefully one of the new drug studies will prove successful. We can HOPE!!!! My Best to you, Beebe

[ladave]

maybe i should stay away from this site but i will contib just a bit. Save your bucks on the vitamin stuff. a balaced diet of good fresh food we enjoy is better than the snake oil companies and ML sales push. there is no cure. we survive and make the most of each day or moan and blame others. our leg and arms are not going to get better! get the nice wheelchair and go for nice drives and get out. the more u exersize,yup, the faster ALS progresses...if u want a fight, fight 4 modifing your environment to meet your changes. fire the drs that dont prescib chairs,meds that allow u to eat, sleep, go to the bathroom....tired.. gonna watch nascar have a beer and take the chair outside later... luv ya but stop moaning....oh..have had it 2 1/2 yrs

The question of exercise is not as clear-cut as you claim. The traditional belief was that PALS should "conserve" energy. However, more recent studies are to the contrary:

http://www.sciencedaily.com/releases/2005/11/051114110717.htm

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=11677004

A detailed clinical trial is currently underway to investigate the issue:

http://www.clinicaltrials.gov/ct/show/NCT00160004;jsessionid=C6C35BE00C7AE99E0 7084ABBEB977742?order=6

My own neurologist and physical therapist are strong believers in regular exercise. I am on an exercise program and I definitely feel it is of benefit to me. In fact, of all the things I've tried so far (supplements, dietary changes, Rilutek) exercise and a positive attitude are the only things I truly believe have been of benefit.

Oh, and btw sharing information and supporting each other is not "moaning" or "blaming others".

[Al]

A little brutal Tracy22. Each to their own opinion though. Isn't it nice we live in places where we can still be a little politically incorrect? I may have seen a bit of moaning here but we all deal with this in our own way but haven't seen any blame getting thrown around. You do offer some good advice albeit a bit harshly. Hope you have a better day tomorrow.

[hope]

TRACY22,

A diagnosis of Als is very frightening. It is horrible, it is a nightmare, you want to wake up from this nightmare but it does not go away. It is absolutely devastating. We are all devastated, we are all trying desperately to cope the best way we can. I believe in any illness it is important to hold onto hope, hope that one day there will be a cure. Life is precious and when one is faced with something like this it is hard to know what way to truly feel. There is so much to cope with and yes there are days where I will moan and groan, I will cry like I have never cried before, I will feel angry, I will feel so sad that my heart feels like it is crushed but as long as there is a breath in me I will fight for my loved one who has this disease, I will put hope into his heart, I will hold him, love him, and take wonderful care of him. When he is scared I will do my best to help take away some of the fear. Life is about loving one another and holding on. Holding on to the beauty that there is in life. No there is nothing beautiful about ALS but there is beauty in the eyes of my love one. A human being who gave of himself all his life. Always helping others, always holding me up when I feel like I just cannot get up. I know you are hurting tracy and my heart goes out to you, my husband and I know that this illness can make you feel angry but is important to know that all of the wonderful caring people here are fighting for their lives and reaching for the stars in hope that the cure is close. You mention moaning, I believe anyone living this nightmare has every right to moan and understand that you are angry at the disease, you are not angry at us here, you are also trying to cope in your own way and that is okay. Sometimes just saying how one feels helps, it helps others understand how you are feeling today. We are a great group of people here who truly care about each other and are fighting the fight to live. Join us in the this battle, like yourself we are all scared but we are all trying our best to fight the fight.

Sandy.

[TRACY22]

I see on a recent count 450 views to this conversation but what i dont hear is the good times we are actually enjoying right now.(are u posting or just viewing?) I have a share the care group that helps around the house, went to a great ballgame the other week, take on assignment for our board, love speed....some good things........i'd like to talk to other ALS persons, but not always about the downers..... if this is not the site..point me in the direction...........yea im not good with words and many of my als freinds are gone now. yea i'm better off then many people(military disabled vets, alzheimer, ms,etc)..MY HEROS....CAREGIVERS.....angry no...understand where i stand,yup....talk to God every day, my comfort.......

if i upset you its not intended..heck come on over and sit on my porch and play with my dogs and we'll pretend we're at the lake

[hope]

Tracy you are not upsetting me. We all deal with things differently. We all know that this illness is horrible and even though it is horrible my husband and I continue to live the best way we know how. We laugh just as hard as we cry. We are both singers and love to sing and play the music. We enjoy being in our garden, we have animals that we love dearly. We enjoy life every day even though we are in this. We smile, we laugh, we cry, we feel every emotion that a human being feels. I am happy you are not angry. Whatever helps you in what you are in that is okay. We all find our comfort zone. It is so nice to be able to express one's feelings and share with others, yes we may not all cope the same way or feel the same way but that is what makes us all unique. Take care.

Sandy.

[Barbie4]

Hi Sandy:

Great post. Boy, you have all the right words. I have been known to moan and groan a bit myself. I feel I am justified, on some days, to feel that way. Today was one of those days. yesterday, had a great day. So Tracy 22, Good for you for enjoying yourself too. Everyone should have the right to come here and vent or cry if they need to or talk about good days too. I have needed to and the support here helps me. I also believe like Beebe, that we need to have some Hope that there are some things that help ALS and you never know when they might have a break through. We have to have some hope.

Thanks for your heartfelt post Sandy. It helps me sort out my own feelings a little better. I truly feel the way you do on many issues.

Barb :|

[hope]

Barb,

Thank you for the kind words. It is okay to moan and groan, it really is. How can one not moan and groan in this. I have groaned lots and moaned lots, I have been down right snotty at times because to tell you the truth I just do not know what to feel sometimes. To those who do not understand I say to them just imagine what we live, just for one moment. I look into the eyes of my loved one and I feel helpless, I want a cure found yesterday. We all do, we are not robots or machines, we are human beings and we hurt, we laugh, we cry. The other day my husband needed me to help him take the lid of a carton of ice cream, I could see the pain in his eyes as I opened it for him. I gave him a big hug and said it is okay what you cannot do I will do, what I cannot do you will be able to help me. I needed his eyes to tell me is okay, we will be okay, and we hold onto that every moment of everyday. Feel what you feel it is okay.

Sandy.

[Al]

Ok Tracy Where's the porch and can I bring our 2 Border Collies? We do get a lot of readers or lurkers as we call them. Shy? Maybe. Doesn't really matter. If they find something here that helps them through the day then we've made our day better and theirs. Most days you can't ask for more than that. Other than sunshine a good red wine and buckets of money. I was just reading about an Australia ,New Zealand ,Figi trip for 30 days only $12,000 each per person Canadian. Now that's something I could sink my teeth into.

[Barbie4]

Al:

That trips sounds very good. If I win that Hospital lottery ticket I have, I think we should go. Think of all of that Shiraz!!! We will stop the plane at Tracey's porch and have a few with her and maybe even catch some Nascar. ha ha.

I hope I win!!!! :)

Barbie :)

[davis06]

No how you feel . I was dig. with bulbar als in april 2006 also. I hadnt ever
heard of it. It is bad but we will have to carry on. I try to keep busy it seems to help.
I think I had it about ayear before I was dig. I have lost most of my speech but still have alittle. Have been told I need to get a peg for eating but am still eating fine right now. I have alot of cramps and am getting the twiges . I dont think I spelled
that right. Also on bipap. This support group is great I dont feel so alone reading
these posts everybody seems so kind .
Davis06

[Al]

Welcome Davis . Where you from? There are lots of aids to speak for you if you can still use your hands and type. Hang around we'll get you up to speed soon.

[TRACY22]

Good to see you can escape to the internet. The twitches you say, to me just bug me at times but not to big of a thing over all. Pain meds though, caused all of my stomach cramps. dont know if this is the cramps you mean. other cramps like legs, neck arms is caused by myself by not drinking enough or having help stretching..............in our support group many drop out because of bulbar......please dont! the different com devices out there are available and personally i like seeing and using tech stuff so having you come out and enjoy the day with us is cool..:???:

[ladave]

Good times? Ain't we lucky we got 'em (TV reference):) I just got back from djing a dance convention- exhausting, but in a good way. I find I'm going to have to put my music on laptop, just can't handle all the cd's anymore. Am planning to attend another dance convention, this time for fun, in Phoenix over the 4th of July weekend. Then in August comes my Alaskan cruise, from Vancouver to Anchorage. I'm going to spend a couple days in Vancouver, never been there and I hear it is a beautiful city. I'm also continuing to work at my job, which gives my life purpose.

Yes I'm scared of what the future holds, but life is a gift and I'm gonna enjoy the time I'm given, best I can. So if I'm here a bit less at times, it is just because I'm out living and trying not to obsess about the changes the disease is throwing my way. Positive mental attitude is the one thing long-term ALS survivors have in common. And I intend to be one of them!

[Al]

Dave My in-laws took that cruise a couple of years ago and the pictures were great. I'm sure you'll love it. Vancouver is a very vibrant city but beware people trying to sell medicinal marijuana and mushrooms that you don't eat with your steak. Have a great time though.

[ladave]

Al, my brother tried those mushrooms back when he was in college, long ago and far away. I heard it was a whole different kind of trip:)

[Al]

Yes from what I understand you can go far but never leave home. Kind of like Star trek reruns.