New? Introduce Yourself - Say Hello

[MtPockets]

Hi Liz,
Know for sure you are not alone here. I'm sorry you find yourself here on the forum, but know it is a friendly place with many others who care. We have all walked the path you now have begun to travel and I hope we can make your journey a little easier. I know everything seems overwhelming, it did to me. I was DX may 11, 2006.

Feel free to ask for help, questions, anything or just vent your frustrations. We understand.

I pray God will help give you direction, wisdom, and peace as you face this terrible disease. Let us know if we can help.

God Bless
Capt. AL

[gdts]

Just wanted to say hello and thanks to my father (AL) through reading some of the help he has brought to others shows me the one thing I always knew is that you are a GREAT MAN and always have been!!! and I am very proud to share him with all of you thanks Dad we'll always love you.

Chris

[GinaD]

I stumbled here last night and just after reading a few posts, I already feel like maybe I've found someplace to talk. My wonderful father was diagnosed Sept 30, 2005 with bulbar onset ALS and I feel like I've been through 410 days of constant grief. I feel like I have to be Miss Suzy Sunshine when I go see him, I have to be the "rock" for my mom, I have to be the cushion for my sister who is living in denial, plus I have to carry on a somewhat "normal" life for my kids and husband. Inside I'm curled up in the fetal position overcome with grief and sadness and I'm finding it harder and harder to put one foot in front of the other. I do have peace about the "final" outcome (unless God performs a miracle of course) but it's just all this suffering that has to go on in the mean time! Anyway, thanks for allowing me to vent.

[Al]

Hi Gina. Welcome but sorry you have to be here. This is a good place to vent. We understand. Can I give you a bit of advice. When you feel that you absolutely just have to scream, go into the garage and get a piece of wood and drive about 6 three inch nails into it with a big hammer.It's a great frustration reliever. Hope it helps. AL.

[GinaD]

Oh Al, good idea. Knowing how I am, I will probably miss the nail and give my thumb a good whack which in turn, would definetely give me something else to think about for awhile. :-D

[felicia]

hi, having problem navigating around. where do i go to start a new thread? or do i continue on with the first message. felicia

[ljtaylor]

:) hi, having problem navigating around. where do i go to start a new thread? or do i continue on with the first message. felicia
HELLO FELICIA AND ALL OTHERS, I AM HAPPY TO HAVE FOUND YOU ALL. YOU ARE LIKE MY NEW EXTENDED FAMILY. I FEEL SO ALONE AT TIMES, EVEN WITH MY WONDERFUL HUSBAND HERE ALL THE TIME WHO IS MY EXCELLENT CAREGIVER I STILL FEEL THERE IS NO ONE LOCALLY AROUND MY AREA THAT I CAN TALK TO THAT IS GOING THROUGH THE SAME THINGS THAT I AM. I STILL DON'T KNOW HOW TO USE THIS SYSTEM COMPLETELY, BUT I AM GETTING AROUND ENOUGH TO HELP ME AND THAT IS WHAT'S IMPORTANT. THE WONDERFUL THING IS WHILE WE ARE TRYING TO FIND INFO TO HELP US, WE CAN ALSO HELP OTHERS IN RETURN. IT IS LIKE "PAYING IT FORWARD.

MY BEST TO US,
LOIS"

[redlipp]

hello everyone here, i have a parent that we're waiting for a second opinion for a diagnosis of als. my dad has had dysphagia since a anterior cervical spine surgery in early may and has been being fed thru a peg tube since, after his surgery we thought his dysphagia was due to the surgery complications that now after doing much internet research and reading is a fairly common occurance with that type of surgery. we're still hoping that his swallowing will return and he'll be able to eat again and the dysphagia wasnt' brought on from als.

[Debbie's Sister]

My name is Stella and I live in Ohio. My sister's name is Debbie and she has ALS this is her 11th year -- she is so courageous and so his her caregiver husband.
I'm very happy to learn of this group. Thank you.
Stella

[MtPockets]

Glad you found us. Welcome to the world's best and worst club to be a member of, sic.

God Bless,
CAPT. AL

[Al]

Hi Stella. Jump in when you're comfortable. Welcome. AL.

[Robie]

HI, I am feeling pretty alone and wondering what I should do. This was a blindside. Robie

[liz]

Robie -

You are NOT alone.

"Blind-sided" is the exact work my husband to used describe how he felt when I was diagnosed. Nobody thinks about something like this happening to them.

Explore the forum and let us know a little more about you. We're all here with you.

Liz

[Harper]

HI, I am feeling pretty alone and wondering what I should do. This was a blindside. Robie


Robie ...

Only someone with ALS would understand how you feel relative to being alone -- probably an experience we've all had since we share an illness, but know how unique it is to each of us. In so far as what you should do -- keep reading the various postings and add your own. It will help, maybe not right now, but soon.

Harper

[robert]

Greetings all. Thanks for the site, and hope to contribute in some way and improve my navigations skills around the threads and forums (fora?). I was dx in 3/06 ; first sym in 5/05 with onset in legs and then hands. I owe a lot to some very good friends, as I'm sure we all must, and look forward to interacting with some of you. Robert.

[Al]

Welcome Robert and thanks for the bio. Sorry about the reason you're here but jump in whenever you feel like it. AL.

[BigHeart]

Hello....My name is Janice, and I live in San Diego, Calif. I first learned about A.L.S. 5 or 6 years ago when a friend came down with this horrible disease. I became one of his many caregivers, when his mom got a Share the Care team together. I found the experience to be very rewarding, and it touched a place in my heart that I still carry with me today. It wasn't long before I found myself doing volunteer work for the local ALS Chapter, and I now work for the association full time as a driver. I drive patients to and from their doctor appointments, and deliver much needed equipment to their homes. My friend has since passed on so I have his picture hanging from my rear view mirror, as a reminder (not that I need one) of why I do what I do.

I want to thank you for this support group, and I look forward to sharing my experiences and learning more about what I can do to help, or just get my frustrations off my chest.

Janice

[Al]

Thank you Janice for joining and sharing your knowledge with us. The world needs more caring individuals like yourself that will take the time to help others. Welcome. AL.

[liz]

Janice-

I think it is wonderful how you are helping others with ALS. I'm positive your assistance is making a huge difference for folks. Glad you've joined us.

Liz

[lowlander]

I think I originally posted this in the wrong thread so I moved it here. I hope this is the right place to post. heres my story:

Hi, I have been " lurking " for a couple of weeks now but I feel the time is right for me to introduce myself. I am a 43 year old female who lost her mother and her brother to als.My mother passed away in 1968 after als for a year, my brother passed away in 1989. My mother was 29, my brother was 30. About 2 months ago I thought I had restless leg syndrome, it lasted a couple of weeks and then I moved on to other symptoms. I would walk up a set of stairs and my legs would be tired. So thats about where I am today my legs constantly feel like I have pulled mucsles. Its not the same muscle, its different parts of my leg, both legs are affected. Today I spent walking the mall shopping and then took a mile walk when I got home, while trying to cook dinner my one leg seem to be shaking. It wasn't noticable, just the sensation of being shakey. I have not been to a doctor yet. I thought I should get life insurance before going to see a doctor. The insurance goes through next week so I will go to the doctor after that. I have read the post about first symptoms, I am not sure mine match? I am not sure I know what the definition of atrophy is. Does it sould like I have atrophy ? I know with my mom it started in her arms, with my brother it started in his legs. I guess I could call my ex sister inlaw but at this time without having anything concrete the less people know the better I think it is. My sister has already started me on a bunch of vitamins, the same ones that I read about everyone being on. Could they make those things any bigger ? Has anyone had first symptoms like this? Sorry so long. You are all such an inspiration Thanks Mo

[liz]

Hi Mo -

Welcome to the forum.

I think your idea to update your life insurance before getting a documented diagnosis is brilliant. Do it! I kind of got blind-sided with my dx and upgrading my life insurance is obviously no longer an option but really wish I had better coverage - one of those things I put off just a little too long.

There's a thread about atrophy including pics which you can find if you browse.

Nice to meet you. :)

Liz

[lowlander]

Hi Liz, I live about 30 minutes from albany. What a small world. Thanks for the respond to my post. You and your family are in my prayers. Are you going to the st peters als center? Glad to meet you as well Mo

[liz]

Hi Mo-

No kidding, small world.

Yes, I started at St. Peter's ALS Clinic at the end of November with Dr.Cooper. They just recently moved to a new location off of Fuller Rd. near 87N. If you want, send me a private message with your location and we can see just how close we are.

Liz

[Lynn555]

Hi Everyone, I'm Lynn, and I'm new. My mother (79) was just diagnosed with progressive bulbar palsy in November 2006 by the Mayo Clinic (AZ). She started having symptoms 8 years ago, so this is progressing very slowly with her, and I'm glad. She started out with her speech slurring and getting slower and her tripping over words with more than one syllable, and then her speech got progressively worse, harder for her to speak, and harder for us to understand. Now she can barely speak, it just comes out garbled, and she writes things down. Then she started having trouble chewing, and that got progressively worse. Now she eats soft foods only, like eggs, tuna, and oatmeal, and lots of Ensure Plus. She can barely move her tongue at all. She has lost around 40 lbs. She is also having problems with drooling. At this point, she does not have fasciculations or significant limb weakness, and she is not on a feeding tube, as she can still swallow okay. But she is walking slower and her handwriting has changed, and she's finding it harder to hold a pen properly. So it might be bulbar ALS. She is depressed and overwhelmed, and I'm trying to be as supportive as possible. I've done a lot of research on ALS, and it is overwhelming and I'm very moved. My heart goes out to everyone whose lives are touched by this. I found an ALS support group in my area (Los Angeles, CA), and we have gone once, and we look forward to going again. This forum looks like a very nice, supportive, informative place, and I'm glad I found you. :)

[GNWtransplant]

Hello and thank you for being a valuable source of information out there on the world wide web. So far this is the most comprehensive information I've found on people affected by ALS (both patients AND caregivers).

I was talking on the phone with my aunt last week when something I said alarmed her to the point of actually getting kind of crabby with me. I've never heard her lose her cool or get noticably upset during my entire life.

Almost two years ago I went in for an MRI after telling my primary care physician that I had fainted twice in the same day. A few days later I got a disturbing call from my PCP with the preliminary results of my MRI which said abnormalities were consistent with MS and I should be tested further.

I've suffered from migraines for almost 20 years now (although remarkably better on vitamin therapy for the last two years), so I called my neurologist to follow up. I went through a battery of tests including nervous system functioning, a spinal tap (lumbar puncture) and evoked potential testing. I received the results about a week later in his office, "you don't have MS."

I went on about my merry way although I did wonder why my MRI had changed from years earlier. Could my nearly two decades of dibilitating migraines have caused the abnormality on the MRI? I put the thought behind me.

As I was talking to my aunt, she asked about my prior testing for MS (she has a lifelong friend with the disease) and asked if I had any continuing symptoms. I told her that occasionally I have muscle weakness and attributed it to fatigue from sometimes always spreading myself too thin.

I went on telling her that I was really feeling my age lately (I turned 40 in May) because I felt like I was losing the strength in my hands and frequently dropping things. I told her, "I'm always in a rush, doing too much and I'm just clumsy." Occasionally while sitting at my desk at work, on the sofa at home or in bed at night, I have muscle twitches (mostly in my upper body) in areas that I haven't worked out on. I told her now that I'm older that I just can't keep up and no matter how much I work out I just don't seem to gain much strength and that my leg muscles have lost any shape they once had in my 20s. Also, turning older has made me more, rather than less, emotional in certain situations. I have no breathing or speech difficulty other than my usual habit of speaking too fast and stumbling over my words occasionally. Sometimes I feel like my brain is working at twice the speed of my body.

Normally I wouldn't put much weight in someone overreacting, but my aunt was an administrator for a county run hospital in the states for decades. She is not a doctor, but over many years has seen her share of conditions, symptoms and tradgedy in her career. She was noticeably alarmed and asked that I make an appointment to see my neuro again. She demanded that I ask him about testing for ALS.

I'm seeking any information on whether my symptoms are even consistent with ALS, can symptoms of MS potentially be simiarl to ALS. If my symptoms are possibly consistent with ALS, what questions should I be asking of my neuro when I go for an office visit? Are there specific tests I should request? Is it possible to have early symptoms, test negative and later be diagnosed with ALS? Is there a reliable test for early diagnosis? Is there anyone out there who has had ALS for a number of years since diagnosis without progression of the disease?

I checked out information on the Internet after talking with my aunt and quite frankly it is a little disconcerting I just turned 40 this year and I live 2,000 miles away from my immediate and extended family, although I have a strong network of friends near me. Professionally I work as a financial consultant and I'm used to being able to research a topic to find the answers. The prognosis and speed of ALS from the time of diagnosis is alarming. Any information, guidance, advice is greatly appreciated.

Thanks much and Happy Holidays!!!

[Al]

Hi GNW. Welcome to the forum. We've had people here that have been told they have MS and then later be told it was ALS. There is no one test for ALS. They rule everything else out and then say you have probable ALS. When you get real bad then they can say with certainty that you have it. Some people take 10 years to progress but 2-5 is more likely. AN EMG test and a NCV test as well as Lyme's disease would be a good place to start with tests. Most have an MRI done as well as a spinal tap. And then you wait. Usually to see if more symptoms show up. There are people here with no firm diagnosis after a few years. Don't expect any quick answer because with ALS every patient is different. Similar but different. Good Luck. AL.

[MtPockets]

Welcome to the forum GNW and Lynn.

I hope you can find answers to some of your questions here and know also we have all walked down the path you are now taking. You are not alone. I know that's not much comfort, but know that we care and will try our best to make you feel welcome here and assist you in any way possible. Please feel free to share anything that is on your mind, we understand sometimes it helps just to have someone to talk things over with.

Merry Christmas and Happy New Year. And may God grant you peace as you seek answers.

God Bless
Capt. AL

[Grumpy Old Coach]

Hello everyone! It's my first time/day/reply on the forum. Read some posting from the past - a lot of information. Thanks to the originators. I'm slow right now, but I'll be a regular visitor.

I'm not really "grumpy". Just an old coach that was pretty demanding. Softened over the years. Ended up being more like the "Staypuff Marshmellow Man" :-D than a "Grumpy Coach".

[nikichem]

In May my sister started having weakness in her arms and falling a lot. Now she can't walk unless someone is supporting her, she can't get-up without someone supporting her. They did a CT scan, MRI, MRA, plain x-rays, and numerous blood-tests - all those tests were negative, they then did a nerve conduction study that revealed problems with her motor neurons. Her neurologist did not say what could cause the motor neuron problems but the doctor said she was referring my sister to another neurologist who specializes in motor neuron disorders. While the doctor was out of the office I looked up this information in my home medical dictionary and had a list of motor neuron disorders. When the doctor returned I asked her if there was anything else it might be besides those and if the doctor could eliminate any of them. The doctor said that she did believe it was one of those and she eliminated all except for ALS and PLS. I don't think it is PLS since she has gone from no symptoms to unable to walk unassisted in eight months. She is also having fasciculations in her arms and legs the ones in the arms really do look like a bag of worms under the skin. In December my sister fell trying to go to the bathroom and she broke her right arm and had to have surgery to remove three bone fragments and put a metal plate in her arm. This week her doctor said that she should go ahead and apply for disability (she hasn't worked since July but she has been drawing unemployment because she lost her job); and she needs to start using a wheelchair. Before the doctor said any of this stuff my sister said that she did not ever want to need a wheelchair because they are so uncomfortable. We have a manual wheelchair that one of my loved ones used many years ago that we have given her to use right now but she has refused to use it at all. My sister and her husband and our mom refuse to believe that she has something that is going to get worse instead of better; they don't want to talk about or plan for what might happen. My sister lives in a small house and her husband has stage 4 melanoma that he has been fighting for the last 14 months. She also has a 13 year old child. I would like to sell my house and have a house built that her family can live with us but my husband while he is happy to take their child does not want to sell our house or let the whole family live with us. I am upset with my husband over this. My dad says that their family is not ready to consider that they may need to do something else. I am so sad I have cried almost constantly since the doctor told us all this on Wednesday. I need emotional support and I have questions.
1) Am I wrong to think that she does have ALS when the doctor has not said that is what it is? The doctor did refer her to the ALS Center in Winston Salem.
2) Which is better the ALS Center in Winston Salem or the ALS Clinic in Charlotte?
3) When she applies for Social Security Disability doesn't she need to be able say what she has and if they have only said a motor neuron disorder, unable to write, stand, or walk is that enough; I read that if she has a diagnosis of ALS it is faster and easier to get the disability. Her unemployment runs out in a little over a week so she needs something soon.
4) If they own their house but it is too small and inaccessible for a wheelchair are their options where their family can stay together because I know that she is going to want to be with her child and her child will want to be with her. (I am sorry for being so generic with my sister, her child, etc. but I don't want to violate her privacy if she is not ready to share the details of her health.) Note: Right now they will not let anyone into their house because they say it is too messy and cluttered for them to let anyone in. They like their privacy. Her husband does not like for anyone to ask him about his cancer he just says that if he needs help he will ask for it and if he doesn't ask then don't ask him. (I don't want to make it sound like they are not friendly before his cancer they were the most fun to be around and we wanted them to raise our daughter if anything happened to us.)
5) Given the information above what advice do you have for me?

I am very sorry this is such a long post. Thank you in advance for any support.

Regards,

Nichole

[Al]

Hi Nichole. Welcome to the forum and I am sorry for your problems. The ALSA has an office in Raleigh phone # 919-755-9001 or 877-568-4347. They might be able to answer some of your questions about aid for your sister. I think we have some members from N.C. but it might take a few days for them to see your post and give specific information about your state. In the meantime you can look on this link for S.S information. AL.
http://55jer.com/randysalsmanual.htm#COPING_WITH_ALS
The information you need is about half way down.

[JennaJan]

My name is Jenna. I am a 22 yr old, senior nursing major at Illinois Wesleyan University. I just found out a month ago that my father was diagnosed with familial ALS. He has lost his mother, brother and sister to the disease. My dad was told he has about 4-6 months and just in the last month has begun to decline quickly. It was started in his throat. He is struggling to talk and can't really swallow. The doctors placed a feeding tube last week. I am really struggling with his diagnosis as we lost my mother 16 months ago to leukemia. I don't really know where to turn for support considering none of my friends or anyone I know has lost both parents. I am very close to my sister and brother so they have helped but I need someone else to talk to. If anyone has any ideas of where I can go for support I would really appriciate it. Thank you.
Jenna

[Al]

Hi Jenna. I'm sorry to hear about your dad. Familial ALS is harder to deal with because you are always waiting for the other shoe to drop. I don't know where your university is located but if you go to the ALS Association webpage they have listings of chapters and support groups. Most of the larger schools have counselling services but they probably don't have much experience with ALS. This is a pretty good place for information and support and if you need a shoulder to cry on or to vent your frustrations feel free to do it here. We will try to help you as best we can. AL.

The ALSA is at www.alsa.org and look under In your community.

[CeeCee]

Hello, a family member as PBP and I am the primary caregiver. We are particularly interested in any information about ventilators--all pros and cons. He will have to make this decision sooner that we would like. Thank you for sharing your thoughts and experiences.

[Poco]

Hello my user name is POCO my symptoms are in the upper arms and chest.

My question is : Is anyone having any success with Rilutek?

I was having complications so I went to 1 Tab a day = 1/2 prescribed dosage.

Is anyone having success with acupuncture or the regimen noted in Eric is winning?

[liz]

Hi POCO -

Welcome to the forum.

I don't know that any of us could say for sure if we are having success with Rilutek since we can't compare to how we'd be doing without it. I can tell you that I've starteed it about eight weeks ago and have had no trouble with side effects.

When were you diagnosed? Why are you only taking a half dose? Do you go to an ALS Clinic?

You can do a search to find threads that discuss the Eric is Winning topic and maybe acupuncture too.

Hope you're doing OK. If you like, share a little info about yourself - age, where you live, etc. so we can get to know you a little better.

Liz

[Al]

Also look at our scam watch section. Eric is winning all the way to the bank. He's a suspected scammer. Some people have found acupuncture seems to help for a while but I have seen no long term effects. Rilutek is like taking an aspirin a day for your heart. You will never really know if it is doing any good. Welcome to the forum also.
AL.

[Poco]

Poco

Glad To Be On Board.

[givenin]

Hello all

This is new and not so new but all the same scary, I am a spouse of a ALS patient. There has been so much advice given, Doctors know nothing, Chelation the only way to go, the latest is Stem cell therapy.... oh and my husband has Eric's winning and treats it like a bible. We live in a small town and have been told that there are 4 others with ALS here. We will have to sell our home as I won't be able to keep it up myself and it is not suitible for the things that are to come with this disease. Seems now that I look back that the symtoms have been there for years but just this last summer have really come forth, muscel weakness, speech problems, cramps, twitching all over and problems walking. We have two children who have been only told that their father is ill and won't be getting better.
I am tired and it only has just begun.

[liz]

Givenin -

Many here understand how you feel. This is totally overwheming news. How to handle the kids, what to do about the house, how to cope with the whole thing - it is all addressed here. Not feeling alone can help things become more manageable and this forum can help you with this. Glad you've joined us.

Liz

[MtPockets]

Welcome to the forum Givenin, Poco, and all other new members. Don't be afraid to vent, ask questions, cry online, whatever, we have been there done that too. You are not alone. We truly do feel and understand where you are at and the emotions that seem to overwhelm you.

Different people learn to face this terrible disease in their own ways. We are here to support anything that will help you make it through the tough time ahead.

Their is light at the end of the tunnel and it's not a train. (Humor sometimes helps us deal with these issues.)

Also many take this time to get in touch with their spiritual side, to seek God for peace in the midst of the storm. If there is any way we can help you make this journey more pleasant, don't be afraid to ask. There are many of us here who have given our lives, what there is left of it, to God. We have found peace through our faith.

Just so you'll know I was DX with ALS May 11, 2006. I am currently in a wheelchair and have lost muscle function in my legs and lost 30% of Lung capacity.

God Bless
Capt AL

[Poco]

Liz,
I Poco am 64 and had a maternal grandfather who died of ALS decades ago. The Riulutek caused a very active form of Diahrea. It stopped when I cut back. First symptoms began about 5 months ago when I was placed on a very high dose of statins gradually Ilost my ability to raise my arms my neck started to slouch and hurt. That has gotten worse and and my arms and hands are now almost useless. I stack my breaths to eliminate mucous and sleep with a Bipap. Legs and voice still function but experience general fatigue throughout the day. Have a great family/friend support system and therefore am able to stay positive.

[JACKIEMAX]

hello everyone.

i am very new to this site, but so thankful i have found it. my husband, age 70, was diagnosed with als about a month ago, but his symptoms began about a year ago. so far his symptoms are; fatigue, awkward walking, unable to walk upright, cannot do anything precise, like buttoning shirts or using a key, with his right hand/fingers, shortness of breath. he is now on oxygen at night, but that's all the treatment he is receiving at this time.

what should we expect to happen next? is there any progression of symptoms? would love to hear from any of you that are still in the 'early stages'. what will happen next?

jackiemax

[Al]

Hi Jackiemax. Welcome to the forum but sad that you have to be here. The progression of this disease is a hard thing to gauge because so many of us progress differently. I just lost a friend that was gone a year after diagnosis and I'm still here 4 years into it and there are people here that have had it more than 10 years. Are you in Canada or the US? Have you registered with the ALS or MDA Organizations? Your husband's symptoms sound like some of mine about 2 years ago. You say he is on oxygen at night? Is it a Bipap machine? Does he go to an ALS Clinic or just a general Neurologist? Sorry for all the questions but it does make a difference in the answers.
AL.

[g. roberts]

Hi, thought i had better introduce myself, although I am not new to ALS (DX 1-2003) I am new to your site and I must say it looks to be a great group of people here. My name is Gary, from Madison WI. I am 51 years young and like I said was DX'ed in January of 2003. I am looking forward chatting with you all. Gary

[Al]

Hi Gary. Welcome to the forum. I was wondering if you could do a small favor for us. I hate to ask a new member but noticed in your profile that you are vented. In the Healthcare Professional Forum there is a thread about To tube or not to tube. There is someone there asking for information about vent's/trach and I have no personal experience so if you could either post on there or send them a private message it would be greatly appreciated. If you are not comfortable doing that I will understand. It is post #51 on page 4 by teej. Thanks
AL.

[g. roberts]

Hi Al, thanks for the welcome. Its no problem at all, I would be happy to share my experiances and to help in any way I can. Now you have to remember I am not as computer savy as most of you, even looked for the book forums for dummies, but none to be found. If I have any problems contacting Teej I will let you know. Thanks again for the welcome. Gary

[Kevin_]

Hello,

My name is Kevin and I am from Markham, Ontario in Canada. My wife Jennifer is also a member on this forum but sadly she can no longer visit as her progression of Bulbar Pasly has prevented the use of her computer.

I just wanted to come here to share some of my experiences as a husband and caregiver that I am having. Although I could never know what it is like to have ALS I can only imagine what she is going through.

I would just like to say hello to everybody and hope I can share my thoughts and views with others here and perhaps others here can help me cope with this dreadful disease that my beautiful wife has.

Thanks for reading!!

[shud]

Hi my name is shud (nickname from school)
I'm so happy to have found this website.
Regards from not so sunny Cyprus.

[liz]

Hi Kevin -

Sorry to hear Jennifer can't connect with the forum anymore but it's great that you've signed on. I'm very interested to hear a husband's perspective as a caregiver. My husband is concerned that he isn't up to the task.

Hi Shud -

Welcome to you too. What sort of health care system do they have in Cyprus? Can you get specialized care for your ALS? Glad you found us. This forum can give you a lot of support and useful information. Hope to hear more from you.

Liz

[Al]

Hi Kevin and shud. Welcome and jump in when you feel the time is right. AL.

[DouginDet]

Hello everybody Im Doug, I have Bulbar Palsy for about 3 years or so now, still driving going to the gym , eating well not choking, but I have a very horse voice and am off balance most of the time but otherwise very well for what I have. I heard that the Clevland Clinic is doing some research on bulbar Im still waiting for my insurance to go threw so I can see my other options. I want to tell everybody that I have had symptoms for about 7 or 8 years but maintaned myself in the gym and taking liquid amino acids by twin labs and B12 . It really seems to help when im having more symptoms I eat alot of peanut butter it might not be anything but it wouldnt hurt to try it out its been helping me. I worsend with my voice when my mother passed away almost 2 years ago now but stress is a no no. I also think not being affraid helps I just live day by day and pray also. God Bless everybody Please let me know if any of the info I gave helps, and if anybody needs to talk at anytime please let me know I will give out my phone number. Take care.

[JACKIEMAX]

Hi Jackiemax. Welcome to the forum but sad that you have to be here. The progression of this disease is a hard thing to gauge because so many of us progress differently. I just lost a friend that was gone a year after diagnosis and I'm still here 4 years into it and there are people here that have had it more than 10 years. Are you in Canada or the US? Have you registered with the ALS or MDA Organizations? Your husband's symptoms sound like some of mine about 2 years ago. You say he is on oxygen at night? Is it a Bipap machine? Does he go to an ALS Clinic or just a general Neurologist? Sorry for all the questions but it does make a difference in the answers.

AL. thank you al for answering my post. we live in the united states, tennessee to be exact. he is being seen at the vanderbilt hospital als clinic in nashville, tn. the oxygen at night is that he puts a tube inside his nose that is connected to the machine. is that a bipac??? he is not using the full face mask at this time . we had to see several neuologists, and have 2 or 3 emg tests before they finally dx als about 2 months ago. his symptoms began last january, 06. we are blessed that we are only 90 miles away from this great als clinic, and we will be going back and forth as needed.

my husband still drives, can swallow and chew fine, but he has shortness of breath, has bad coughing spells about every day, and every morning spends about one hour coughing up phlem. i read in this forum last night that 90% of als patients die from phlem and just stop breathing. just frightened me to death.

this is a monster disease and it's like waiting for the other shoe to drop. since his respiratory problems came on before bulbar, swallowing problems, what is that significance????

he has to sit down to shower, to dress and undress, to shave. it hurts his back to stand up and sit down. other than that, he experiences no pain.

would love to hear from anyone else that can help out with my questions.

thank you. jackiemax

[hkohlman]

Hi Givenin, I am sorry to hear about your Husband. My Dad has Als and is a great Grandpa also. We have decided not to tell our children ages 8 and 10 that Grandpa has ALS. I decided it would be best to tell them when they started to ask questions. How old are your children? I will keep my prayers with you and your family. I hope it helps for you to know that you are not alone. This is a great place to find many answers and get the great support it gives for those tough times ahead .
Heather

[Al]

Hi Jackiemax. It's not quite true that the phlegm is the cause of death but the 90% dying in their sleep is more or less correct. Lying down with a diaphram and chest muscles atrophied leads to a build up of carbon dioxide and a lessening of the oxygen in your lungs and your brain just forgets to tell your body to breathe. That's it in simple terms. The Bipap helps your lungs to keep moving and keep the air moving so the levels stay where they are supposed to be. Straight oxygen usually doesn't help ALS patients much because their lungs aren't working enough to use the extra O2 being supplied to them. There are exceptions and your Pulmonologist or Respirologist should explain that to you.
But then if you didn't know to ask they probably wouldn't think to explain it.
There are drugs that the Doc can give your husband to help with the phlegm. Does he drink a lot of milk or any other other dairy products? These tend to make extra phlegm.
Hope this helps.
AL.

[JACKIEMAX]

al,

thank you so much for your answer, and i will more than welcome any other information anyone reading this can share with me. this is all new to my husband and me, and we are just in a daze about all this. when he explained to his primary care physician about his shortness of breath, the pc physician sent him to an ent specialist who examined him and said he saw tongue twitching which we had no idea was happening. the ent sent us to a respitory specialist who ordered a breathing test. the results, they told us, were not good, but not life threatening, so they sent out a technician with the oxygen machine which helps him sleep a little better.

please explain to us what a bipac is, and should we ask our als dr. at vanderbilt clinic about changing to this in lieu of plain oxygen??? as for anyone explaining anything to us, we have had to literally beg doctors for information about als, and what we should do, and have rec'd very little input back.

if he should not be using the oxygen and using a bipac, which we have no idea what that is, please tell us and we will see what we can do.

having him stop breathing in his sleep is about more information than my heart can handle, altho i 'have' to know everything i need to. reality is scary. i'd love to hear from any of your forum members about this.

thank you and God Bless.

jackiemax

[MtPockets]

This may help you with some of your general questions:
On the Yahoo Living with ALS website and there is a posting about Dr. Rick Olney's daughter Amy doing up this ALS Manual. He was a noted ALS researcher who contracted the disease himself.

This information was given to me by Al quite awhile ago and it helped me greatly.

God Bless
Capt AL

[KellyW]

I would like to say thank you the the founders of this forum.

My father in law was diagnosed with ALS in the fall of 2006. No one in my husbands family wants to talk about his illness, it is like the big elephant in the room that no one sees......

I came here in search of answers and support and in sight.....

Thanks for your time.

Kelly

[harley101]

Hello everyone. My name is Kristen. My mother n law was diagonosed with ALS in August and I am here to get support to help her and my husband get through this. Thanks so much!

[Al]

Welcome Kelly and Kristen. Sorry that you have to be here but glad you found us and we hope to be able to help. AL.

[vic0613]

Just wanted to say hi to everyone. Glad I found this place my husband was diagnosed about 6 months ago with bulbar onset. Hope to be talking to everyone soon.

Vickie

[Al]

Hi Vickie. Welcome. Hope we can offer help and support.
AL.

[Raymond B]

Many thanks to Al for helping me find this site. I look forward to sharing thoughts, feelings, symptoms etc, etc. with all. I suffer from progressive MND with a probable diagnosis from Mayo as PLS. Glad to have found you.

Raymond B.

[vemma]

Hi everyone,
I've been lurking daily for about 6 months...shortly after a close family member was diagnosed with bulbar als. I have done tons of research, but the best information I've found has been through this wonderful forum - thank you to all who contribute your wisdom, experience, courage and support.

[Al]

Welcome Vemma. I hope that we can be of some help to you. AL.

[James]

This is my first time here so I'm going to browse around and get familiar with everything. Happy to be here:D

[MtPockets]

Welcome to all the new members. I hope you feel at home and jump in with any questions you might have. This is a friendly group of caring people who are going through the same things you are now facing. We only want to help. :-)
God Bless
Capt AL

[liz]

Hi James -

Welcome to the forum. Your bio says you've been dx'd with ALS. If this is new for you, I recommend browsing lots of the old posts. This gives you a good overview of issues you may encounter, information and resources you can access, and an introduction to the folks who visit here.

Nice to meet you.

Liz

[James]

Thanks Liz for the info thats what I will do browse the old information and see what I can find. Thanks again James

[hopingforthebest]

I am new to this forum and pray for you all since getting acquainted by reading your posts.

My husband, 57, has been sick for the past 9 months. No pain at all. Muscle wasting in both shoulders, numbness in both arms and now having difficulty with his neck (he says it is hard sometimes to keep head up)

He has been seeing a local neurologist that feels it is MMN (Multifocal Motor Neuropathy with Conduction Block). I asked for a recommendation to go to Phila. and we saw a specialist at an ALS Clinic that performed more extensive EMG and doing a spinal tap next week. He, the ALS doctor, told us to hope for the best but a possible dx of PMA as he has seen very few cases of the MMN.

We are trying to process all this and it is mind boggling.
While my sweet husband sleeps, I search the internet and found your wonderful site.

Sorry I am posting so long on this thread, but I am clueless when posting a new post and not a computer person.

I will continue to pray for you all. No coincidence that I found you and will check in when I know more.

God bless you all!
Patty

[MtPockets]

Hi Patty,
Glad you found us. I hope that you can find the support you need here no matter what is wrong with your husband. Thanks for the prayers, and know we will also be praying for your situation.
God Bless
Capt AL

P. S. A little something for those who need a hug today:

[hopingforthebest]

Dear Capt Al:

Wow! That is actually what I need and it seems alot of you wonderful people are all looking in the right direction for our help. Look Up!!

May God bless you & your loved ones and give you the Peace that surpasses all understanding!

Patty:)

[alicia]

[QUOTE=alicia]Thank you for having me i do not have als but my mom did and she past away on feb 13 2007.I have alot to say about this horrible disease i call it the devil because it just beats you upand theres nothing you can do about it,I will talk to anyone about this disease if you are willing to listen. Thanks for listening.and i do have a lot of questions i would like to ask other people to if they will listen.

[nsmith555]

Hi, I am new here today as well.
I posted a message in the caregivers forum...it looks very probable that my mother has bulbar ALS.
I'm looking forward to gaining as much knowledge, support and suggestions as I can as I help my family deal with this.

[MtPockets]

Welcome to the forum everyone. Jump right in with any questions or comments you have. This is a very friendly site and we are all here to help one another deal with the monster ALS/MND.

If you need specific info you might be able to find it using the search icon above. There is a world of great information and great people here.

God Bless
Capt AL

[guitarman]

I am a brand new member and new to forum commmunicating. Not quite sure how to do this forum and undoubtedly may make mistakes as I learn.
My husband has PBP with an indication of full fledged ALS in the off wings.
I am trying to learn how to help him through all that will unfold. ALS is an individualistic disease I am told.
He is 16 months in, and struggles daily.