My brother.....

[lindasue]

Hi, as you may have guessed from my ID, my name is Linda. My brother Jimmy was diagnosed with ALS yesterday. His doctor said that because his ALS has been a particularly rapid onset "version" of ALS (a few months) that he expects the progression of the disease will be equally as rapid, and he guessed that my brother would only have a few months to live. Jimmy's current status is muscle twitching in his arms & legs, muscle weakness in his arms and legs, slurred speech, fatigue, inability to do "little things" any more due to the muscle atrophy in his right hand and the fact that the least little thing leaves him feeling exhausted. The doctor did all the tests, I believe the one yesterday would be an EMG (electric pulses to the muscles). He told us some of Jimmy's muscles and nerves have died and the others will follow. Anyway, I told my brother that I think the doctor was maybe preparing us for the worst case scenario because I don't think a doctor can actually predict time remaining, can they? Each person is different, some people can go into remission, sometimes it can "stop" completely, sometimes it speeds up and slows down, doesn't it??

In addition to the above questions / ramblings, I would like to know if anyone is familiar with the Neuroscience Center at Barnes Hospital/Washington University versus the Neuromuscular Clinic at St Louis University Health Sciences Center? The latter is a certified ALS clinic, but the former is rated one of the top 7 in the nation (but not ALS certified). Does anyone know if one is better than the other? Does the ALS certification of the clinic mean they are any better than the other one?

My brother has claimed that he's not going down without a fight. I intend to be with him every step of the way. He's never married, never had kids, 53 years old, lives in StLouis, I live in IL. Can he really deteriorate and die in just a few months? Is that possible when he's walking around today, looking fine, just much skinnier and weaker and sounds like he's been drinking??

Thank you all for listening and any responses you may send!!!

[CindyM]

Hi Linda- I am so sorry this is happening to you and Jimmy. I'm glad you found this site, since we have hundreds of PALS and CALS who can offer advice and wisdom. You are right about each case being unique but similar in some ways. The thing that seems to help most PALS, from what I have read, is a good emotional state. Some people claim it extends their lives but in any case, having a positive outlook makes for a better quality of life.

This may not be the time to tell you all this, however. You probably feel like you have been hit by a Mac truck. Write anytime and please remember we are here for you! Cindy

[luv2byte]

My big brother also has ALS. His first symptoms were about 2yrs ago, actual diagnosis was this past fall. He also sounds as if he has been drinking, walks a bit like he has been drinking but overall his legs are strong, he is still working full time and walks all over the place. My brother just turned 50yr old and married a wonderful woman the day after his birthday.

While his symptoms do progress he is doing well. Part of it I think is his love of his wife & his faith.

I just reconnected with my big brother after 15yr estrangment. I cannot imagine life without him again. My life has been so blessed since he is back in it.

One of the things I do for him is pay attention to what he is doing. Such as, how does he open a package of food by himself? Scissors. How can I make that easier? Spring loaded scissors. How does he open pop cans by himself? Barely but with a piece of silverwear or doesn't at all. How can I make that easier? Adaptive aids that are made just for such a task. Zipping his pants? Buy him button up but pull up (so they don't look like "old man" pants) pants & a zipper puller aide. Open Jars? Get him an electric jar/can opener. Putting shoes on? Slip on shoes he has, but I bought him a 30" shoe horn which he loves.

I try to look around and find things that I can get him to make life easier and maintain independance and maintain his pride. I send little packages from the web about once a month. Not everything is expensive I send him, most really is under $15 ea. He comes home from work to find a package on his doorstep and inside are little gifts for him to try out. I figure if something I get him doesn't work for him then he can donate it to his ALS chapter for someone else.

One thing I did was buy a goofy pool water noodle, cut the foam in strips, cut a slit through the center lengthwise and use that to put on the end of picnic plastic wear for when we bbq, on popcicle sticks so he can hold them easier, lots of things. Its the funniest thing but it works for him.

Pay attention to his stuggles, his frustrations and see what you can do to make it better. One thing I do is when my big brother is frustrated by what he can no longer do I remind him of all the things he still can do and does do well. I also ask alot of questions here - everyone here is very helpful and very nice.

I wish you two well. I know how wonderful it is to have a brother and how frustrating the thought is of someday losing him.

Ellie

[Icanmanz]

Hi, as you may have guessed from my ID, my name is Linda. My brother Jimmy was diagnosed with ALS yesterday. His doctor said that because his ALS has been a particularly rapid onset "version" of ALS (a few months) that he expects the progression of the disease will be equally as rapid, and he guessed that my brother would only have a few months to live. Jimmy's current status is muscle twitching in his arms & legs, muscle weakness in his arms and legs, slurred speech, fatigue, inability to do "little things" any more due to the muscle atrophy in his right hand and the fact that the least little thing leaves him feeling exhausted. The doctor did all the tests, I believe the one yesterday would be an EMG (electric pulses to the muscles). He told us some of Jimmy's muscles and nerves have died and the others will follow. Anyway, I told my brother that I think the doctor was maybe preparing us for the worst case scenario because I don't think a doctor can actually predict time remaining, can they? Each person is different, some people can go into remission, sometimes it can "stop" completely, sometimes it speeds up and slows down, doesn't it??

In addition to the above questions / ramblings, I would like to know if anyone is familiar with the Neuroscience Center at Barnes Hospital/Washington University versus the Neuromuscular Clinic at St Louis University Health Sciences Center? The latter is a certified ALS clinic, but the former is rated one of the top 7 in the nation (but not ALS certified). Does anyone know if one is better than the other? Does the ALS certification of the clinic mean they are any better than the other one?

My brother has claimed that he's not going down without a fight. I intend to be with him every step of the way. He's never married, never had kids, 53 years old, lives in StLouis, I live in IL. Can he really deteriorate and die in just a few months? Is that possible when he's walking around today, looking fine, just much skinnier and weaker and sounds like he's been drinking??

Thank you all for listening and any responses you may send!!!


Linda, darling, may God bless you! I just read your comment, and it made me cry. Right now I am having a hard time hitting the keys, because they look blurry from my tears. Bless your brother. Sometimes I wonder, "Dear Lord, why? These are good folks. These are folks that care, they have families, they don't go around shootin' and robbin' people." why this? I will never, ever understand. I am not mad at my Heavenly Father, never have been. My beautiful son took it like a man, bless his soul. The only thing he told me was, "Mom, this is God's plan, so let's trust Him! If He calls me home, so be it. But please don't cry, and don't be sad. I am okay with it." He told me this on numerous ocassions. I kept telling him how I wish I could trade places with him. He knew I meant it. ALS is a very, very horrible disease. It turns you as a loved one inside out, it kills you over, and over,and over! Your brother's condition is almost a carbon copy to my Rudy's. Identical seetheart. When my son was near the end his health took a huge plunge! He started losing weight non stop. Does your brother have a feeding tube? My son's feeding tube was inserted last year, around April. At the end he could not eat any food at all. My poor baby for months his only intake was Ensure. I wanted to die. He lost sooooo much weight. He looked emaciated really bad. I cried in silence every time I saw him. Only people that have never dealt with this horrible disease do not know what we have been through. My son touched a lot of hearts. He had a very beautiful funeral. His farewell party was awesome! I am thinking about goint to visit his grave this week. We have been getting so much rain here alont the coast, it has been raining for 44 days! It's okay, I love rainy weather.
Linda, I am out, sweetheart. I will be praying for your brother, and the family! If you have any questions, feel free, baby! Bye!!

xoxoxo,
Irma

[jimercat]

Linda,

I am so sorry. I just don't believe that a doc can put a time line on one's life with ALS.

I will pray for you, your brother and family.

[trustinggod]

Dear Linda,

I am sorry you have joined "The Club" but happy that you have found this wonderful bunch of supportive friends.

The short answer to your question is yes. It can happen that fast. Not usually, but if you read some of the old posts on this forum you'll find a few such cases.

Your brother is blessed to have such a dedicated and loving sister to walk with him down the very rough road ahead. You will both be in my prayers.

Blessings to you both,
Jeanne

[puzzled36]

Sorry to hear about your brother. I am being worked up at the neuromuscular clinic at Barnes/Wash U. They are listed as certified ALS clinic on the MDA site. Where did your brother go, who did he see? Also, when did his symptoms start?

Gina

[Lorie]

My Brother has ALS to!! I never knew after all we have been through in our lives that something like this can happen. It can, it has, it don't discriminate, as we all know.

My heart goes out to all of you, I know how hard it is. I am a Care Giver for Timothy and I have dedicated myself to Advocating and bringing awareness to this horrible sentence of a disease.


I am going to post this link on a very special person I have the pleasure getting to know, his name is Mark and his wife is Martha. In this news article she speaks of a "Season of Despair" when Mark was DX 5 years ago. He now can only communicate with his eyes. A truly amazing inspirational story. Please Read:

http://www.azcentral.com/health/news/articles/0119als0119.html


I was in that "Season of Despair" after Timothy was DX. I have been there. Its the perfect description of where you are when someone you love gets this DX. I have somehow (by the grace of God) recovered to a degree and I am focusing on Timothy, other PALS and my Family.

Thinking of you,

Lorie

[Lorie]

I told Cindy yesterday, I dedicate atleast 65% of my time. Advocating, Bringing Awareness and Fundraising for this disease. Not to mention the care I help give to Timothyand taking care of my family and dealing with my own disabilities. My Husband and Timothy has said to me: This is my calling!! I will not stop!

You don't have to Thank Me. Its an Honor for me to do this!


You can fight this battle! This guy is down to using his eyes, he has so much faith! I was amazed with him. Truly Inspiring! I always tell Timothy, Faith, The will to live, and the Right Attitude is going to help you live longer. By the way Timothy is also Inspiring, he is a big part in my motivation. But, all of you are! You can do it, I know you can!!!

Timothy told me the other day, I want to be the longest living person with ALS!
Can you Imagine???


I would like to give special Recognition to My Mom Mattie, My three Brother's Ronald,Dale,Neal that give most of the Physical Care Giving to Timothy. In a way they have given him the Gift of Life. This terrible disease has broght our family back together again. Please read Timothy's Inspitational Story:

http://www.als.net/ffc/familyPage.asp?familyID=328

Lorie

[lindasue]

My brother is being referred to Dr. Pestronk at Barnes. We are waiting for them to review his case and call him for an appointment. I try to stay on top of this (at the risk of being labeled a pest), but so far the people at Barnes have been super nice!!! My brothers first symptoms appeared in February. A twitching in his hand between the thumb and index finger. Jimmy didn't think anything about it because "everyone gets twitches". Then it started going up his right arm, the left arm and across his chest. It is just amazing to see, like everything under his skin is short-circuiting. There is CONSTANT movement, but it cannot be felt on the outside. It never stops. Jimmy has a black belt in TaeKwonDo, and a couple of doctors there told him that it could just be Benign Fasciculation Syndrome, since Jimmy had an unusually bad bout of the flu in February. He couldn't keep any food or liquid down for a week. They also told him it could be something worse, but Jimmy latched onto the BFS believing that's what it was. It came to the families attention in May when Jimmy went to visit our Dad. Thats when we insisted he go to the Dr, which he did. So, it would seem that Jimmy's progression has been rapid (February, diagnosed in July). Thats why his neurologist said he expects the future progress to be equally as rapid. Jimmy had a positive attitude when he was hit with this on Monday (5 days ago), but he is already experiencing a drop in his attitude (rightfully so). He said when he wakes up he thinks "I don't feel good, I'm not going to work today", but then he makes himself get up. I told him that was the best thing he could do for himself, at least from everything I've been reading.

I personally don't know how you all deal with this. I've always been considered "the rock" of the family, the person everyone leans on and expects to get things done when everyone else is overcome with grief. Maybe I will get back to that, but this first 5 days has been horrible for me. I'm about as far from being "the rock" as one can get. I love reading all the posts on this website. You can "feel the love" all around. I want to tell my brother about this website, but I'm afraid he'll see my posts and it will bother him when he finds out how much trouble I'm having with this. I have to be a rock for him, and I have to be cheerful and positive with him.

Thanks all for listening, and also for the support!!!
Linda

[lindasue]

Irma, Thank you for sharing your story. I hope my brother remains as steadfast as your son Rudy did in fighting this. Of all the responses that I've read so far, yours touched me the most. You shared your anguish with me, and I appreciate it more than you'll ever know. Please keep in touch.

Linda

[Lorie]

Linda,
I am in the same place that you are. Except at this point Timothy's progression seems to be slow. I am also the "Rock" of my family. I have to make sure everything gets done. down to making sure he gets everything he needs and then some. Concentrate on being there for your Brother in this time of "Despair" and "Need" of Love and Support. At some point I got A "Grip". I had to, to make sure that he is properly cared for. Make sure you get what he needs in each step of his "Journey". if he like's the computer make sure he has what is compatible for his needs. If he like Music, play the music. I believe it is very important to keep them involved with the "Living".

I know exactly where you are, as I am there myself. I will be glad to give you any information I have. We all are in this together.

As far as the Doctor's go, KEEP BEING A PEST! Your concern for your brothers health and well being is the most important issue. I am still on the path of getting Timothy to other Doctors. I went to one Thursday for Test that Studies/Researches Underlying and Neuromuscular diseases. i have convinced him to see Timothy. What better person to Research. DON"T GIVE UP!!!!!

As far as the Doctor giving a time frame for your brother, I think most would agree, I don't think there really is a way to predict how long he has. I sure hope they are wrong. Timothy's MDA/ALS Neuro. back in April said that Timothy was half way. well considering he was DX two years ago, suspected three years ago, had symptoms for seven years before that, all together=10 years. who really knows???? How can they predict? When most of the time its hard for them to DX.

MY DAILY PRESCRIPTION FOR TIMOTHY: HAVE THE FAITH, THE WILL TO LIVE AND THE RIGHT ATTITUDE!

Hang in there, we are with you and your brother!

Lorie:-D

[puzzled36]

Linda, your brother is going to the right place. Dr. Pestronk lost his wife to ALS and his work on this disease is his life. I have been a nurse at Barnes for seven years, am being seen by his number two man, and can assure you they will take good care of your brother. The thing with your brother is, if he was diagnosed by a neuro who is not well versed in ALS there is large room for error. Also, I read somewhere, possibly the wash. u neuro site or under the ALS diagnosing criteria that rapid onset of objective generalized weakness points away from ALS. Good luck to you and your brother, I know what a nightmare your going through.

Gina

[lindasue]

Thank you Gina for your insight. Maybe we'll see each other at Barnes some day???

[lindasue]

Gina,
My brother has an appt with Dr. Al-Lozi this Thursday at 9:15. My sister and I are driving to St Louis to go with Jimmy. We're hoping and praying there'll be a little bit of good news. Just a little. We don't want to be too greedy. :-)

Linda

[CindyM]

I hope your brother gets a bit of good news on Thursday, too, Linda. Cindy

[puzzled36]

Linda, I'll be thinking about you. Dr. Al-Lozi did my first EMG when I was referred by a regular neurologist. I was later assigned to Dr. Lopate. I was told by the technician that he (Alozi)is the one to see if you had something out of the ordinary and doesnt run the typical course. He did my EMG and said you have some signs consistant with MND but your EMG is clean. He thinks I have early onset myasthenia but I'm not sure because the medicine isnt helping and you dont usually have twitching and cramps with MG. Anyway, I wish you and your family all the best - let me know how it goes.

Gina

[JACKIEMAX]

I Have Just Been Reading These Posts About Doctors Telling Als Patients And Families That They Only Have A Few Months To Live. In Some Cases They Are Correct, Only Because Of Rapid Deterioration And Breathing Tests.

My Husband Knew For One Year That He Had Als, But The Drs. Only Dx Him This Past Jan. A Dr. Told Us Recently That He Had Only A Few Months To Live Due To His Breathing Capacity Being 78 And Going Down Down Down. He Had Another One Last Week, And The Technician Told Him It Was Lower.

He Hits Plateaus Wherein He Stays The Same For A Few Weeks, Then All Of A Sudden Something Serious Happens And We See A Deteroration Happening.

The Drs. Don't Always Know Everything, But Whatever They Tell Us Caretakers, Families, And Patients, All We Can Do Is Try And Make Every Minute, Second, Hour, And Day Count.

Love To All. Jackiemax

[hboyajian]

Jackiemax, I agree with you wholeheartedly, make every second count. Yes, doctors do not know for sure, they make educated (hopefully) guesses based on the patients condition and statistics, and sometimes their own hopes for a patient living longer creep in. I know of two occasions, one with ALS and one with cancer, where the doctor overestimated the life time left by more than a year, and it was a shock to the family to have it come down so much sooner. Hopefully for most people, the time estimate is too short and they really will have much longer. A range, like is probably the best a doctor can do, to let a person know their life expectancy could be short, but with the longer time possible to give hope.

[puzzled36]

Linda -

How did your brothers appointment go? I've been thinking about you and hope things went well.

Gina

[lindasue]

Thanks Gina for thinking of us. It went well, all things considering. First off I'd like to say what a wonderful place that clinic is!!! We talked to many people that morning and the attitude of everyone there was "welcome, we're so glad you've found your way to us and we'll take good care of you". it was such a difference from his neurologist appointment before that. And, we all really liked Dr. Al-Lozi. He was so nice, and had a sense of humor too. My brother was scared to death of having another EMG, and I told the doctor I'd like to be zapped, just once, so I could understand Jimmy's fears. Dr Al-Lozi said (with a sinister little smile) "we can arrange that". :-D

Anyway, Dr Al-Lozi talked with my brother and said that he had many of the symptoms of ALS but that he wanted to run his own tests to make sure it wasn't something else. We figure he was basically saying "its ALS but I can't commit to that just yet". When I asked about the Rilutek because Jimmy was told he only had months to live, Dr Al-Lozi said that no one can make a prediction like that because every case, every individual is so very different. He said that he's seen people like my brother whose symptoms came on fast, but they hit a plateau and stayed there for awhile, just as he's seen people who progress slowly at first then suddenly take a nosedive. That right there made us feel better. We recognize that it still could be just months, but at least now we know it might be longer.

Jimmy was measured for a "splint" to sleep with on his right hand because his fingers are curling under. He was given a lung capacity test (101%!!!!!! yay!!!!), and he talked to an MDA person and it turns out some of his costs for this office visit will be picked up under an MDA grant to Washington Univ!!! We all left feeling so much better than we had at the previous neurologist's visit. We feel Jimmy is in really good hands now.

Jimmy is supposed to call Dr Al-Lozi for the test results in 2 weeks. I'll post back then after we hear the results. Thanks to one and all for all the insights and all the support. I've told my brother about this site, told him he has to come and check this site out. Right now I think he's afraid to learn more about ALS, he hasn't researched it at all.

Once again, thank you all so very much!!!!

[puzzled36]

Linda, I'm glad that you and your family were treated well and that you liked Dr. Al-Lozi. I pray that the tests come back showing something else. Your brother is lucky to have you helping him through this horrible nightmare. Keep in touch.

Gina

[Lorie]

We had the Doctor give Tim a Lyme Disease Test today and A Thyroid Test. It Will be next week before we get results. Another step in making sure of the DX. I told the Doc. I couldn't rest with out the Lyme Disease Test. He also has to see a Pulmonary doc. on Friday. This evening they delivered a Nebulizer with Medications. He has been having too much Mucus coming up. And some problems breathing when lying down. He has lost his appetite.

I am scared, with his progress being slow for so long, I am fearing the worst. But hopeing for the "Best". I am not sure how much more my Heart can take. I feel so bad for Tim. "Helpless".

Any Suggestions, Please let me know!


Lorie

[TipaCow]

Linda,

I get SO damned mad at doctors that cause unnecessary grief. They have no knowledge of how long a PALS will survive. As several people have noted, ALS is different for every patient. I pray that Jimmy will plateau and have many years to celebrate his birthdays.

My neurologist told me 3-5 years also at dx, and 11 years later I'm still doing good! I still type with my hands (slowly), shave myself with an electric shaver, and can still swallow food. I know this isn't the norm, but you just never know. My progression has been slow, plateauing for several months at a time, then a gradual drop.

I would encourage Jimmy to quit working soon, and begin doing things he most enjoys. I don't know what kind of work he does, but more than likely he will be forced to give up his employment soon anyway. My doctor gave me excellent advice at the time of my dx. He advised me to enjoy life at it's fullest, which I have. I went on vacations to visit friends and family, took a cruise to Mexico, got busy on my computer downloading music, and spent a LOT of time fishing. LoL

Irma,

I am so sorry for your loss of Rudy.

God Bless you all, Dale

[Lorie]

This is Lorie. All or a sudden we are having to see a Pulmonologinst for Tim tomorrow.
After taking him to the doc. Yesterday, They had emergency equipment delivered for his Lungs. After such a slow progression it seeems we are moving faster now. I dread the Appt. Tomorrow. I am soo sick Guys, I don't know what to do. I have to get a Grasp. I am usually so strong, I am so weak right now. I have to handle everything. I am lost. I am in the middle of working on his Legal Healt Issues. Living Will and Medical Power of Attorney. I have got to finish it. And making Pre-Burial arrangements and ALS Tissue Banking for Research. If anybody want's info on that I can help you. It will save Lives in the Future, that we have discussed.

I would Die for him, if I could. I am so sick, Yall!!!

FPALS,
Lorie.:(

[TipaCow]

This is Lorie. All or a sudden we are having to see a Pulmonologinst for Tim tomorrow.
After taking him to the doc. Yesterday, They had emergency equipment delivered for his Lungs. After such a slow progression it seeems we are moving faster now. I dread the Appt. Tomorrow. I am soo sick Guys, I don't know what to do. I have to get a Grasp. I am usually so strong, I am so weak right now. I have to handle everything. I am lost. I am in the middle of working on his Legal Healt Issues. Living Will and Medical Power of Attorney. I have got to finish it. And making Pre-Burial arrangements and ALS Tissue Banking for Research. If anybody want's info on that I can help you. It will save Lives in the Future, that we have discussed.

I would Die for him, if I could. I am so sick, Yall!!!

FPALS,
Lorie.:(

Lorie, sweetheart, you have got to slow down. You won't be any good to anyone if you get physically ill, especially Timothy. You mentioned in a previous post that Tim's progression was slow. Praise the Lord for that!

Look, the legal health issues and burial arrangements are not necessary now. Tackle these things as you have the time. I can tell by what you type that you are burying yourself by attempting to get everything done at once. You've got to pace yourself woman! lol I know you're doing all of this out of love, but once again you're no good down sick in bed.

Why don't you ask those 3 brothers for some help? Dale

[jimercat]

Tipa,

Nice to see your input. thank you for joining us. we need it.

[Lorie]

Dale, I have all this to do on my on. Unfortunately (no fun inteneded, they do not have the brains to do it). I was born with the Brains in the Family. I have to direct them on everything. I think I Love My Brother soooo much until it just devistates me one step at a time. I Thank you so much for you care and concern. You people mean so much to me.
You are like a paart of my Family, and will continue to be. I will update sometime tomorrow evening!

Not to mention I have my own disabilities! I am here for a Purpose!!!

Thanks to all of you, may God be with us ALL!!!

Lorie

[hboyajian]

Dear Lorie, you who have always been so upbeat, energetic, and caring of other people here need some love and care yourself. I wish I could serve you chicken soup in bed, stroke your forehead, and take all that paperwork and get it all finished for you so you can focus on your own health and loving your brother through all this. Many people are able to live for quite some time with the breathing equipment (bi-pap?), but your brother will need help getting it set up and adjusted. The health care professionals should be able to do this for him. try to let that worry go for a moment. If problems crop up, you will know about them soon enough and maybe you will be feeling better and can deal with it more easily.
Sincerely, Holly
P.S. I wish I had known about tissue banking before my dad passed away. Thank you for bringing that information to the forum. It is something the ALS doctors should tell every patient about so they can make decisions and arrangements beforehand. It seems so obvious, it should have occurred to me, but I was so busy trying to figure out my dad's rapidly advancing medical needs that my brain was on overload at the time.

[Lorie]

Holly,
Thanks you for your sincere kind thoughts. I am so sorry you lost your Dad to this disease. I took Tim to the Lung Doc. this Morning with my brother Ronald's help. His Lungs were not as bad as thought. 54-56%. Which the Doc. said was good for a normal person Tim's age (46) that smokes. They are going to send him to a sleep clinic, he may have sleep apnea. So they will go ahead and set him up with Bi-Pap. He will have it to use when he needs it. Thats Good! I am relieved to some point.

Now here is the bad, (did you dad or does anybody else experience these episodes?). After taking him to the Doc. he was sending us over to the hospital to do a Blood/Oxygen test. We get parked. He asked me for a Cigarette, I told him he would have to wait a minute. I would let him smoke after we got him into the wheelchair on the way to the hospital. (this is no smoking grounds). I didn't tell him that. My brother gets him into the wheelchair, he had started going into a "Rage" Cussing me with everything he had. Right in the parking lot. Saying (in a nice way on here) nobody was going to take away his cigarettes or keep them from him. On and On and On. (I smoke to, not that I am proud of it). All of a sudden something snapped in me. I am so tired of his Rages and how he talks to people especially my Mom. I told Ronald to get his Tim's A__ back in the car, Then the fire on the Cigarette fell on his shirt and was burning. I had to swipe it off, and I jerked the Butt out of his mouth and put it into the ash tray. I was taking him back to Moms. I told him I did not in no way deserve to be talked to like that. I was going to show him just how good he did have it. I break my back for him. So does my Mom and Brothers.(i didn't say that to him). He said HMMMMM. I said HMMMMMM!!! I got back and we got him out and into the house and I left. I told him to go find somebody to take him back for the Test. I didn't care if it was in a hot car or the van he can't step up into. Because I always pamper and take care of him. I had to show him he can't just treat everybody like that and get away with it. Needless to say I jerked a shook all the way home, like I was having a convulsion. I am sorry, but there are limits. If I go down the whole Ship sinks.

When I was at Mom's on Sunday, He asked her, What do you use your head for? A Hat Rack??? I told him and my other brothers then, I will not put up with disrespecting mom. Their dogs get treated better than she does. Then she told me last night on the phone that Wednesday night he Told her she was Stupid and a Idiot. Maybe that had something to do with what I did today. But I have had it. I had to teach him a lesson!!!
I am in no way turning my back on him. But we had feelings and We are Human Too!!!

I told him my Paxil may help me from going into a Depression, but my Nerves was Shot!!

Yes, he does get Counceling once a week through hospice. And he is on Prozac, Valium and we give him Xanax when he goes into a "Rage". I could tell a whole lot more, but I am going to stop here for now.

I hope nobody thinks bad of me, because I am really a very good person!!!

Lorie

[Al]

Nope. Don't think you're bad at all. A person can only take so much bad treatment and they are entitled to snap. Good for you for standing up to him. Maybe he'll realise how good he's got it. Sit down have a cold beer or a wine and relax for a while. You deserve it.
AL.

[Lorie]

I just went a bought Corona Light, Lemon and Lime!!

Lorie:-D

[CindyM]

Hey girl. You go drink down those cool ones and keep your feet up for awhile. You deserve it and we are in your corner! Your friend, Cindy

[TipaCow]

Lorie,

Your brother's flare ups are inexcusable, especially when he disrespects his mother the way you described. Sure, ALS is a crappy deal in life, but it gives no one the right to disregard our loved one's (questionable) feelings.

You know, if Tim acts this way all the time it's time for a wake up call, meaning you need to have a serious discussion with him - preferably in front of his mother and brothers. You have to make it crystal clear that if he can't show you your due respect, and his mother hers, that it's time for him to find someone else to be his slave other than you. And I'd stick to it for as long as it takes for his whiny butt to give in and start being pleasant and respectful instead of a pain in the ass to everyone.

Like Dr. Phil McGraw says, "you teach people how to treat you." If you don't take a stand, it will continue and only worsen in time.

My 2 cents worth. Dale

[sherry0459]

Hey Lorie, My thoughts and prayers are with you. You know deep down how much Tim cares for you, but sometimes as the old saying goes we hurt the ones we love the most. YOU also have to remember that you must love you and take care of you too. Your Mom probably will not stand up to Tim, so you have to stop this now. I know how tender hearted you are but you and the rest of the family deserve the respect that you give him. Also, some persons when they are the situation of a horrible dx will try to push people away by being rude and acting as if they do not care so that their loved ones will not be hurt when they are no longer with us. I am not saying that is right OR that this is what Tim is doing but I have seen it happen. Please take a deep breath and spend a few days away. Your family, husband and children would love to have you to themselves, I am sure. Call your Mom or brother to check on him, but step back. You can not help him and the rest of this forum family if your not taking care of Lorie. I'll email you tomorrow to check on you. Your friend, sherry

[sherry0459]

BY THE WAY HAPPY EARLY BIRTHDAY!!! GET THAT MAN TO TAKE YOU SOMEWHERE TO GET AWAY!!! CELEBRATE LIFE!!!!!!!!!!!!!!!!!!sherry

[CindyM]

When my Doctor said to me "you are a very sick woman" and I came here to learn what he was talking about, I made up my mind right away that I would make amends for any past wrongs and hurts I have caused people, and treat everyone with as much love and respect as I could. If I'm really sick (knock wood I am not) then I want my family to remember me as being pleasant. I've said it before: I might be sick but that does not give me an excuse to be a jerk!

Lorie-Tim is scared and striking out at anyone within reach. Tell him to get some counseling so he can be a PAL in peace and acceptance with his condition. BTW, I hope you are still resting with your feet up!:-D Love, Cindy

[lindasue]

I'm so sorry about your brother. Maybe he needs a new anti-depressant. I'm healthy, and I know that when I'm depressed its easy for me to be a major crab and scream at people. I take anti-depressants (5 years now, mothers death, menopause, married to a man 13yrs younger with 2 irresponsible kids, and now my brothers ALS) as do my 3 sisters. Anti-depressants have really made me better able to cope. I know that you said your brother is on anti-depressants, but maybe he's "built up a resistance" to the one he's on. I had to have my prozac increased a couple of times, and now I'm on another. Point being, I truly believe that you can need a change. I'm so sorry your brother treated you like that. When my youngest daughter was little, she would treat me badly sometimes and I would tell her I hadn't done anything to deserve it and she should go to her room and think about it and not come out until she could apologize. Maybe you should tell your brother that he owes both you and your mom an apology? He's not a little kid, you may never get it. You had every right to yell at him. I hope it sinks in. Good luck!!!

[lindasue]

Jimmy heard from his employer that his insurance is going to cancel him. Jimmy had his ALS symptoms in February. He honestly did not know that his speech was slurred (no one told him, we all thought he'd been drinking) and he thought the twitches were a result of a really BAD bout of flu he had in February (benign fasciculation syndrome). So, he didn't go to the doctor (plus the fact that he's never been to a doctor more than once or twice in his adult life). Then, on June 1 when his family realized the shape that he was in and insisted that he go to the doctor, he said he would go the following week when his insurance was approved (insurance coverage by one of his employers). Jimmy hasn't been notified by the insurance yet, but we believe they are canceling him due to a pre-existing condition. What do we do now? Is anyone else in this situation, ALS with no health insurance? Once again, Jimmy seems to be taking it all in stride, saying "I'll just pay them a little bit at a time, thats all I can do".

Thanks,
Linda

[hboyajian]

Linda, I don't know a lot about insurance, but I don't think they can claim it is a pre-existing condition unless he was previously diagnosed by a doctor. Maybe they can, but it is worth checking into and not going down without a fight. Has your brother registered with the ALS Association and the MDA? These 2 organizations will help with medical bills that insurance will not cover. The ultimate costs may be huge, and you don't want him to be unable to get the equipment he needs to live with a reasonable quality of life. Those organizations will also lend equipment.

[CindyM]

Linda-are you in the States? In the US- ALS is an automatic qualification for Social Security disabiity , which then qualifies your brother for medicaide or medicare. This link may help: http://www.medicarerights.org

Sorry I'm kind of vague on my facts. I keep promising to learn this stuff but never get around to it...anyway try searching the threads above because this topic comes up a lot and your brother shouldn't pay out of pocket unless he decides to purchase eguipment, like a scooter, with the intent of keeping his benefits for a more expensive thing, like a power chair. good luck and let us know how things work out. Cindy

[jimercat]

The MDA will help, as stated above. I think that an employer's ins. may not cover pre-existing conditions under a specified waiting period , but all out cx of policy, I don't know. If he hasn't been diagnosed, then how can they decide?

As to SS and Medicare, if he has a dx of ALS and you have the records from the doc, yes it is automatic approval, but your still have to wait 5/6 months to recieve benefits from the time SS determines you were no longer able to work, i.e. "disabled."

If anyone would like any info on the process for applying, etc for SS/Medicare/Supplemental Ins/Prescription drug coverage, please PM me. I'll be happy to tell you what I have gone thru for my husband.

It's bad enuf to have ALS and then have to deal w/mountains of paperwork to obtain help is really stressful.

Moderators, could we start a section entitled "How to obtain Benefits" or "The Benefit Maze" or "help with Benefits?" this would allow all who need help to right away know what to do and what to do right away to help them with their financial burden due to ALS. I'm sure many on the forum would contibute

[CindyM]

Good idea, CJ. I've emailed David about this but get ready! We will need to start collecting links to help direct folks, since it varies from country to country. The first thing I can think of that will get the ball rolling is a sort of glossary. You know, decoding all those acronyms and agencies. I cold even make it into a PDF document that will be easy to print out. So start your engines, folks. Let's collect the data we will want to add on the new "benefits" section! Cindy