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lindasue

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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

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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

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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

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lindasue said:
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
 

brooksea

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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

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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

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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

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Linda and other CALS

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

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Thank you, Annmarie

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

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response to Gina's questions...

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

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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

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Linda

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

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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

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

lindasue

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going to Barnes on Thursday

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
 
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