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

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
 
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.
 
Linda -

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

Gina
 
my brothers appointment

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!
 
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
 
Just To Let You Know

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
 
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 diagnosed, 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 diagnosed. 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
 
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Sick

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 said:
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
 
Tipa,

Nice to see your input. thank you for joining us. we need it.
 
Dale/Thank you!

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
 
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.
 
Holly

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
 
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