BULBAR ALS Questions

[chucky]

Hi there:
A very close family member has recently been diagnosed with Bulbar ALS (http://www.alsforums.com/definitions/bulbar-als.html). Very classic symptoms (swallowing issues, inability to understand her talk, coughing - minor; but thru meals, and incontrollable emotions ...laughing and crying, twitching of nerves in arms). Only 1 diagnosis has been provided - BULBAR ALS after 1 year of searching and she is in complete denial.

A second "out of country doctor" has seen her and is now saying she doesn't have anything close to ALS. Her MRI is clear, no EMG's done, cannot still understand why tongue is very weak, and is treating her with immunoglobulin to boost her immunity. Also, found a small tumor in her brain of which there is nothing to be concerned.

My questions to those who have ALS Bulbar: Some days we understand her and some days we don't. Is that normal?

Also, is weight loss (loss of close to 15-20 pounds) since mid last year normal? I am guessing that its a side affect of not beeing able to swallow.

I pray to God its not ALS but he has given her her "less than 18 mos" speech. Can he be wrong? What's that percentage?

Worried.

Chucky

[slm455]

Hi chucky!

Sorry to hear about your news. But you have come to a great place. It has helped me alot. I have bulbar als symtoms. some times my speech is better than other days. not much but my family can tell. I have'nt been fully diagnosed. I go for my 1st emg thursday. from what I can understand people with bulbar symtoms are not supposed have good and bad days. maybe sometimes we take it slower than others. Best wishes.

Slm.

[chucky]

Hi SLM455:
Clarity - so it is normal to have good and bad days in speech?

Have you lost weight?

Chucky

PS It already sounds like I am in the right place - thank you!

[slm455]

I have lost a few pounds but nothing alarming. I try to keep my calorie intake up. I have not asked anyone else in the forum if they have good or bad days. I just know that I have more bad days then good. I hope this helped some. Hopefully someone else can add to this. Best Wishes
Slm.

[Al]

I don't have bulbar symptoms but have had friends with them. They did have some days when their speech was worse than other days. Weight loss is a general charachteristic of ALS. Usually because of swallowing issues and a general weariness associated with chewing. It becomes a chore to eat and chew food. Chucky: where was the out of country doctor? Can I ask where you and your friend are living? The IGG usually only helps if they think it is a motor neuron disease with lower motor neuron signs only. Without an EMG and nerve conduction study I'd doubt if they could diagnose anything. I think they're guessing. The 18 months for bulbar ALS is usually ? about right but there are people on this forum with bulbar symptoms after 4 or 5 years. Don't give up hope.

[MtPockets]

Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ????. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL

[Meg1]

Your relative's symptoms are classic for bulbar ALS--everything you've told us fits and nothing contraindicates ALS. She needs to be evaluated at an ALS center, though, to confirm the diagnosis. If it's not ALS, ALS experts will be able to point you in the right direction towards an alternative diagnosis.

Just so you'll know, the world is full of unscrupulous people who exist (apparently) for the sole purpose of separating credulous and scared people from their money. I'm guessing you're paying a pretty penny for those "treatments" and they aren't stopping the progression. Right?

[chucky]

Hi everyone!
WOW! amazing responses! My relative believes after coming back from her treatment in Asia that she is going to be cured due to her faith and a number of other miracle-like possibilities.

So, while at that, a local Asian doctor (who does have credentials from Europe) is assessing her. But, so far no mention of muscle/nerve tests. Just MRI. I hope they know what they are talking about - I fear of false hope (which they already have given her). The doctor in the US was very quick to diagnose her after all tests done.; but offered her the option of getting another doc's feedback. FAmily members have all asked her to go to a US-ALS center and get confirmed; and due to out of country doc/family re-assurances and inexpensive secondary diagnosis, she has decided not to.

Right now, the Asian docs claim that her weight loss is apparently due to bad eating habits. They cannot understand what is causing tongue muscle weakness and are happy MRI's came out clean. They have ruled out ALS.

I continue to worry as it doesn't sit well with many of us.....

Chucky

[chucky]

ps to answer another member's question...so far no muscle weakness anywhere else. Just the esophageal throat area. Some muscle/nerve twitching on hands. We are in major cities so care/ALS centers are easily accessible.

So, IGG is sounding not useful here....but may holp boost immunity anyways?

chucky

[John1]

My questions to those who have ALS Bulbar: Some days we understand her and some days we don't. Is that normal?

I pray to God its not ALS but he has given her her "less than 18 mos" speech. Can he be wrong? What's that percentage? ...ChuckyChucky, the bounds of normal in ALS are very broad. 18 months might be a median but the range is much greater. I started with bulbar symptoms and yes I have good days and bad days with my speech. On a good day my speech is near normal; on a bad day people struggle to understand me. Oh, my first symptom was slurred speech 12 years ago.

Her symptoms sound very much like ALS but without an EMG it's only a guess. If she is happy in denial and she is not being robbed by a scam doctor then there is little loss in her not seeking an immediate ALS diagnosis as there is virtually no treatment anyway. I was quite happy in denial for a while. Of course if it is not ALS but is something treatable then waiting could be very detrimental.

[chucky]

Well, thanks everyone. Your impressions are exactly what I feared - but, I will be sure to keep you all posted. Certainly, this is going to take a while since the Asian docs have put a spark in her hope that it is not ALS - but that I also hope symptoms don't rapidly progress at the same given time.

Thanks everyone again.

Chucky

[marlo]

Hi there:
A very close family member has recently been diagnosed with Bulbar ALS. Very classic symptoms (swallowing issues, inability to understand her talk, coughing - minor; but thru meals, and incontrollable emotions ...laughing and crying, twitching of nerves in arms). Only 1 diagnosis has been provided - BULBAR ALS after 1 year of searching and she is in complete denial.

A second "out of country doctor" has seen her and is now saying she doesn't have anything close to ALS. Her MRI is clear, no EMG's done, cannot still understand why tongue is very weak, and is treating her with immunoglobulin to boost her immunity. Also, found a small tumor in her brain of which there is nothing to be concerned.

My questions to those who have ALS Bulbar: Some days we understand her and some days we don't. Is that normal?

Also, is weight loss (loss of close to 15-20 pounds) since mid last year normal? I am guessing that its a side affect of not beeing able to swallow.

I pray to God its not ALS but he has given her her "less than 18 mos" speech. Can he be wrong? What's that percentage?

Worried.

Chucky



Hello Chucky

I to have Bulbar,, and the answer to your question i s " Yes". I use to have mostly bad days with my voice then it got alittle better. Now it is very up and down. I am starting to lose some weight now too.

Sorry you find a need to be here,, but welcome just the same.

Love and Prayers

Marlo

[slm455]

Hello Chucky

I to have Bulbar,, and the answer to your question i s " Yes". I use to have mostly bad days with my voice then it got alittle better. Now it is very up and down. I am starting to lose some weight now too.

Sorry you find a need to be here,, but welcome just the same.

Love and Prayers

Marlo

With your Bulbar symtoms did it effect your speech or just your voice.

best wishes. slm455

[marlo]

Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ????. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL


Hello MTPockets,

I was so glad to read your "Quote",, i feel very much the same as you. I too know the Lord and Pray for all on this forum as well as others to "seek" him while he can still be found. As you said,, we will indeed have to live with our decision for along time.
Keep up the good work for him,, and you will be rewarded someday.

Love and Prayers
Marlo

[marlo]

With your Bulbar symtoms did it effect your speech or just your voice.

best wishes. slm455

Hello,

Yes it effects my speech as well as the tones of my voice. My children laughingly ,, tease that i need to write my own dictionary. So people can figure out what i am saying.

Love and Prayers
marlo

[southern lady]

because Bulbar ALS has left me speechless. Some times nothing comes out, which is probably a good thing. I form sentences in my mind, but they send every one scrambling to bring me a dry erase board or paper & pen, saying "I didn't get that. Write it down." & that gets old. My speech was what led me to nuerologist & dx in March 05,now at the end of July 06, I'm waiting on an aumentative speech device.:

[MtPockets]

I appreciate your comments. I think most of us would like to think we can face anything on our own and handle it well. Boy does ALS's prove that one wrong.

We all need help, emotionally, physically, and spiritually. Whether we will admit it or not.:confused:

Most of all I think we need to feel someone cares and loves us unconditionally.
We all have many questions.... I have found the only REAL answers I have found have come from God and his word.

I pray that God may bless protect and keep all of us as we face this together. We are not alone, God cares.
AL

:cry:

[southern lady]

Dx Mar o5, Slurred speech & concern of family & friends drove me to Neuro. (Who happens to be my nephew) MRI was clear--no sign of any TIA's--amazingly clear for someone my age. Then came EMG's & 1 week later I had my diagnosis. We never saw this one coming! Surely this is some type of cosmic joke. Now speech is gone; using erase boards & sick of having to write everything down. Waiting for a dynavox. Still eating w/o feeding tube, but is slow & sometimes more of a chore than pleasurable experience. Some slippage in my weight. Hands and arms weak & atrophied; now has started on my legs & I use wheelchair some. ALS is marching thru my body like Atila the Hun, & all the faith & prayer in the world hasn't been able to shut him down. A nuero in Denver did put me on med that helps control excessive laughter & crying that goes with this type. I am really addicted to this web site. I depend on you guys more then you could know. Please hang in there. I need your support. Mollye

[Al]

We're here for you and all the rest Mollye. AL.

[Bonnie Scahill]

My Mom has bulbar ALS and it began with slurred speach and weak tongue and trouble swallowing. Her MRI was normal. They did an EMG though and the results were not good. She also had twitching in her muscles. She has had this for 18 months now and cannot speak at all. As you said, some days we could understand her better than others. At night when her muscles tired it seemed harder to understand her. Along with not being able to speak she cannot move her hands or arms anymore. She has very little movement in her legs and feet. She cannot move or stand, but she can still sit. The thing with the bulbar is that it works from top to bottom, so the speech and eating are the first to go. She is also on a feeding tube. She can't take anything by mouth or she will choke. Good luck, I would definitley get the EMG. I hope this is not your case, it is a horrible disease and everyone suffers!!!

[Al]

Hi Bonnie. Welcome to the forum and thanks for sharing. If you need anything ie: info or support let us know. AL.

[grp_believes_in_God]

My Dad has bulbar. In about 12 to 14 months his speech has gone from normal to slurred to downright incomprehensible. Yet we loved one manage to figure him out. Doc says it will get worse (yeah right) Question to all. Does the bulbar patient become complete dumb (unable to speak) ? My dad has lost about 20 pounds in a year (mostly muscle).

[Blackbird_29]

Hi there,
I have PBP and it was a process of elimination. MRI, muscle test, breathing tests, blood tests all normal.
Started with poor speech after dental visit. Bit by bit I was unable to say some words. Now can still eat softish food, meat and veges cut up. Can't eat salad, biscuits and cakes or anything that I can't chew enough to swallow easily or with crumbs that go the wrong way. I can't drink water but milk, tomato juice or thickened juices are good. I think my tongue is almost dead. I take Rilutek. I have coughing /choking fits when things go wrong but when I can get my breath againg all is ok.
I have a talking machine and I use a white board and pen so I can communicate ok.
The rest of me is fine. Aim to travel lots before limbs start to go.
Love to others with PBP and ALS.
Merle (Kiwi from New Zealand):-D

[slkfocus]

Hi:
My symptoms started overnight in Feb of this year. One day i could talk, next slurred. Two weeks later I age a sandwich one day and choked the next. Primary doctor looked at me 3 times and said he saw nothing. My arthritis doctor had ordered blood tests and my CK level was 1595 which he was concerned about. Primary sent me to ENT who put a tube down my throat and said I had a immobile soft palate, when asked how that happened he said "don't know". Saw primary again and he sent me to nuerologist who ran tests like blood and swallowing test. Doctor at hospital said I needed a feeding tube immediately (I still don't). This was in April. Nuero sent me to big Phila hospital.
I also had EMG and brain mri and cervical mri. Mri's came back showing no problems. EmG he said showed concerns of nueron muscular disease.
New doctor at hospital gave me another brain mri with dye and she gave me another emg. She said she was expecting worse than what she read from first emg and the mri showed nothing although MS was ruled out.
Doctor is saying PBP than saying ALS. I am eating better but have lost 60 pounds since February. I am working real hard now on eating at least 2000 calories and protein of at least 90. I am considering feeding tube though. I have learned that I can eat the heavier foods and foods that don't crumble. Drinking I drink alot of shakes mostly sherbert shakes.
My doctor refused to give me any kind of time line. I have not heard of the 18 months for bulbar. I am hoping for at least a year or so before my limbs go. I am able to walk and write and carry things for my job.
Once people are dx how long do you continue working. I want to leave my job while I can still do things and spend quality time with my grandchildren and kids.
Does anybody take vitamins and if so what should I be looking at?
As far as my speech in the beginning I slurred alot but now I can talk clear enough to use the phone to talk to lawyers and doctors. Sometimes at night when tired I get a little slurry but I talk slow and try not to "yell" which seems to help. Every week I find I can eat something I couldn't a week before (like cake, pizza). I usually need to drink after a eat a bite but 2 months ago I would choke on that.
I am so confused by this considering my symptoms hit me fast and hard. I am presuming the dx is because of my emg because everything else is normal. Actually my CK level is down to 600 now. Did anyone else have elavated CK level when dx'd?
Thanks for answering my questions. This site has been great (except for reading the 18 months life span)
Sharon

[Al]

18 months is not the end of the line for everyone. There are people here that have had bulbar ALS or PBP for 4 years or more and while they do not live a life like the next door neighbor they still are functional and I am sure you will hear from them. Don't give up hope yet. AL.

[MtPockets]

I also had a high CK level when dx, mine ran as high as 5000 at one time, now averages about 800 to 1000. I don't worry about it anymore. You asked about vitamins. I have been experimenting on myself with B-12 injections a few times a week to try to help with the fatigue levels. Been about 3 weeks now and seems to help for awhile but then fades away. Doctor told me it might help so thought I'd try it. The burning from the shots bothers me so I think I may discontinue them. I'm waiting a few more days before I decide to see if it takes awhile to get into my system. I also am on Rilutek 2 times a day.
Well, best of luck, just know you are not alone in oyur fight against this terrible disease.
God Bless,
Big AL

[patricia1]

I started in 1999 with slugged speech and no other symptoms until last year now my arms are weak and I quit my job in sept 2005 I was able to work with no problem with energy only speech problems so I am lucky its slow However I think it is starting to speed up in my arms I choke on water and I am careful with combination foods as solid and liquid together no weight loss yet and I still dont know the variance of als I have . Every test is neg except my emg last month was the first to show weakness in my upper arms which I knew without a test, I have been to 5 different neurologist in 7 years and finally Dr jeffrey rothstein told me in 2004 Ill probably have als, Now I go to philly and work with a team of professonals and see them every two months No cure No test No meds for this horrible disease>I know I shouldnt complain because I am still here after 7 years at 60 years old. Has anyone had problems with smells I cant take smells like lemons vicks gasoline mints purfumes it takes my breath away. If anyone has that please reply thanks pat

[Al]

My wife got a new bathroom freshener and I said it smelled like cat urine. It would make me nauseous just to go in the bathroom to wash up. Finally we got rid of them. The dog got sprayed by a skunk and after 2 baths by a groomer and 2 by us he still has a bit of odor to him. When he sits near me the smell gives me a headache. I guess you could say I'm more sensitive to smells.

[MtPockets]

Boy, your just a ton of good luck, huh. Poor old dog gets sprayed and then washed so many times.

Reminds me of an old song down south, " If it weren't for bad luck I'd have no luck at all". The rest is too depressing to sing to you, your such a nice man.

I wonder if we smell as bad to a dog as a dog does to us?

My strange sensation since ALS has been what I crave and like to eat now has changed. I use to love junk food, candy bars, lots of sugar. Now I just lost my cravings for them, weird how this disease affects each of us so differently. I suddenly love oranges, which I didn't before.

P.S. AL how you get that thingy not to come up? </img>, I always have to go to edit to get rid of it when put smiley at bottom????

God Bless
Big AL
:)
</IMG>
</IMG>

[Al]

Hey Big Al. When you are doing your post use the icons at the bottom rather than the smiley's at the side of the page and I think that should fix it. I usually don't use them so am just guessing here. I don't use advanced or Post Reply. I just use the little paper and pen icon at the bottom right side of other peoples posts and then hit post quick reply at the bottom. AL.

[patricia1]

Chucky, the bounds of normal in ALS are very broad. 18 months might be a median but the range is much greater. I started with bulbar symptoms and yes I have good days and bad days with my speech. On a good day my speech is near normal; on a bad day people struggle to understand me. Oh, my first symptom was slurred speech 12 years ago.

Her symptoms sound very much like ALS but without an EMG it's only a guess. If she is happy in denial and she is not being robbed by a scam doctor then there is little loss in her not seeking an immediate ALS diagnosis as there is virtually no treatment anyway. I was quite happy in denial for a while. Of course if it is not ALS but is something treatable then waiting could be very detrimental.
I have slurred speech 7 years and have good and bad days noww I have weakness in mmy arms How about you any other symptoms

[hopealive]

Hello All.
Well My Mom had her appointment at the ALS clinic here in Oregon today. She was told Bulbar ALS- Isolated??? She got the impression that they don't think it will progress past the bulbar area. I didn't know this was possible, any ideas out there about this???
Love to you all-
Holly (hopealive)

[COlisa]

Hi Holly,
My experience has been that the dx of ALS can be: Definite, Probable, Possible, and Suspected ALS.

For example, my husband has been dx with"Progressive Bulbar Palsy", which falls into the category of "Possible ALS", although he also has hyperreflexia in one limb, which may push it to "Probable"? In any case, his neuro prefers to NOT to call it ALS at all, since it is not "Definite". Different neuros seem to handle the terminology differently based on patient, symptoms & progression.

More information at: www.alsa.org/files/cms/Resources/Criteria_for_Diagnosis(3).pdf#search=%22 possible%20probable%20definite%20ALS%22 (http://www.alsa.org/files/cms/Resources/Criteria_for_Diagnosis%283%29.pdf#search =%22possible%20probable%20definite%20ALS %22)

------------------------
"Bulbar ALS - Isolated" is a new one to me (although I am certainly no expert....just somebody's wife :) ) . Maybe you could talk to your mom's neuro and get the full scoop.

Best Regards,
Lisa

[hopealive]

Hi Lisa,

I think that was just a misunderstanding. It is not isolated, just plain old bulbar onset ALS. Thanks for helping me understand.
Thinking of you and your husband. I sure appreciate this forum.
Love,
HOlly

[Al]

Hi Davis06. Could you repost your message without the link to the advertising website. We don't allow advertising on this site. Sorry. I hadn't heard of the new way to do PEGS and that site had no information that I could find on it. They only wanted to sell me books.

[davis06]

Al
Sorry about that I just thought you might of heard of it. They have been on me about a peg as I have been putting it of. I will get back later .

Davis06

[MtPockets]

If anyone has information on pegs on the internet please send me private message as I would like to know more about them. Not interested in buying books! I'm too cheap. I would love to see some pictures of them.
Hi GrampsAL, good to be back to the forum for me.

God Bless
Big AL

[Kellielena]

Al -if you invite me I'll come to your pity party. :) I think at some point you should be allowed to feel crappy for a min-or 2. :)
My sister has ALS and reading some of your threads has helped me so very much. Thank you and I hope your life is moving along as well as it can. I can not even imagine going thru what folks with ALS do just to live "normal" lives. Thank you for the hope.
Kellie.



Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ????. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL

[Al]

http://www.mdausa.org/publications/alscare/caring.htm#nutrition

Hey Big AL This site has a drawing of a peg tube installation. I had another one that had actual pictures but somehow lost it. I'll keep looking. AL.

http://www.oralcancerfoundation.org/dental/tube_feeding.htm
Another one.

[MtPockets]

Thanks AL both sites were very helpful, just what I wanted to see. looks like I'm getting closer to needing this than I thought before after this morning. See quote below:
Another surprise this morning. Woke up at daylight with spasm, charlie horse in right half of tongue?? Never had that before. Massaged it and put moist heat on until it let off a little and then sipped some hot coffee. Feels little better now but having trouble swallowing. Knew it was coming, just not this week, with everything else.

I woke my wife up and could not speak to tell her what was happening, so had to use signals. It feels kind of like my muscle on right back of tongue is dead or numb or dumb, take your pick. Anyone else run into this one?

Well, finally back to semi-normal, if there is any such thing for me. Good mood anyway, not crying at least. I did not know about Cheryl passing on. So sorry to hear about it.

Thanks for all the support and comments, I needed them, just hope I can be there for you when you need me.

I sure am glad I'm not God, I don't have to FIX all these problems that keep creeping up. I don't know how He puts up with us sometimes, guess it's just LOVE.

LOVE forgives a multitude of sins and stupidity.

God Bless
Big AL (From Mississippi)
MtPockets:-D

[zac111]

i to am haveing diffucult swalloing feels like i have to clear my throat alot and when i swallow it feels like a lump there as if i have to swallow hard my emg was clean but the nerve condution was abnormal i told my doc about the swalloing but he rubed me off and said i didnt have als because of no spacticity and normal reflex and all this in less than 2 months just wondering does als move this fast?

[Al]

Not usually zac. So he says no als but did he say what he thought it might be?
AL.

[zac111]

he said he thought it was nerothaphy but said i didnt show any symtoms of it,but the test he said suggesred it.the twithes in my legs are horrible i dont understand why the test did not pick them up.and thet acke really badly but i think the swalloing really bothers me the most al.

[Al]

Best I can say is hang in there man and hope you get some changes that will show up on some test. AL.

[zac111]

thanks al,i go for b-12 bloodwork next week mabey it will show something.

[sherry0459]

Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ????. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL
THANK YOU AL, You have a great way of taking the words right out of my mouth. sherry0459

[sherry0459]

THANK YOU AL. Took the words right out my mouth. sherry0459

[MtPockets]

Sometimes you just got to vent a little right Sherry? Doesn't change anything, but sure makes me feel a little better to let it out. Especially here where others will understand.

God bless
Capt AL
:)

[musicsmiles]

AMEN

Musicsmiles