does any of you....

[john.rt]

does any of you has run into such situation,afrind of min was diagnosed with bulbar onset ALS 6 months ago , it started with his speech ,still his arms feet are ok,usually when he speak it is slurred but some times he speaks quit normally which made him not to believe the Diagnosis was made to him and he asked his Neurologist, he said it is Fluctuation in the activity of nerve, but still he think its not als ,has any of you has run into such case ,if any had this before I would be blessed to know, thanks guys

 

[Marjorie R. Wilcox]

Hi John...I really can't answer your question, as here in my home, we aren't dealing with bulbar onset.... But I thought I would just generalize a bit to let you know that there is always hope it isn't ALS. And we need to get other opinions and assurances.... and there needs to be time to see how things progress... or if they even do progress.

With an ALS diagnosis you need to make your plans, take advantage of all you still can do, take that vacation you never did, tell people how much you love them, and continue in your life as usual..... realizing that you will have to learn to cope with whatever comes.

You didn't say how old this friend is, but after 40 0r 50 we never know what a day will bring anyway. We all have to take this one step at a time. Learning what to expect, knowing that there are similarities and yet differences in each person's journey.

Encourage this friend not to give up hope. Despair doesn't help, but adds to the stress. A good attitude adds to the quality of life for you and all those around you. And remember we are here for you or your friend to talk to if you need us. This is a great place to be as long as you realize there are times to search and read, and times not to.

I hope for you and yours, a road with few or no bumps in it! Marjorie (and Rick)

 

[kmadw]

Thanks Marjorie for this precious advice

 

[kylisa]

If your friend hasn't got a second opinion, he needs to. If he has, and he has a definite diagnosis, then he will have to come to acceptance in his own way and time. It is really hard to watch our loved ones and/or friends dealing with this diagnosis. My mother's first symptom was a dropfoot. She went for months believing she had just damaged a nerve in her calf. Only after she started having issues with her voice was she willing to seek out whatever else might be wrong. Her demeanor has really been above and beyond what I consider normal but, she does have days when she has to break down and cry. I don't know for sure when she finally truly accepted her diagnosis. The one thing I do know for sure is that this disease doesn't wait for acceptance to come.
Encourage your friend to do anything and everything possible (within reason) to fulfill his goals and wishes before he finds himself unable to do them. Also, encourage him to take advantage of any and all tips and reputable treatments his doctor or ALS chapter give him. This disease takes no prisoners....his attitude and your support will make all the difference in the quality of life he has from now on.

 

[john.rt]

Thank you Marjorie for quick reply, the friend is a 44y old, if any member has had this before I would be blessed to know

 

[john.rt]

Thanks kylisa

 

[Jennifer51]

John.rt I started with bulbar, and I got 3 opinions to check it out, all agreed. As for progression, for about 6 months I did not notice much progression, and everyone I saw kept saying how well I was doing, but the last 6 months have seen a lot of deterioration in my whole body. Speech has gone, legs almost gone and arms have started to go. If your friend gets one or more confirmed diagnosis, just be thankfull for every day that you seem not to progress. It is surely a blessing. I am waiting and hoping to plateau soon.

 

[john.rt]

Yes Jennifer I hope he doesn't get to plateau but his case is so strange because one day you can understand him and every body saw him kept saying how well he was doing, the other day you can hardly understand him, as far as I know als Symptoms steady doesn't com and go

 

[brooksea]

john.rt,

Has your friend been evaluated by an ALS/MDA Clinic?

My husband has Bulbar/Limb onset and even his family has mostly been in denial about his diagnosis, until recently. He was diagnosed 09/06.

The tongue is a huge muscle. The more fatigued with bulbar, the less understandable the speech. If very rested you could understand my husband perfectly after about the first 1 1/2 years from diagnosed.

My husband now has very atrophied arms and hands and shoulders. Speech is very hard to understand. We are going on year 3 since symptoms.

I hope your friend doesn't have ALS, but if he does, like others have stated, he needs to keep a positive attitude! You are a good friend for trying to find out about this disease for him!

 

[john.rt]

I appreciate it jimercat, yes he been evaluated by ALS clinic, and they diagnosed he had ALS but he can't confess that he had ALS because the situation I told you in first post

 

[brooksea]

Give him time. The reality will eventually set in. Hopefully he can keep a positive attitude! (you can help him with that )

 

[danjay]

John.rt - I have bulbar onset that started with swallowing issues nine years ago now. What happens for me is that I have good days and bad days, even good times of day, but over time on average the progression is downhill. This is why it is important to take every day for what it is. You just can't tell what the long haul is like from how today compares with yesterday. This disease just doesn't let you get comfortable with it. Hopefully your friends progression is slow and he will have time to come to grips with what is happening. A positive attitude and good supportive friends make it bearable and there are many tools to help, like the marvelous folks on this forum. The very best to you.
Dan

 

[john.rt]

yes jimercat i think thats what will happen eventually ,thanks danjay i wish very best to all members of this forum forum

 

[John1]

does any of you has run into such situation,afrind of min was diagnosed with bulbar onset ALS 6 months ago , it started with his speech ,still his arms feet are ok,usually when he speak it is slurred but some times he speaks quit normally which made him not to believe the Diagnosis...

Hi John,

Your friend's progression to date sounds just like mine. I started with just a touch of speech difficulty. It progressed very slowly over the next few years to involve swallowing but still no limb involvement. Some days my speech was quite slurred and other times it was nearly normal. Oddly that pattern has continued to this day. Now I can't walk and have poor motor control with my hands but my speech is still understable and I still eat normally although I take extra precautions not to choke while swallowing.

 

[patricia1]

does any of you has run into such situation,afrind of min was diagnosed with bulbar onset ALS 6 months ago , it started with his speech ,still his arms feet are ok,usually when he speak it is slurred but some times he speaks quit normally which made him not to believe the Diagnosis was made to him and he asked his Neurologist, he said it is Fluctuation in the activity of nerve, but still he think its not als ,has any of you has run into such case ,if any had this before I would be blessed to know, thanks guys

I had slurred speech with no other symptoms and normal emgs for 5 years I and my family had trouble belieing it too.
BUT it then went to my limbs.Its a waiting game.
has he had a spinal tap?

pat