Does Bulbar ALS always spread?

[Rina]

My auntie was diagnosed in Italy last July 08 with Bulbar ALS. Since then she has found it increasingly difficult to swallow and talk but she can still move around with no problem at all in her arms and legs. Is this unusual or does it sometime just remain in the throat?
Thanks

 

[kepi]

Hello Rina,

My mom was diagnosed with Bulbar ALS in October 2005, she was able to move around on her own for about 2 years or so..... In January of 2008 she used a walker for about 2 months, but her limbs were getting too weak so we had to use a wheelchair to get her around. The last 8 months of her life we had to help her with everything because it was difficult for her to move or lift anything, she passed away on October-18-2008 and was completely bedridden.
Take care,
Debra

 

[BethU]

Hi, Rina ... I don't think that's unusual at all. With slow progression, it might take a couple years before it appears in her limbs. Hopefully, she can remain active and independent for quite a while.

Welcome to the forum.

 

[Rina]

Thank you to both of you for your replies.

 

[Jennifer51]

Hey Rina...I live close to you in Woodford Green. Does your aunt go to King George. I go there to see my diagnosing neuro, although I was diagnosed at Spire Roding, privately. Does your auntie see Carla Bone speach and Sheila for massage, I also see Kulvinider Physio and Julie OT. I was diagnosed bulbar in March 08, but had had symptoms for a couple of months. I can no longer go upstairs without my stair lift, and was just given a wheeled walking frame for indoors...my speech is totally gone. Maybe we could get in touch, share some local information and help. I see a wonderful neuro at Barts, soon to be Basildon I hope, at an mnd clinic and am hoping to get on either the lithium trial or my neuros own one, which he is in the process of setting up, dont know what it is for.

 

[Rina]

Hi Jennifer,
I live in Ilford, but my auntie lives in Italy so it would be some way to come to King George's ;-).
I'll ask my cousin whether she's on any trials although I don't think so.

 

[Jennifer51]

Hi Jennifer,
I live in Ilford, but my auntie lives in Italy so it would be some way to come to King George's ;-).
I'll ask my cousin whether she's on any trials although I don't think so.[/QUOT

Oops sorry for not noticing that. The italians seem to be pretty good with als/mnd. My husband is half italian, we have a home there and my neuro at Barts is Italian, been in england for about 20 years. He is in contact with the doctors in Rome who did the italian lithium study. Hubby can speak italian, and so could I until my speech went.

 

[Tfisher]

Rina,

My mom was diagnosed in July 08 with speech and swallowing problems that had started the year before, she can still get around with a walker and has one drop foot but she can't drive or go out and about without some assitance.

tfisher

 

[AHands]

I met a woman while visiting Los Angeles two weeks ago. She said she had ALS in her tongue. I thought she seemed unaffected except slightly slurred speech, then she showed me her tongue--it was pocked and twitching. She said that she has had this for nine years!

Is it really ALS? Who knows? My neuro says the only way to know for sure requires an autopsy.

halting the disease and recovering IS possible. when you halt it or recover, they just say, "oh. then it wasn't ALS"

 

[patricia1]

I have bulbar 10 years and it only started to spread after 7 years to my limbs

Pat1

 

[rocmg]

I met a woman while visiting Los Angeles two weeks ago. She said she had ALS in her tongue. I thought she seemed unaffected except slightly slurred speech, then she showed me her tongue--it was pocked and twitching. She said that she has had this for nine years!

Is it really ALS? Who knows? My neuro says the only way to know for sure requires an autopsy.

halting the disease and recovering IS possible. when you halt it or recover, they just say, "oh. then it wasn't ALS"

that sounds wonderful. if it is ALS, i hope my mum has a progression that is so slow.

i also saw a little lady in the ALS clinic when i was along with mum the other week. she couldn't speak at all, and had to hold a tissue up to her mouth when she drank (i guess because she had trouble swallowing fully.) other than that, she seemed as fit as a fiddle. she had no difficulty walking or using her arms -- she was able to hold and fold her newspaper and kept pace with her husband as walked out of the hospital.

it is such a weird disease -- which is why from this point on, i am going to try pay less attention to life expectancy stats or averages.

god bless.

 

[BethU]

I bet the lady in the clinic with the tissue to her mouth was keeping the fluids from running down her chin. That's what I have to do, too, as I have no lip seal. If I take liquids in (or solids, too, sometimes), they run right out again. Another trick to keeping liquids in (a speech therapist showed me) is to press hard against the area right below your lower lip. So if I take a sip from a can, I immediately press the edge of the can against that area below the lip until my swallow gets ready to work.

I've got involvement in all four limbs, now (not sure about my right leg; doesn't feel weak, but it has noticeable atrophy) but am still walking, driving and functioning pretty well ... maybe at 75% of original. No speech, though.

 

[Al]

From my observations, if you live long enough, limb will become bulbar and vice versa. The trick is to live long with quality.

AL.