Bulbar Palsy

[mel]

Hi. I am a new member - I just joined yesterday. I am so glad that this site exists, because I feel so lost and alone with this disease. My mother was diagnosed with bulbar palsy and I am trying to find others that also have this or know people with this. ALthough there is an ALS chapter listed in her town in Ontario, it no longer seems to exist. So, I am trying to find people my mom can meet or email to help her through this because she feels so alone and afraid.
Thank you.

 

[Lisa126]

Hi Mel,
I'm really glad you wrote on this forum. My mom was diagnosed with the Bulbar form of ALS (well they have been telling us it is PLS but I'm still not sure what the difference would be for the Bulbar form). I have barley heard of anyone with the Bulbar form.

Maybe we can share stories and experiences. I know my family feels quite lost as there is just so little information out there on this disease and especially on the Bulbar form.

Take care,

Lisa

 

[mel]

RE: BULBAR PALSY

Dear Lisa:

Thank you for your response. How long has your mother been diagnosed with Bulbar? How is her speech? My mother's speech is horrible because she can't move her tongue, except to stick it straight out of her mouth. SHe is now having problems eating because she can't push the food towards her throat. Does this sound similar? Is your mother taking rizule? I am going to start my mother on a combo of drugs I think, under a doctors care (if I can find one to agree). I just want to stop the deterioration of her tongue muscles so she can continue eating. Perhaps we can help each other by sharing info and helpful hints etc.

I live in the US, so this is equally difficult on me not being near her. Are you in Vancouver?

All the best, and lets pray for a cure.
Mel

 

[Lisa126]

Hi Mel
My mom began showing signs about a year ago. She was slurring her speech- we thought it was stress. She quickly began the long road of testing. We received the official diagnosis around December. At the time her speech and eating were fine- noticeably different but not that bad. Now her speech is getting harder and harder to understand. She has good days and bad days and the time of day makes a difference. She still eats real food (and is determined to do that for as long as possible). However it is no longer things like steak & chicken. She eats pasta noodles, fish, potatoes and casserole type foods that do not require a lot of chewing. She really has to slow down when doing this- sometimes it causes her to start choking but she is getting better at managing that. She also has trouble working her tongue- but we were also told that there are many other muscles that enable us to eat and talk. These are all being affected.

She is on rizuel and is also on a trial drug study. She has been on that for about 2 months but has not seen any noticeable changes. What combo are you going to start your mom on? My mom also takes Creatine, Vitamin E and CoQ10. May I ask how old your mom is? Do you have MS or ALS in the family? How long has your mom been showing signs? Does you mom have any problems with her legs? Arms, etc. My mom has absolutely nothing wrong with any other part of her body.
I am in Vancouver. Our family is very optimistic for a cure. It is what will get us through all this. I am determined to fight this with everything I have. I am constantly doing research one this disease. Being informed and aware of what is out there is our best weapon. I think we can really help each other through this.
Take care,
Lisa

 

[leeshaven]

bulbar palsy

I am new to the forum. I stubbled across it this am. My Mother was diagonsed in March 03. She does does not have ALS. It seems to be stroke related. We have tried 2 different treatments with no results. At that time her speech was severerly slurred. She is completely non verbal now. What sounds she can make are weak and nonsense. She can write but nothing is in correct structure or spelled correctly, mostly descriptive words. She eats maybe a cup of food a day. Her balance is poor. She fell in July along with major gi bleed and broke an ankle. We have recovered from that, but it make a large impact on her well being. She fell again Sun am and lay in the tub 2 hours before her husband found her. I am her primary care giver, her husband doesn't know which end is up. I teach second grade and have taken a leave to care for her. Does anyone have any insight as to what is to come? There is so little info available. When we visit the doc I find that I give the info. So glad I found this forum.

 

[Linda]

Hi! my brother died of als 17 yrs. ago. now my cousins husband has it! she said it is bulbar? i have never heard of it! how does it differ from regular als? what drugs are available in canada? i heard of creatine...is it available? also riluzole but am told it is not approved. any info would be helpful. thanks, linda

 

[Al]

Hi linda. nice to see tHat yoou found us but sorry tHat you Have to be Here. riluzole or rilutek is tHe only drug being produced now tHat slows tHe progression of als. suposedly it only slows tHe outcome by about 3 to 18 montHs depending on wHicH study you read. some of us Here take it and some don't because of side effects and otHer reasons. it is about $660 for a montHs supply in ontario. i believe it is fda approved as well and Have read on otHer forums tHat is around a tHousand dollars a montH in tHe us. good to Have a drug plan.
bulbar als usually affects tHe speaking and swallowing functions first. it is generally tHe worst type of tHe types. limb onset usually progresses more slowly. tHere is mucH more information on tHe Home page site and tHe cdnpals.ca site. Hope tHis Helps and good luck. creatin is a substance usualy used by body builders to build muscle wHen tHey work out. some of us take it in tHe Hopes of maintaining tHe muscle we still Have left. it is available in HealtH food stores.

 

[Jan]

Name is jan: this is my first time joining this site. i have bulbar palsy and have been dealing with it for 3 years. als has taken my voice and eatting skill away and a drool alot. i have try different medications but so far it just thicken the slavia. i go to johns hopkins and do try the trials and medication that is offered me. i keep my hope high as long as i know there are these wonderful people trying to help us all get better. sometime i feel i fail them when they try something new. i have a feeding tube and that is working out well. i have had the tube about 1 year. i do get a stomach ache at time and that is upsetting. but i'm lucky i can still take care of myself. my hushand is an angel to me. i feel sorry for him..i will continue to enjoy the live i have until the end. i'm not sure if this is correct to type of this page. if you hear of a good medication that will slow down all this salvia let me know. thank you

hi. i am a new member - i just joined yesterday. i am so glad that this site exists, because i feel so lost and alone with this disease. my mother was diagnosed with bulbar palsy and i am trying to find others that also have this or know people with this. although there is an als chapter listed in her town in ontario, it no longer seems to exist. so, i am trying to find people my mom can meet or email to help her through this because she feels so alone and afraid.
thank you.

 

[TBear]

Hi jan:
you can come Here any time you like... tHere are some medications tHat Help witH saliva. many als patients Here take a muscle relaxant called baclofen wHicH Has a tendency to dry your moutH out as well as Help witH fesiculations and spasms.
in addition, tHere is an over-tHe-counter motion sickness patcH tHat we used tHat Helped. it's name is transderm-v and is a scopalomine derivative. if you decide tHat you'd like to try tHis out, you sHould cHeck witH wHoever is Handling your als care to ensure tHat tHere is no contra indication witH meds tHat you are currently on. good luck

cHeers
t

 

[Al]

Hi jan. i use amitriptylene to control saliva. it was originally an antidepressant in HigHer doses 100mg etc. one of tHe side effects tHat tHey found was dry moutH. i started on 25 mg and use 10mg now and it works pretty well. Hope tHis Helps. good luck.

 

[TBear]

... sorry, al is correct its amitryptylene not baclofen to control the dry mouth. i had a brain fart... but we did use the transderm v

thanks al!

 

[Lisa325]

My father has the bulbar palsy forM of als. it has been about two years since he first got diagnosed. now he has a peg to help hiM with eating and a suction Machine to such out think Mucus. i believe it Might be stroke related cuz he suffered a series of Minor strokes before he began to show syMptoMs of bulbar palsy. he now uses scopolaMine patch everyday to control excessive saliva. i wonder if anyone is using scopopaMine or elavil(aMinotriptyline) too? are they save to be used everyday for an extended period of tiMe? is there any surgical solutions which can perManently decrease the production of saliva?thank you.

 

[Al]

Hi lisa. welcome to our group. i use tHe elavil but not tHe scopaline.i started on 25mg but we cut it back to 10 wHen i got too dry. tHere are some surgical and radiation tHerapeis tHat do dry up your saliva ducts but tHen you Have none. pretty radical interventions. Have you discussed tHis witH tHe neurologist at your als clinic? tHey may be able to come up witH a combination tHat works better. not trying to be smart or anytHing but otHer tHan unpleasant side effects sucH as nausea or dizzies or sometHing tHat will affect my day to day living i don't worry mucH about safety of tHe drugs. quality of life is important to me and if drugs Help me along tHe way i don't worry about tHe end result. after all life is sHortened by tHis miserable disease anyway so try to maintain it as mucH as you can.
some of tHe otHers Here go tHe natural route and take no drugs otHer tHan glyconutrients and Herbs etc. once again individual cHoice. best to talk to His doctors.

 

[Lisa325]

Thank you so much al! my father had that surgery with dr. huang. i'm not very sure if it really worked. some reports showed that there's a strong correlation between strokes and bulbar palsy. i'll come back to visit this forum often.

 

[Al]

i haven't noticed too many people jumping up and down saying the chinese stem cell works. some of the people notice some diference at first but become strangely silent after a few months. i wonder if his technique really works. i think stem cells are the way to go but his methodology is still unproven. there is a firefighter in castlerock colorado that had it a couple of months ago. at first there were postings on his website every few days but i looked a week or so ago and nothing had been posted for a month. wonder why? not sure about the strokes and bulbar palsey but i have heard about strokes after dr. huangs surgery.