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caroline
8th April 2011, 08:25
Hi, this is my first time posting on this forum! My Mum was diagnosed with PBP last July and is now at the stage where she has no speech and swallowing is becoming a big problem, we are currently trying to encourage her to agree to a PEG as she is loosing weight but she is refusing (but that is a different matter). The other big problem we are having is the volume of syliva she is producing and obvioulsy not being able to swallow it, we have printed the information sheet from the MNDA and are trying to work through the options, so far we have tried the natural i.e. fruit juices and the travel sickness patches, neither have worked. We are about to try Kwells (also for travel sickness) and see how that works, but does anyone have any methods that they tried that worked successfully? The GP doesn't seem to be much help here and is tending to write prescriptions for the products that we are asking for rather than suggesting new ones. Any help or suggestions would be gratefully received.

Thanks
Caroline

Carly
8th April 2011, 12:35
Buscopan....My Dad was diagnosed last July but sadly passed away on the 18th March.
In the hospice where he spent his last day they used Buscopan for excessive saliva.
Check up on this please before giving it to your mum, wouldn't want anything to go wrong!
Hope that helps x x x

caroline
8th April 2011, 14:34
Thank you Carly and so sorry to hear about your Dad. We will check it with the GP and hopefully it may do the trick.

Graham
16th April 2011, 19:55
Hi Caroline,

Buscopan is a muscle relaxant and may adversely affect other weak muscles.

Best wishes

Graham

Barbara
18th April 2011, 18:33
Hi Caroline, my mum has been struggling with exessive saliva for 12 months. the best thing your gp can prescribe is glycoporronium. There is also a special non foaming toothpaste which can be prescribed but i cant remember the name of it. i think i found it on the main mnd sight.

best wishes

barbara

luce
2nd May 2011, 22:54
I think i read somewhere that it is colgate non-foaming toothpaste - prescribed

having a few boxes of tissues around can help with excess saliva
all the best
Lucy

Traceygibbo
7th May 2011, 20:18
my husband had a little patch i think it was called a hyocin (spelling sorry ) you can also get it in medicine form also my husband had botox injections injected into his saliva glands via the hospital unfortunatly my husband died on 23rd april .. but this did help him slightly it depends on the form of m.n.d ..as for the toothpaste you can get it from boots its 6.00 but have forgotton the name sorry .
Also graham had a suction machine with him day and night which we got from the medical supplies from the district nurse . dont be afraid to ask

Newcastle Lot
25th May 2011, 15:38
My mother was also diagnosed with PBP last June. She has terrible problems with saliva. She can no longer speak and uses the light writer, pen and paper and a "Boogie Board" to communicate. She had a PEG fitted in February when her weight dropped quickly by 21 lbs so make sure this doesn't happen to your mum as we were warned that it had been done just in the knick of time!
Going back to the saliva problem - she has tried tablets, patches, syrup and jelly - nothing has helped but some made her feel very sick. She is now on an hypnosis trial which seems to be having some affect and she has a suction machine. She has several choking episodes and uses a tongue scrapper to help a bit.
She is also having problems with her dentures - she feels as though she is allergic to them - she is going to the dental hospital to see what they can do to help as she is very upset by this as has a fear now of anything to do with her month. She also uses Dentyl mouthwash which helps a little.
Good luck with your mum

bern47
26th May 2011, 13:40
hi nmy mum has mnd bulbar palsy no speech and mucus and saliva is terrible she has also tried patch and the other medicine especially one for your eyes amtrip?? i think they were bit reluctant about giving her this one as it was to be put under her tongue it was expensive but never worked so mam uses mucodyne twice a day it helps a bit and too keep ur tissues at the ready,choking is very frightening for them but tellin them not to panic but breathe slowly an keeping her head up should help.my mum has no control over her head ,we r lookin into getting a head support

Robyn Copley-Hirst
26th May 2011, 14:57
Welcome to the forum, Berne

I'm glad you've already found the Carer's Area. I hope you find the forum a good place to share your advice and experiences with people. If you ever need any help using the forum just get in touch with myself or one of our moderators.

Robyn

bern47
26th May 2011, 17:27
thanks Robyn ,im trying to upload fotos,

luce
16th December 2011, 01:23
Hi my mum finds the suction machine really good for the excessive salive. it helps her to get some sleep. she uses mucodyne 3x a day and the suction machine when required. the machine can also be useful for getting food out that is stuck and can't be brought up

kind regards
luce

annette
15th January 2012, 16:04
hi. i take 3 amptripline at night and it works. my consultant did this for me.
i have bulbar mnd. i eat all the cream cakes etc and chocolate as much as
i want now. important to keep weight up. annette.

Irene
16th January 2012, 19:48
My husband John takes amitriptyline 2 each morning and wears scoperderm patches last year we had a problem getting the patches and our gp gave us kwells on presciption and they worked better than anything.They did make him a little sleepy at first but after about 3 days he was fine

Rachelg
16th January 2012, 21:36
My husband Mark takes Amitriptyline at night and Glycopyrronium Bromide solution through his PEG during the day. He has tried everything and the Glycop.... is the most effective. He also has 3 monthly botox injections into his saliva glands. Drooling (which was bad - big time) is completely under control. Mucodyne keeps the mouth secretions thin rather than thick and gloopy which caused him choking before his tracheostomy.

MattJ
20th January 2012, 14:24
Mu mum has now started on Glycopyrronium Bromide. I'll let you all know if it sorts out her saliva problem.

Rachelg
20th January 2012, 20:04
Matt - how is your mum taking the Glycopyrronium? Mark has his via PEG - its injection solution diluted. Getting the dose right is important because we once actually dried Mark up too much!!!! Once we got it right it has worked brilliantly. Handy to have a mouth moisteriser (fake saliva spray) available from the dentist just incase mouth gets a little dry - bit of a balancing act.

Alice
20th January 2012, 21:50
Propanthaline seems to work!

miranda
21st January 2012, 12:08
I amalso on glycopyrronium bromide now. It is in oral solution form which I dilute with water. Seems to be working!!!!!!!!!!!!!! I am keeping my fingers crossed because this is the first thing that has worked - I think I have tried all the other alternatives on offer.

Bels
26th January 2012, 21:14
Hi,

My Mum started taking Propanthaline Bromide a week ago. Overnight she noticed that her speech got worse (quite bad anyway) and her walking got slower (again quite bad anyway). We are going to phone the Doc about this tomorrow but wondered if anyone else had experienced anything like this or any problems on Propantheline Bromide?

Bels

davith
24th February 2012, 16:10
Hi caroline, my partner had the same problem. patches made her sick, our doctor put her on Amitrityline hydrochloride tablets, we started at 10mg and worked up to 20mg, which seemed to do the trick, i would recomend your mum has the peg fitted, it does alliviate the distress caused by swallowing, she can still try juice, and ice cream as treats, but it also means that all the drugs can be administered through it. hope this is of some help. we just have to make life as easy and as comfortable for them.

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