Just some tips please

Mum wrote yesterday that she is having trouble with drool especially in bed. Does anyone have any tips to help her. Mum had pushed her emergency button during the week because she had choked on her saliva, when I mentioned this to the Speech Pathologist she said there are some medications but they usually have other side effects, so not much they can do as it will get worse. Mum did have a drooling problem before she went onto Rilutek, but it seemed to get better, but now obviously the disease has taken over again and the drool is getting worse.

I did ask mums GP about it, and how the speechy said he is the one we should speak to about a PEG. The GP was stunned he was to organise a PEG, and didn't give us any tips on the drooling. He annoys me as he says to us "Oh mum hasnt gotten any worse in the last few months" - Mum has gone from being able to walk independantly with just a cane to now walking very slowly with a walker and needing assistance lifting it up a 5 cm step into the house, all in the last two months!

She also says she is starting to have trouble with wetting herself- I initially asked her if that was due to not getting to the toilet on time - she nodded no and I explained to her MND does not normally affect that area as far as I was aware. On driving home she messaged me saying she will go the the toilet more often to get there on time - so I asked the question again is it because you can't get there in time - she said Yes, and also indicated she gets muddled sometimes (She is noticing the cognitive stuff maybe?). How do you approach possible incontinence pads to a very vain 54 year old who is terribly embarrassed about looking old with this disease.

Thanks
Tracie

Hey Tracie,

For the incontinence - I have no words of wisdom. I hope its not something everyone gets.

For the drooling , my pulmo doc gave me 1% Atropine eye drops. 1 - 4 drops under the tongue up-to 4 times daily. Taste gawd-awful , but they do slow it down.

Hope this helps.
Glen

MND does not normally affect that area

MND does not normally affect that area

Click to expand...

From Urologychannel.com

Urinary control relies on the finely coordinated activities of the smooth muscle tissue of the urethra and bladder, skeletal muscle, voluntary inhibition, and the autonomic nervous system.

Urinary incontinence can result from anatomic, physiologic, or pathologic (disease) factors. Congenital and acquired disorders of muscle innervation (e.g., ALS, spina bifida, multiple sclerosis) eventually cause inadequate urinary storage or control.

My brother now has a cath because his bladder was not releasing urine and was backing up.

Drooling-Tim's Doc. put him om Amatriptaline/Generic for Elavil. Although its an Anti-Depressent in has a side affect of drying up secretions.

This may be helpful to you!

Lorie

Thanks Lorie and Glen, I had gotten my info on the incontinence from the MND Caregivers manual the MND Association gave me, stating that it does not cause bowel etc problems, more that pals cannot get to the toilet. I'm the only one in my family which has read this manual, noone else wants to take a look! My brother was surprised at one or two things he was told by our case manager the other day - I felt like yelling at him if you'd just read the manual - the amount of people who tell me I'm the daughter and it is my responsibility, even the GP says to me I have to be relied upon to look after mum! I don't mind the task, I am just not coping to well with my own depression and three kids under five and then mum is very hard to please these days and is constantly in tears and scared of wheelchair and the thought of Peg etc.

It is very hard to be a caregiver,your family should be thankful that you have taken on the job. Please look after yourself you need support as well. God Bless you.

I had to call my uncle this morning regarding Dr's certificate he needs for mum (They both work for Defence dept), and he told me he weighed Mum on Saturday and she has lost 4 kilos in the week. He weighs her every Saturday when he drops off her meat (My other uncle owns a butcher shop)- yet it was not till today that i happen to call him that he tells me! I had assumed if he noticed anything major he would ring - obviously you should never assume things......

I would work closely with your mum's doctor. There are several different meds that can dry up secretions. My mom took several different ones and ultimately wore some patches that dried up secretions. While unfortunatlely there aren't meds to cure ALS there are many different things that can be prescribed to treat the many symptoms. Be sure to discuss all symptoms with her doctor regularly and be persistent to be sure you are heard and concerns are addressed. God bless you, your mum, and your family!

My husband was diagnosed in 1997. He has been using robinul (generic name glycopyrrolate) for his drooling for about 5 years now without any side effects.

Vicki

Hi Vicki!

How effective is the Robinul?

Thanks!

ps- Welcome to the forum! Looks like you will have lots of info for us! WOW! Since 97! That's great!

Hi CJ and thank you.

He only uses the minimum dosage so still has a small amount of drooling. If going out he will up the dose. Seems to be working nicely.

Vicki

husband diagnosed 11/97