Hello and welcome to the forum. Wow 28 years! You must have vast experience re PD! It gives me hope. My husband was diagnosed last summer aged 49 but has probably had PD for a few years.
Apart from saying hello, your question reminded me that back awhile I printed some information off the internet which was put together by a lady who's mother had PD. She wanted to help people with tips and hints re managing the condition without having to trail through loads of info as she had needed to do for her mother. I cant remember who this was unfortunately but could probably find it again with a small amount of searching.
Anyway, sure enough amongst her tips is a paragraph re Drooling so I will copy it out word for word in the hope that it may help your husband and you to find some new ways of managing this problem:
How can you prevent drooling?
People with PD dont have more saliva than people without PD they just swallow less often. As a result of this there ends up being an excess amount of saliva which then often results in drooling.
(there is a bit about Botox injections being approved in USA and to ask doctor if nothing else works..but I read that you have said that isnt an option)
Here are a few suggestions which may help prevent drooling and possibly some embarrassing moments:
.suck on hard candy, lozenges or gum to control excess saliva (if you are not at risk of choking)
.Use a straw when drinking to strengthen the muscles of the lips, mouth and throat
.try to keep your head up and your posture straight because stooping encourages drooling
.swallow first before you talk
.when you're not eating or talking, keep your mouth closed and your lips tight together (people with PD tend to let their jaw drop open which encourages drooling)
.breathe through your nose (~this will help keep your mouth closed which will then help to keep the saliva in your mouth)
.remind yourself to swallow to prevent saliva build up
.you may try rubbing a strong smelling lip balm over your mouth to remind you to swallow
.try putting one or two drops of atropine eye drops (0.5%) under your toungue to reduce the amount of saliva - this works for some people but you should check with your doctor first
that's it....please could I just re-inforce that this is not my advice but just me copying something I read on the internet. I hope you manage to find some useful tips to help your husband.
All the best
I bookmarked this time ago.I will try and find out what has happened.
NeuroHealing Pharmaceuticals initiates Phase II Clinical Trial of NH004 for Sialorrhea Control in Parkinson's Disease Patients
For Immediate Release
NEWTON, Mass./EWORLDWIRE/Feb. 19, 2008 --- NeuroHealing Pharmaceuticals, a private, clinical stage company developing drug treatments for
individuals with neuro-rehabilitation needs, today announced the initiation of a Phase II clinical trial of NH004 for the treatment of sialorrhea (uncontrolled drooling) in Parkinson's disease (PD) patients. The first
patients have been enrolled, and dosing was initiated last week. Subject to recruitment, results are expected to be available by the end of the second quarter of 2008.
The clinical trial is a phase II, double-blind, placebo controlled, dose response, Latin-square crossover study to evaluate the efficacy and safety of NH004 for the treatment of PD patients suffering from sialorrhea. Up to
36 patients will be randomized to receive treatment with three doses of NH004 and placebo. NH004 is an intra-oral muco-adhesive thin film for the control of sialorrhea and has demonstrated promising responses in exploratory studies. This trial is being funded by The Michael J. Fox Foundation for Parkinson's Research.
The trial is being conducted at the FLENI Hospital in Buenos Aires, Argentina. Marcelo Merello, M.D., Ph.D., an internationally recognized Parkinson's disease researcher, is the principal investigator. Dr. Merello
commented, "We are excited about this clinical study of NH004 in patients with sialorrhea. It's important that physicians have new options for the management of sialorrhea."
Daniel Katzman, NeuroHealing's president and a co-investigator in this trial, said, "Initiating this trial is a milestone that recognizes the completion of several significant tasks including film manufacturing and
pre-clinical pharmacology studies." He further added, "These efforts will help bring NH004 closer to the market."
Sialorrhea (drooling or uncontrolled salivation) is a major non-motor complaint in many patients suffering from various neurological impairments including Parkinson's disease (PD), cerebral palsy, ALS, stroke and other
motor disorders. Sialorrhea is often described as the single most disabling social problem for many PD patients. It is a frequent, awkward and embarrassing condition, affecting up to 75 percent of patients with advanced PD. Depending on its degree, drooling can result in social and medical disability, impaired speech, or serious feeding difficulties. Unable to manage oral secretions, affected persons are at an increased risk of aspiration pneumonia, skin maceration, and infection.
NH004 is an intra-oral, slow-dissolving film containing a fast acting anticholinergic agent to control the symptoms of sialorrhea, and the accompanying embarrassment and frustration to patients. The drug is
embedded in a muco-adhesive film that is placed in the mouth and provides a slow, localized delivery of the medication while minimizing systemic exposure to the drug. This drug delivery is designed for effectiveness,
safety and convenience. The film design makes it ideal for unobtrusive use in a social environment. NH004 is designed to provide both supportive care and to improve the quality of life.
About The Michael J. Fox Foundation
The Michael J. Fox Foundation for Parkinson's Research is dedicated to ensuring the development of a cure for Parkinson's disease through an aggressively funded research agenda. To date, the Foundation has funded $115 million in research.
About NeuroHealing Pharmaceuticals
NeuroHealing Pharmaceuticals, Inc. is a clinical stage private company developing therapies to improve the neuro-rehabilitation process and functional outcome for patients who have suffered debilitating injuries to
the central nervous system. Clinical stage programs include:
. NH001 (phase II), a dopaminergic agent to help post traumatic brain injury patients to emerge from a coma, vegetative or minimally consciousness state
. NH004 (phase II), an anticholinergic agent in a convenient intra-orally muco-adhesive dissolving film to help treat motor neuron disease patients who suffer from sialorrhea (drooling)
. NH02D, a novel mechanism compound to accelerate the rehabilitation outcomes of stroke patients who remain with chronic motor and cognitive disabilities
I don't know if this will help with the drooling problem. My husband gets a lot of difficulty with saliva getting stuck at the back of his throat and as his cough reflex is reduced by PD he finds it hard to clear. Our PD nurse suggested pineapple chunks, which can be crushed if necessary. Evidently pineapple contains an enzyme which cuts down saliva production. He had tried this with great success.
Of course, I can only tell you how if has helped us, but if you did decide to try it, I would be very interested to know how you got on.
I read another tip:
Chewing a clove of simply holding a clove in the mouth for several hours can reduce drooling in some people
(I hate cloves, except in bread sauce..but i thought id pass it on!)
All the best
Hope your both well.
Wow 28 years! I bet you and hubby could teach the pro's a thing or two!
My nanna has PD and has this problem, she doesnt speak much on her bad days and this is when he droopling is at it's worst, she tends to hold a tissue and mop it up or we do it for her (to save her dignity best we can) but she gets awful jaw termors and this really doesnt help. We feel her tablet timing is the root cause and when this is spot on she is not to bad really. (although things are progressing)
Sorry i am of so little help....but mopping it up seems our best/ only option....
Some of the other tips are not possible for him, his posture is bad and his neck is fixed so he leans over, and he also has a droop to the side of his mouth so those two things do NOT help! Plus he wears dentures which inevitably do not fit properly due to the excess saliva.
What I need is impossible I think, something that will stop him getting soaking wet but maintain his dignity. He wears an apron to eat, but naturally does not want to wear a bib all day. The only thing he'll do is wear some protection (a teatowel) inside his shirt so he can't feel the wetness against his skin.
It is so good to be able to discuss these matters with those who understand. As hubby has had Parkinson's for 28 years I hope I may be able to give some useful input too.
My mum had a problem with drooling years ago she had liver failure. I have to admit we couldnt find any solutions to stop her drooling.
but because I am a seamstress I mad her something similar to a bib with waterproof backing then soft fabric either side I also made pillow slips ect. I made them so they were quite discreet. maybe you could find someone who could make similar in your area. they are not expensive and as i said you could think of a design that is not to noticeable that can be tucked into cardigan ect. I hope your not offended by my suggestion its just it protected my mums skin a lot
I would be most interested to here how things go with anyone trying the pineapple juice. Pat has found it very helpful.
I found this link to a local NHS leaflet which mentions it.
I heard about Scopaderm patches that you stick behind your ears and which contain hyoscine - a drug primarily used to combat travel sickness but which has a side effect of dry mouth.
I realise the underlying problem is not over-production of saliva but the swallowing reflex - but less saliva also means less need for swallowing and the result is the same - less drooling.
The Scopaderm patches worked great for a while - but then they began causing a red, sore reaction behind his ears.
So we began to try the same drug - hyoscine - in tablet form. Bingo.
The added advantage is that you don't even have to get these prescribed (although I would recommend this both to check up on the pharma side and for cost reasons).
Most travel sickness tablets (Kwells, Joy-Rides) contain hyoscine and taking them has certainly improved my husband's quality of life.
i recommend you tell your medical practitioners we need a tube that goes in a persons nose that sprays in the persons mouth products that lessen saliva when awake and sleeking, liquids like lemon , Drinking ginger tea, sage tea or dark grape juice which reduces saliva production, please advocate for this to be made
spraying products in the mouth that lessen saliva is the only way,
i hope you will
Rather late to this discussion but here goes. KWELLS TRAVEL SICKNESS TABLETS Do not use with Amantidine.!!! Over the counter only, not meant for excess salivation, so ask for them carefully! They dry the mouth. As not approved for excessive saliva, husband takes half a tablet if very bad or just prior to a social situation. Doesn’t cure it entirely
The active ingredient is Hyoscine hydrobromide a medicine that belongs to a group of medicines called anticholinergics or antimuscarinics.
DO NOT USE antimuscarinics. with bradykinesia Could be toxic
Neurologist appointment coming up, we will ask for proper anti saliva medication on prescription