Botox

[SWISS_MISS]

Does anyone have any experience using botox for a stiff jaw.

My wife is now having difficulty in opening her mouth to feed and drink.

Our Parkinsons nurse is recommending it but I am not so sure.

[PUTLAND]

Hi my husband has had botox for several years on his eyes to help them open it has worked very well and a great help. Get more information from your nurse to see who would administer the injections. As it is my husbands eyes we go to a eye specialist. Good luck

[Amilazy]

My wife has had Botox to saliva glands to try and reduce overproduction of saliva.    Only one treatment so far of a half dose, not seen much effect but expecting 2nd application of full dose in May.  

Consultant said he gave Botox to mainly Parkinson's patient where he noted about a 75% success rate but different for other neurological conditions he noted about 40% success rate for saliva reduction with about 40% no effect and rest being effects from complete drying to increased production.  Botox is therefore not a magic bullet can bring relief but also increase symptoms.  Also be aware that the injections are deep and therefore very painful for a few days.

It may be worth considering a PEG if Botox does not work as if she is not eating and drinking easily she will start to lose weight rapidly which is dangerous.

Good luck. Tim

[SWISS_MISS in reply to Amilazy]

Thanks T

[abirke in reply to Amilazy]

That was my thought , Tim.  The PEG may be a good option as Botox is indeed not a magic bullet...I wonder if the jaw muscles can still be used when relaxed by Botox? A question to ask the nurse/dr

AVB

[rwctea]

It helped my mother a lot; she got it for her eyelid-drooling as well. As someone else said on here, the right placement is important, so it's best to have it done by a doctor who has experience with such uses!

[rwctea in reply to rwctea]

Oh and p.s.---it was for movement; I don't think she had it done for cutting down on saliva (though that may have been an ancillary effect). It also takes a few weeks, with the mouth stuff, to reach full effect and I believe the effect is cumulative. The eyelid-dropping help seemed more immediate and it was very dramatic and we wished we'd done it earlier (I found out about that use here!). Best to you!

[SWISS_MISS in reply to rwctea]

Thanks

How often does your mum need the injections and is it painful.

We live in Dorset and I am not sure who would give the injection. Probably a vet.

Thanks

[rwctea in reply to SWISS_MISS]

Hi -- we are in the states...my mom left us last September (at 79; it took a few years to get diagnosed, which happened in about 2011 I think. She did not want a peg. We were lucky to have palliative care toward the end, and also, because she had long-term care insurance, helpers during the last two years). Her neurologist did the injections--he was a specialist in Parkinson's and PSP. I think she had them every three months or so. Wishing you strength and I hope that you can enjoy the time you have with your husband. 

[SWISS_MISS]

Thanks...

[Tjayoo]

The very best PSP consultant in Poole is Dr Luke Massey, try and see him as he would advise best course of action. If you are free to come to the PSP meeting in Werewell near Andover next Friday there is a PSP consultant specialist giving a talk, if you want a free lift there with your wife you are more than welcome to join my wife and I. Tim

[Heady in reply to Tjayoo]

Hi Tim, where is your picture taken?

Lots of love

Heady

[Tjayoo in reply to Heady]

Heady, thanks for your interest. Photo was taken by my son of me looking up to the top of Mont Blanc. We ascended the cable car from Chamonix France to Aiquille du Midi, which is the highest point one can go without doing any physical climbing. Something to put on a bucket list! Regards Tim

[Heady in reply to Tjayoo]

There is a hike around the mountain. S did it some years ago.  Love to be back, up high in the mountains.  Unfortunately at the time, I use to kick and scream, due to vertigo and sheer tiredness!  Probably too old now!

Lots of love

Heady

[SWISS_MISS in reply to Tjayoo]

That is the 6th May.?

I was going to try and get there anyway. My wife has carers each morning so she could not come.

Perhaps I will see you there.

Barrie

[Tjayoo in reply to SWISS_MISS]

Hi Barrie, Yes 6th May at 11.00hrs the speaker is Boyd from University Hospital Southampton, I'll look out for you. Tim