BOTOX INJECTIONS

[Jenny41]

My husband has had PSP for 4 years with excessive saliva problem - has tried lots of medication, nothing worked and the consultant has now organised botox inj. Has anyone had them and could you give details of any side effects as my husband is worried

[carehope]

Have atropibe eye drops used under the tongue or glycoprylate ( spelling? ) been tried yet ?

[easterncedar]

A number of folks here over the years have said they have decent success with botox. Our neurologist advised it, but my guy had a bad fall and the appointment was postponed and we discovered the atropine. She said the risk of adverse effects was minimal, and I did trust her word. Best of luck, Ec

[Hidden]

I don't know about botox, but my guy takes glycopýrrolate 1.2 MLS every 4 hour's, it has made a big difference,he has been on it for a least 6month or more now.

Dee in BC

[carehope]

Sorry about my pecking at letters on the phone. 'ATROPINE IS WHAT I WAS GOING FOR ! HOPE THAT YOU FIND A SOLUTION ASAP

[Jenny41 in reply to carehope]

Thanks carehope, my husband has tried most of the medicines and patches but none made any vast difference, this was one of the symptoms which helped in the diagnosis so he's had it for 4 years. I and he, can't wait for it to be eased

Jenny

[Escada29]

Hi my partner has botox injected at UCLH London it seems to do the trick for a while it kicks in after a few days. It gets injected into his neck glands. The first time he had it done his mouth became very dry which made it hard to swallow food. It has worn off now and he wears a hycosine patch (travel sickness patch). At his next appointment am sure they will pump him with some more . xxx

[Jenny41 in reply to Escada29]

Thanks Escada, the swallowing was what I, and he, am concerned about because he already has a slight problem with this and really don't want it to get worse, but I am encouraging him to go ahead and hope I can cope with it, I've already started liquidizing some foods.

[NewTopsp]

I am new to the site and new to PSP. Its been a little over a year now since my dad was diagnosed & still is unbelievable. He is 78 & was struck so suddenly. He resides in a skilled nursing home as he is to much to care for for at home. I had never even heard of it until he recieved his diagnosis. I wish there was more education and support out there for communities and families.

[enzo501]

Jenny,

My wife has had Botox inj for 2 different symptoms ..The 1st was her turned out foot and ankle and its its constant pulsating....had botox injected between the calf and shin twice...100 units and 200 units (3 months apart ...it had zero effect....she has also had and will continue to have injections in her eye....the eyelid would not open ...30 mins after the injection and for the last 2 months the eye is as normal as you could expect .It is scheduled for our next appt. ...in Aug. ...SIDEBAR....we were recently accepted into a clinical trial at UCSF our first trip will be for 2 days of testing on 7/25 and 26...We live in Denver area ..trials are in San Fran ..travel will be the hard part .I will share anything I can that we learn about this disease .These Neuro people are at the fore-front of this hideous disease. If they can learn any further knowledge about PSP we will have done our job....good luck ..jeff

[Kenjap]

My dad has had PSP for 4 years. I'll tell you life is difficult for my sister and I to take care of him daily. The drooling, huming, eye closed, no communication and wetting is bed and diapers. He takes all these meds that do not get him better and it's frustrating. I thought about doing the Botox injections. However I decided not to do it. My OPINION I feel like it's not right giving him more meds to make my life easier. All meds have some sort of negative side effects. He is taking a lot already as is. Not only that it doesn't work. They got medicine right now that reduces urine. WHY? As much as I am tempted to do that.. I can't give that to him. His muscles are freezing as is. I'm not sure if it's a good idea. Anyway I just wanted to voice my opinion out. I hate this PSP disease. It's MAJORLY f#$+Ed up!, Where did it come from?, Why?!, To all the people with PSP and family members taking care of there loved ones with PSP. Keep your head up! Be strong. It a tough journey. 4th year taking care of my dad. No job, no more car, no health insurance. It's ugly here. Nobody will ever understand the difficulties of this $hit#y disease unless they have been through it. I HATE PSP!

KENJA