Posted by Claire Wolstencroft , May 03,2002,13:46   Archive
Shirley, you mentioned that you had apraxia..I do too..and wondered if you've found anything that helps. All I can do is tape my eyes open for a while and then they stay open of their own accord. I'm sure people think I've been putting it all on!
Also i agree. When I talk my eyes are open, but when someone talks to me they shut! I think that the general opinion is that they do this because when I'm talking I'm forgetting to fake it! If only.....
The other thing tha happend was that when I was in hospital, if I looked down and away from the light my eyes would be open enough to do embroidery..but when a doctor came and we were talking they would shut..again this alladded to their impression that it was hysterical behaviour....
I keep telling myself that it doesn't matter what they thought..I know that it's "not all in my head" but it has affected my self esteem!
I've boosted it today by enrolling on a dinghy sailing course with my boys
Claire in Macclesfield with cuddly kittens

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Re: Apraxia/Talking/Shirley

Re : Apraxia/Talking/Shirley --- Claire Wolstencroft
Posted by Shirley-Arkansas-USA , May 04,2002,10:03 Top of Thread Archive
Hi Claire, yes I have apraxia. It is very difficult to treat. The doctors don't seem to have a lot of treatment options for this particular aspect of BEB. Surgery to remove the excess skin on the upper lid (called a ptosis repair) and surgically shortening the levator muscle (a little muscle with a big job of raising the upper lid). I had these things done when I had my upper myectomy a year ago. There has been some improvement since then. It is still a problem but I rarely have to be led around anymore which was a common occurance before the surgery.
BOTOX will not help Apraxia and usually makes it worse unless you have a doctor that really knows his stuff. Since my surgery, I get about 1/2 as much BOTOX as I did before. I was getting 100 units of BOTOX about every 8 weeks. Now, I have gotten anywhere from 27.5 units to 50 units about every 9 to 10 weeks (I'm on my third doctor since my surgery so we're still working on dosage and sites).

There is a surgery called a Frontalis Sling that is used for severe cases of Apraxia. It uses a type of sling that goes from your levator muscle to your eyebrow and when you raise your eyebrow, your upper lid pops open. Some have a good success with this and others have had this surgery reversed as they had dry eye problems or just didn't like it or were uncomfortable with it. I'm not ready to try that route, yet.

Doctors don't seem to know what medications to prescribe for apraxia. They say that there aren't any. I have found over the three years of having this problem that certain medications do help. For me, Benadryl helps. I have also used the stimulant drug-Adderall and it does seem to help to open the eyes. I was unable to continue to take it as it also raised my blood pressure and pulse rate. I would think that other stimulant drugs would have the same effect. I also, most recently, have added the decongestant, Sudaphed to the Benadryl and Klonopin that I now take. I started it about 2 weeks ago and it does seem to help. I'm sure that Sudaphed's stimulant qualities are what is helping.
One thing that I've noticed is that the drugs stop working as well after a time but with a short holiday from them, they can be restarted and are once again effective.

My eyes also close when people are talking to me and open when I talk.
I also think that the "taping" would help. I am allergic to a lot of adhesives so I can't do this.

Hope this helps a little. Check with your doctor about any of the medications and possible try them first. The Klonopin does nothing to help my apraxia but it does help with the squeezing and BEB.

Shirley in Arkansas with BEB/Apraxia

--modified by Shirley-Arkansas-USA at Sat, May 04, 2002, 10:05:44

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Re: Apraxia/Talking/Shirley

Re : Re: Apraxia/Talking/Shirley --- Shirley-Arkansas-USA
Posted by Claire Wolstencroft , May 04,2002,13:40 Top of Thread Archive
Thanks for your reply. I can tolerate what we call sellotape on my eyes...clear sticky tape, for a while, so I am lucky, and I have discovered "viscotears gel" which seems to lubricate well.
Until I can see no alternatives i don't want to go down the surgery route.I worry that things may end up even worse! I have little trust in Doctors!
Claire in Sunny macclesfield feeling sad because I trod on one of my little kittens and he wasn't happy! (He's O.K. now but used one of his nine lives!)

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Re: Apraxia/Talking/Shirley

Re : Re: Apraxia/Talking/Shirley --- Claire Wolstencroft
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), May 05,2002,07:19 Top of Thread Archive
What kind of kittens do you have? I'm sure they are adorable.

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Re: Apraxia/Talking/Shirley

Re : Re: Apraxia/Talking/Shirley --- Kathy in Atlanta
Posted by Claire Wolstencroft , May 05,2002,11:39 Top of Thread Archive
The kittens are a random mixture of adorable sweetness.....teo dark grey and ine of these very fluffy, the other dark grey with a white bib and paws and long white whiskers! Her Mum was black with the same markings! One of the Dads was grey and white the other dad dark grey!

I have been for a sailing lesson today with my sons...great fun but i am hopeless...my brain doesn't work fast enough...and now I am "seasick" on the land!

The sunlight of the water gave me a very screwed up face....not flattering and not what I wanted with the young hunk of a sailing instuctor! Oh well!


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