Hi Nancy,
I will try to answer your questions. I think my score was about a 6, and yes, it is total paralysis. I think they call it flaccid paralysis. The other kind would be synkinesis (spelling?), where you have movement but need training in cooridinating the movement.
The ANA has a facial paralysis booklet with exercises which help with facial posture, and these can be done soon, you don't have to wait for movement. I remember them being mostly about getting the nonparalyzed side to relax more, so the face is less torked up looking.
When I was in physical therapy, probably a year or more after AN, it focused a lot on mirror work, practicing trying to move the paralyzed side, while carefully watching, so you would stop as soon as the other side took over. I would not recommend doing this without training/supervision. Since you are still new, and there is hope that movement will return, the best bet is probably patience. Also getting the ANA booklet to help improve facial posture, to make the most you can of getting through this time of paralysis.
I had an eyelid spring put in a couple years ago, by Dr. Levine in Los Angeles. He is affiliated with the House clinic. I heard him talk at a support group and also read his article in an ANA newsletter, then I began harrassing my insurance company to go out of network for this. That was after my gold weight had failed.
Before the eyelid spring, I was using Celluvisc eyedrops frequently throughout the day, and a Lacrilube ointment at bedtime. The Celluvisc is the heaviest eyedrop available. I used the single use vials, which do not have preservatives. This is recommended for frequent and long term use, so the preservatives won't iritate your eye worse. You will have to get used to having your vision somewhat impaired, since the Celluvisc is heavy and does tend to build up. But the trade off is that it will help protect your cornea from damage. Hopefully, you are being monitored by an opthalmologist, to "keep an eye" on your cornea.
After getting the eyelid spring, I use the Celluvisc at bedtime, instead of an ointment. During the day, I now use Tears Naturale Free, which is much lighter than the Celluvisc.
Oh, I just re-read your post, that you are already using lubricant during the day. One of the things that really helped, prior to the eyelid spring, was using a contact lens to protect my eye. This lens was also mentioned in the ANA newletter article by Dr. Levine. It is one that can be left in for a month at a time by regular users, and I think was changed every couple weeks in my situation. It you can't find the article, let me know and I will try to see if it is somewhere in my files. At the time, my opthalmologist refused to consider the contact lens, and gave me all the "reasons" why it wouldn't work for me. I brought in the ANA article, and finally he did prescribe it. I think quite a lot of ANA folks were using that method.
Another recommendation for the eye was a moisture chamber. Look in the eyecare forum on this listserve and see if anyone mentions a distributor. At the time, I could not find one to purchase, and was covering my eye at night with saran wrap, using a hyp allergenic tape from the first aid department, to hold it in place.
During the day, I sometimes used a black eye patch, also availbable at the drugstores. For a time, when it was really bad, I was putting an optical bandaid on instead. These are found at the drugstore with the eye supplies or with the bandaids. I think they are made for people getting over surgeries, but it also helped keep the air out of my eye.
Luckily I did not have the troubles you had with eating. I am glad you are no longer biting your lip when eating. That must have hurt. I don't really remember the metallic taste. The worst trouble I had with chewing was that the food was landing between my cheek and my gums, and not getting chewed or swallowed. Had to manually pull it out and toss it (sorry to be gross!). But that cleared up with time.
My understanding is that even if the paralysis continues long term, there is quite a bit of improvement that happens with time, in the first year or year and a half. What encourages me to this day is an ANA friend in Australia who continues to improve, with exercise, and her improvement did not really start until after about five years.
I love food too, and sympathize with you if you are still not able to enjoy food. Maybe serve up something you really love, and just slowly and very carefully enjoy and relish it! Enjoy each moment of tasting it! Hmhh, how about some nice ice cream? Think I will go fix dinner now. Let me know if you have any more questions, or need more details about any of these suggestions.
