Re: We are on a similar time frame

Posted by Pat Soulia , Aug 18,2001,12:33   Archive
Hi Ann

I enjoyed hearing from you. Yes, I travel 4 1/2 hours one way to Baltimore, Md. from PA. My husband of course does the driving and we make it an overnight trip. We drive to York, PA 3 1/2 hours away, stay overnight and then the next morning go the rest of the way to Baltimore. I do not like my husband to drive 9 hours in one day. The hospital, John Hopkins Hospitalis rated among one of the tops in the country but it is not in a very good neighborhood so I do not like to stay in Baltimore. I go to the Wilmer Eye Institute, one division, as this hospital is so large it must take in a couple of miles. They specialize in so many areas that they have a building for just about every kind of disease there is. If you get the newsletter from the Foundation in Texas you can borrow a tape from the lending library done by Dr. Miller re: blepharospasm. Dr. Miller is a neuro-opthamologist, surgeon, and he also teaches at the John Hopkins Institute. He takes approximately 15 minutes to do the injections but after what I went through the year before with a local doctor I have to say the drive to Baltimore is worth every minute of it.
I have had only 2 treatments from Dr. Miller - the first worked great but the 2nd only lasted about 7 weeks and it started to wear off. I am now going to go every 2 months instead of every 3 and see how that works. I am still on the Klonopin but I do want to stop taking it as it does very little for me except make me lose energy. You cannot stop it immediately you have to gradually reduce the amount you take so I will talk to Dr. Miller about that.
I try to keep a positive attitude and keep telling myself "tough times don't last - tough people do" and sooner or later this will go into remission. So far I have never had a problem where my eyes closed and stayed closed - I just have the blinking and squinting when my eyes go into spasm. It is certainly uncomfortable and annoying but things could be worse. I have difficulty reading and cannot watch TV butI do drive locally - As far as driving I feel like I lost my independence as I do not travel any great distance like I used to. Oh well, this too will come back. God knows, I pray a lot for help for all of us suffering with this condition.
I am anxious to hear from the group who went to the conference. My husband wanted me to go but I have a sister who lives in North Phoenix, AZ which is not too far from Scotsdale but she is visiting in the East right now so I wanted to spend some time with her. Scotsdale is beautiful and a lot to see. Hope those who attended the conference had a rewarding experience and also had time to tour the area.
Will keep you posted on anything new I hear or something if interest comes my way I will pass it on. Have a great weekend.
Thanks again for contacting me.
Pat Soulia in Stroudsburg, PA

--modified by Pat Soulia at Sat, Aug 18, 2001, 12:33:44

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