Re: Helping a Relative with Blepharospasm
Don't coddle them or treat them like a handicapped person. Be there to give a hand when needed and definitely be supportive, but encourage them to find ways to work around the symptoms and still have quality life.NEVER make fun of them. They realize that they are doing odd thinks like blinking, scrunching up their face, squeezing their eyes, pulling at their eyelids trying to get them open, stumbling when the eyes close, lots of different things. They are already shy about going out in public with these quirks, so don't make it more difficult. Pave the way for them with others now and then by explaining a little bit about the disease and letting people know why your relative/friend is doing these odd things. You can help promote public awareness by doing so and it will make your relative feel that you care. Sally in North Idaho
Re: Helping a Relative with Blepharospasm
Take a look at your own fear, and be careful it is not expressed in anger. I was the primary breadwinner in our family,and my husband had a lot of fear in terms of being able to manage financially, being available when I needed him (I can no longer drive), and taking over many of the things in our marriage that had been delegated to me, like paying bills, doing the taxes, etc. He also feared not having medical insurance, which I had as a benefit through my employer. My children feared that I would need in home care, would have to sell the house as I could no longer maintain it, etc. These fears were never expressed to me. Instead, those fears were expressed in frustration and anger at the changes they saw in me, and their inability to make things better. We had to sit down and openly discuss everything. When they understood how BEB would or would not affect me, they relaxed and could become more more supportive in a real sense.
Re: Helping a Relative with Blepharospasm
Understand that these symptoms are not in their head, they are very
real. And they did not do anything that caused this disorder.
Don't be suprised why the symptoms happen sometimes and not other times.
We don't know why they happen at home, yet at the doctor's we're fine.
Try to understand this is a loss. Along with this comes a loss of self-esteem. Help them and they will in time overcome these feelings.
Understand why they cry, and offer your shoulder.
Mindy
Re: Helping a Relative with Blepharospasm
I first found this BB about a year ago when searching the internet for information on Blepharospasm. As I have said before, my mother (age 56)has this disease. She has since been diagnosed also with Meige. Thanks to the BB I was able to find all sorts of information for her. She was having trouble with her doctor at the time. He kept telling her there was nothing more he could do for her. I made copies of everything I could find on Blepharospasm. My mother could not believe everything I found. I even made copies of some of the letters off of the BB. She could not understand how I found this information and her doctor seemed clueless. Needless to say, her next trip to the doctor, she went armed with all the information! She told her doctor she wasn't leaving until he read the information and did something else to help her. He increased her botox injections and she has been having better results. So I would tell anyone looking for help, to read as many of the posts on this board as you can. Click on every link you can find about Blepharospasm, make copies to take to the doctors. Tell your family member not to give up, there is some hope out there!
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