Helping a Relative with Blepharospasm


Posted by Shirley-Arkansas-USA , Mar 22,2001,20:09   Archive
Many times people register and say that they are looking for information for a relative and want to know how to help them. It may be their mom or dad or even a friend.
We're in the best position to tell this person how to help. I'll list a few things and everybody jump in and give some tips and tell things that family members can do to help us.
1. Try to read or know as much about the disorder as you can by contacting the BEBRF and reading the BEBRF Main Pages at the top of the bulletin board by clicking on it. Print the information out.
2. Know that stress, activity, bright lights, noises or a change in routine can all make the symptoms worse.
3. Botox is not a miracle drug and doesn't make everything all better. It helps some people more than others. The injections are scary.
4. Let us talk to you and tell you how we are feeling and what we are afraid of.
5. Know that changes will have to be made.
6. Know that everyone's symptoms are a little different.
7. We may want to stay home and hide but it is good for us to get out. Just be gentle and find something to do with us that we can actually do and enjoy. This will take some thinking through.


OK group-give the families of people with Blepharospasm some ideas of how to help us.

Shirley in AR.




Recommend Current pageAuthor Profile
Replies to this message


Re: Helping a Relative with Blepharospasm

Re : Helping a Relative with Blepharospasm --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Mar 22,2001,20:30 Top of Thread Archive
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




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Helping a Relative with Blepharospasm

Re : Re: Helping a Relative with Blepharospasm --- Sally - in - Idaho
Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 23,2001,11:43 Top of Thread Archive
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.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Helping a Relative with Blepharospasm

Re : Helping a Relative with Blepharospasm --- Shirley-Arkansas-USA
Posted by Mindy , Mar 22,2001,22:21 Top of Thread Archive
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



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Helping a Relative with Blepharospasm

Re : Helping a Relative with Blepharospasm --- Shirley-Arkansas-USA
Posted by Cherie Hanscom , Mar 22,2001,22:31 Top of Thread Archive

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!




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile