Monday, March 16, 2015

Conference Time!

Hello from Los Angeles. 

Over the weekend I was invited to participate in the GLOBAL SUMMIT ON THE EDUCATION OF INDIVIDUALS WITH DISABILITIES at Loyola Marymount University, where my brother Greg is a professor. 

While I was there I participated on a panel called "Changing our Mindset" with Jane Doyle from the Center for Independent Futures.  People asked questions about what schools can do to help individuals with disabilities. Someone even asked me if sometimes I feel like I live in a different world than they do. I said “yes!”.  Epilepsy has a lot of side effects that you may not experience, and you often end up losing a lot of sleep and the world goes on and on without you.  And then I have to ask a lot of questions about what’s happening. Inconsiderate answers hurt more than being told you are not able to drive! 

I had the opportunity to meet former U.S. Congressman Tony Coelho, one of the primary authors of the Americans with Disabilities Act.

Meeting Tony has helped me realize that it’s not just me who does a lot of struggling. Many people struggle. He made me realize that people not opening up about their struggles often comes from the fear of other people’s reactions. He expressed how he had to create a law so that EVERYONE can work, not just people without a disability.

The experience has made me realize that our society is losing touch with people with disabilities because everyone is on their phones and computers all the time. I often feel left behind, like I am still at step five (where I have been all along), while you are now on step twelve.

Being invited to speak was quite an honor for me and I met lots of wonderful people. I hope I can speak on more panels in the future.

Until next time, don't be too hard on yourself.

Tuesday, December 30, 2014

Family Gatherings

I am going to be seeing both of my brothers this Christmas when my family gets together in sunny California. 

I visited my oldest brother and his family at their house in Colorado this past summer. His two children are very different from my other brother's son, in that they are a few years older, and much more active. 

I am wondering how the commotion of my three young nephews is going to affect me since having my surgery. I am sure they may be curious about my surgery, and I am not sure I will be able to answer their questions. I like speaking in front of groups to tell my life story, but I am not sure how to talk to very young children about it. So I guess I am saying that we need to be careful what we tell our family members, and how we tell them about what is going on in our lives. Everyone has their own doings, and wants, but we can only speak of our own experiences; we can’t speak for everyone. I know that mid-way through you life it becomes harder, because you have more people in your family. You should never be ashamed to ask for help if you need it, that’s one of the things family is about. 

I wish everyone a wonderful holiday season, and a happy new year!

Until next time…


Wednesday, December 3, 2014

Holiday Time

Thanksgiving and Christmas are two big holidays, and sometimes we can get confused with responsibilities. 

One thing is turkey for Thanksgiving; we have the responsibility of cooking the turkey, and giving thanks for all the blessings we have. It is not generally a time for gift giving. 

At Christmas time, we may have turkey again, but it is a time for giving gifts to those we care for. If we see our family often, depending on how far apart we live, if possible, it is important to make plans to be together. Stores are not usually open, so there are fewer excuses not to be together. 

Another thing is, we have to try to make time away from work if possible. Also, it is important to figure out transportation, so we can get to wherever our family members are. It is important to take into account the weather, especially this year, with all of the cold and snow that we have seen already. Some forms of transportation do not run on the holidays, so knowing in advance the form of transportation you need to use, would help you get through the holidays.

Until next time…

Monday, October 27, 2014


 After you’ve had a big surgery, you have to go through what they call recovery. 

It’s not always easy though, because even though you have freedom, you aren’t able to do some of the things you want to. It requires a lot of napping, medication may make you drowsy, and you have to be careful of what you eat, because your body isn’t prepared for this yet. It depends on what the surgery is, for my VNS surgery, it has taken me three weeks to recover, some surgeries take longer. 

During that time, things may seem slower and you sometimes may not feel yourself, because it’s a new challenge. What I found, was keeping myself busy by watching my shows, playing games, and keeping my mind off the recovery, has made the time go a little quicker. 

Now, as I get further along, it’s not a worry as much anymore. I am happier, and I am noticing a difference in my mood. I hope it continues to go successfully, and I am not going to worry about it. Being positive about it is not only what makes you stronger, but also it helps your whole body to recover. If you aren’t dwelling on it so much, it passes much quicker, which is why I am where I am today.

Until next time…

Monday, October 13, 2014

Expressing Experiences

I am currently recuperating from having a Vagus Nerve Stimulator implanted to help me regulate my seizures, and hopefully to decrease the amount of medications I currently take.

The purpose of the stimulator was because we discovered that my medication management was getting out of control. When things are getting out of control, it can be very scary. Sometimes it can be so scary, people tell you not to bring it up, but you need to talk about to get a better understanding.

Often, they may react differently at first, but the more they know, the better off they will be. People sometimes need more reassuring and encouragement to speak up about what is on their minds because surprisingly, even younger people can come up with brilliant ideas; and we need more of that today. Even socializing at home needs more attention, it seems as though everyone is on their phone, no matter whom they are with, or where they are, and they are not talking to one another.

I’ve been lucky that I have a family who notice side effects and will talk to me about it, yet what I’m trying to say, is that more families should be like that because opening up is the best way to deal with it.

Until next time…

Friday, August 29, 2014

“Back to School”

It is once again time for school to begin. 

Parents of children with special needs often have to research schools to find a good fit to meet their child’s needs.   

After finding a school they feel meets their needs, they may have to encourage their child to stay in school, because some may want to give up and drop out. Also, you should ask you child what they want to study, because then it tells you what they want to experience in the world. It will help you with your research in finding a school that offers what they want. 

Keep encouraging them to work at school on a regular basis, and let me them know that the time will come when they will be good at it, and that will help build their confidence. Everyone has their own gifts and strengths, so if you find a school that offers things your child is interested in, they may do better in classes and possibly make more friends, and hopefully find a job doing something they like.

Until next time…

I’d like to start this post by telling you I have Epilepsy.

Hello again,

Last week, I went to a support group for people with Epilepsy, and I learned that not a lot of people tend to know about these monthly meetings, and they are having a hard time getting more people to attend regularly. 

At this meeting, they had a representative from the Epilepsy Foundation of Greater Chicago speak about different programs offered through their foundation. I found it interesting, because I could talk calmly, and not worry about what I said. 

If you, or anyone in your family has Epilepsy, I would encourage you to find a similar support group in your area.   

I brought this up because after years of controlling my seizures pretty well with medications, I have decided to have a Vagus Nerve Stimulator surgically implanted, in hopes that I can reduce the number of medications, and possibly the dosage of some of the ones I am taking. 

If it works, down the road, it may help me save a lot of money, which we all want. We always have to keep in touch with our doctors in case something comes up. Regular visits help them stay on top of your condition.

Until next time…