Best Friend Forever (BFF)

This past July my husband needed to go back home to Boston to visit his mom.  He had not seen his family for over a year, and I had been encouraging him to go. He was very worried about leaving me alone for a week since I cannot walk or drive and I use a wheelchair full-time. He was worried that I would fall or worse.  I really could not go with him since his mom’s home is an older home with many stairs, one non wheelchair accessible bathroom and is generally not wheelchair accessible at all.

 My dear friend Lori lives in California. We live in Phoenix. She has a husband, a home two children and a dog. Yet Lori volunteered to stay with me while Phil was in Boston.

She made the six-hour drive to Phoenix and arrived on a Tuesday afternoon. We had a wonderful week together and there is no way I can ever thank her enough. Not only did we have time to catch up and have some fun together, but she also took care of me, my house and Max, my dog.

I could not slow her down. She insisted on vacuuming my house, changing the sheets on my bed, doing laundry, and taking the dog for a walk. She even made me deviled eggs on her last night here so that I would have something to eat before Phil came home.  When I try to tell her that her company alone was appreciated and she did not need to do all of these things her response was that she would be doing this at home anyway. I could not convince her to slow down.

I have a Van with a wheelchair lift in the back and a passenger seat that comes down so that I can sit next to the driver.. I do not drive. Phil made a manual of how this all works. He made a point of saying that in the heat the lift will sometimes get stuck and you have to jiggle it a little to get it in and out.

Well of course July in Phoenix is extremely hot and this year was one of the hottest on record.  One day we were out and about going to lunch at the Olive Garden and then running a few errands when lo and behold the lift got stuck. I was already seated in the passenger seat. Lori had the wheelchair tied on the lift and halfway into the Van when it stopped working. It would not go up, it would not go down, I could not get out to help her… What were we going to do?  She tried for several minutes but just could not get it working. I even suggested we call the police. Finally hair dripping wet and exhausted she noticed a man and his young son in the parking lot just getting out of their car. She asked them if they could come over and help. They did and between the three of them they got the lift and the wheelchair into the car. We drove directly home and stayed there!  

It was a wonderful week. Phil got to visit with his family and  I got to visit with my best friend. Lori still insists it was no big deal, but it was a very big deal for me, and there are no words to thank her enough.   My wish is that everyone could have a BFF like Lori.

 

A Day at Camp

A Day at Camp 

For years I have been involved with the MDA organization I have written articles for the Quest magazine, and raised money for and participated in the MDA Walks. In 2013 I was asked  to be the MDA Arizona Adult ambassador. I am honored to do so. In this position I have attended many fundraising events. I have spoken to many groups and organizations. I always speak about the MDA summer camp for children. I talk about how it takes $800 a year to send one child to camp. I know that this is important and that children are a very big part of what we do. But I don't think I ever really got it. 

. For me it was always important to let the people know that MDA also helps adults like myself. They have helped me in many ways. They allow me $500 a year for repairs to my power wheelchair. I attend their medical clinic at Barrows neurological Institute. I know they do research which may someday find a cure for some of these diseases. 

This year I was invited up to visit the MDA camp and for the first time I think I really got it! These children go to camp for one week a year. During that time they have the opportunity to play, swim, have fun and just be children. There were about 50 children from the ages of about 6 to 9. We had lunch with them and then watched them perform a short reenactment of Harry Potter.

Later the Tucson fire Department came up, and the games began. They set up several games for the children. Three different stations. The children, some in wheelchairs some not, had the opportunity to play and laugh and have fun as all children do. They even invited me to participate in one of the games. I must admit I felt like a kid again.

 

Before the games we went to a shaded area and a few volunteers brought some small ponies over that the children could pet and hug.  There are many animals at camp and I found out that most of them have some kind of disability.  I think camp is fun for them too.

 

The campground is beautiful nestled in the beautiful wooded area of Payson Arizona. All the counselors are volunteers, most of them young men and women.  Each camper is assigned a dedicated counselor who is with them 24 hours a day to help them with whatever they need, whether it is help dressing or using the bathroom or just being a friend. I also recognized many of the MDA people I have known for years. Their job is to make sure everything goes smoothly, and it does.

 

I am very fortunate to have had this opportunity. Now when I asked people to donate money for MDA, and for the children, it will really come from my heart and my experience at camp. 

They will one day find a cure, of this I am certain. Until then, Let the games begin!

I had planned on taking a wheelchair accessible trip to Israel next year.  I've done it before and it was wonderful.  However,  with all the unrest in that part of the world, Syria, Iran, Iraq, Egypt  and now Turkey,  many people I spoke to did not feel safe  doing this at this time.

The GOOD NEWS,  is that I found a highly recommend company who does Tours to Ireland for people in wheelchairs, walkers, or people who just prefer a smaller group and slower pace.  I spoke with the owner who lives in the US.   I am now trying to organize a tour for next summer (2014).  This 8 day tour  would start in Dublin and visit many wonderful places. Dates are not finalized yet, but I am thinking May or June 2014.

 It would include wheelchair accessible 4 star hotels for those who need things like roll in showers , or regular rooms for those who don't.  (so your family and friends are welcome) .It includes full Irish breakfast each day and 4 dinners plus one dinner/show.  Accessible airport transfers and an accessible van through out with experienced guide.  It also includes baggage handling and all gratuities for hotels and included meals.   Lunch s on your own to shop or visit a Pub (I know where my husband will be!)  The price will be about $3000 - $3300 per person,( AIRFARE NOT INCLUDED).. depending on how many people join us.  8-10 people is an ideal number. 

As I have said before, traveling is something I have always loved to do and plan to continue for as long as I can. I am not a person with a disability, I am a  PERSON, who loves to travel who happens to need a wheelchair to get around. Come join me!! Please contact me at bguzelf@cox.com for more information.

Who Is Bonnie Guzelf?

 

Who is Bonnie Guzelf?

This is a question I have asked myself a lot lately. What inspires me? The person I am today is not the person I was 10 years ago, and probably not the person I will be 10 years from now. But who AM I?

I was diagnosed with a slow progressing form of ALS in 1999. My life and my dreams change in a heartbeat. I was in my early 40’s and I thought that I had the rest of my life to figure these things out. What was I going to do with the rest of my life now?

 

By 2002 I could no longer work, walk or drive. What was I going to do to occupy my time and occupy my brain? When I was young I wanted to be a writer, but life got in the way: work, school, home and family.When I could no longer work I started to write this blog. At first it was mostly to vent my frustration and to share information that I had gained over the years.

 My husband Phil and I always loved to travel. I decided that this was one of the things I was not going to give up, at least not easily. We did some traveling while I was still using a cane or walker. Once I had to use a power chair to get around it became a little more difficult. But it didn't stop me. I didn't give up.

 In March of 2012, I organize a wheelchair accessible to trip to Israel.  A place I have always wanted to visit but after my diagnosis never thought it would be possible.  I found a tour company that specializes in Tours of the Holy land for people with disabilities, adults, children or people that just want a smaller group and a slower pace. It was the trip of a lifetime.  I wrote an article about it which was published in the  MDA Quest Magazine.

This year my husband and I went on a cruise to the Caribbean. Although we got a wheelchair accessible cabin, and the ship was fairly accessible, there were still many issues and difficulties traveling with my wheelchair.

When we returned from the cruise I decided that I wanted to take another trip to Israel. It was so easy so and so nice to be with others who have issues like myself. I did not have to be self-conscious about eating with special utensils or needing more time to get ready in the morning or having to take frequent bathroom breaks. I got back in touch with the tour company from last year and I am now in the process of organizing another tour to Israel in May of 2014.  He is also  putting together a tour in October of 2013 called “In the Footsteps of Jesus” .  My motto has always been “Don't take no for an answer.”

I began to get more involved with MDA.  I got involved in some fund raising events and participated in the MDA annual telethon. I wrote a blog about remodeling my home to make it more wheelchair accessible for me. The MDA quest magazine published that article. Suddenly I was a writer, an author. I had a voice and a purpose.

I began to get to know the people who work for MDA. This year they asked me if I would be the 2013 MDA/ALS Adult ambassador for Arizona. I am honored to do so.  As ambassador I have attended many fundraising and informational events. Just recently I was part of the 2013 Muscle Walk in Phoenix Arizona. They asked me why I do the walk.  I think it is to bring awareness to the fact that there all over 40 different types of muscle diseases covered under the MDA umbrella. Most people associate MDA with the children. And of course  that is great. However, people don't realize that MDA serves the adult community also. MDA provides me with support and the opportunity to help others. It has given me the purpose I have been looking for. One day they will find a cure. Of that I am certain.

Don't get me wrong, I am not saying that all my days are filled with joy and sunshine. I have many good days, but I have my bad days too.  When that happens I don't fight it, I allow myself to grieve, for that is what it is. I may have lost the lifestyle I once had, but I gained a whole new meaning to my life. 

Why I walk.

I just finished the MDA Muscle Walk Fund Raiser.  They asked me to give a short speech on “Why I walk”.  Here it is.

I received my diagnosis in 1999. I was told at the time there was no cure and no treatment;  that it would get worse, never get better, and I would eventually end up in a wheelchair.  I am one of the lucky ones, the progression of my disease has been slow. Now in 2013 I can no longer work, walk, or drive, and I am in a power wheelchair full-time. Is it easy? No. But I do it because I have to.  I am very lucky to have a husband who has stepped up to become my caregiver.

 I do believe that attitude is everything. I try to keep that good attitude, and mostly I succeed. That's not to say that I never have my moments because I do. There are days that I just want to sit in a corner and cry. But I don't let that go on for very long. I keep myself active and in touch.   That is one reason I become involved with MDA. It brings me purpose and the feeling that I'm doing something useful.

 Why do I walk?   Or in my case roll?   I think it is to bring awareness to the community. I am told that there are over 40 different kinds of muscular dystrophy. MDA has no federal or government-funded. All of their funding comes from individual donations and fund   raising like the upcoming muscle walk. While other organization such as the breast cancer organization gets lots of publicity and everybody knows about it, MDA is primarily associated with the Telethon and children. Not many people are aware that MDA serves the adult community also.   MDA has helped me in so many ways. They provide up to $500 a year toward repairs to my wheelchair. They help fund the MDA clinic at St. Joseph's in Phoenix. And I go there once a year to see my neurologist. The money that they raise also goes to fund research, so that someday there will be a cure or a treatment. Perhaps not in my lifetime, but for others who come after me

I am still me

 

I belonged to a book club for many years. When it became too difficult for me to get around in my wheelchair and in and out of other people’s homes, I decided to drop out of the club. I still keep in touch with some of the members.

 

I had an interesting encounter last week that really made me think. One of the women who was in our book club for many years, an engineer at Motorola, was diagnosed with early onset Alzheimer's disease. It had come to the point where her husband had no choice but to have her admitted into a facility that could care for her.

 

Some of the ladies in the book club decided to go visit her and asked if I would like to come along. I said yes. When we got to the facility and found her room, there she was, 80 pounds sitting on the bed with a blank stare. She did not know who we were or why we were there. We had brought cookies and milk and we sat at the table and tried to make conversation. But there was no recognition. I suddenly began to cry.  How sad.

As we left to go home and my friends were trying to get me and my wheelchair into my Van, my friend turned to me and said “at least you are still you”. And then it dawned on me, how lucky I really was. True I can't walk, I can't work, I can’t drive and I need help with so many things. But inside I'm still me. I can talk to friends on the phone. I can read books. I can play on the Internet. I can write this blog.  I can laugh, I can cry, I can feel... I'm still me.

Every day I try to remind myself how lucky I really am. I have a roof over my head, a warm bed to sleep in. I have food in the refrigerator, a husband who loves me, family and friends. And most importantly I AM STILL ME.

Bonnie’s Excellent Adventure 

As most of you know by now I use a power wheelchair full-time. I can no longer walk, drive, or do very much on my own. This year I was honored to be asked by the MDA  to be their 2013 MDA Ambassador. I was told that this would involve speaking engagements fundraisers and interviews. I was also told that I would have advance notice of these events so that I could arrange transportation… Meaning  that my husband was free and available to drive me  to the event. So much for good  intentions.

Last week I received a request to speak at a MDA function on a day that my husband was not available . I e-mailed a friend who has helped me on previous occasions to see if she could help out, but sadly she was also busy. 

I decided not to let this slow me down. I looked up the bus schedule. I found that there was a bus route that would take me directly to my destination. All I have to do was drive my wheelchair 1/2 mile to the bus stop, cross a main street and there I was. Reverse the action  and I could go home. I found out that the cost for a person with a disability it 85 cents in each direction.  It was in day time, and not very far from my house. I could do this. 

What I didn't count on was that it was going to be one of the coldest days of the year in Phoenix. But I bundled up, had the exact change in my hand and went out into the world. 

The bus came as scheduled, and the bus driver lowered an automatic ramp for me to be able to get onto the bus. He then tied down my wheelchair and off we went.  I arrived on time, and it was a fun event.

 

I think this experience has empowered me and  given me so much more confidence and independence