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

WHAT DON'T THEY UNDERSTAND --PART II

WHAT DON’T THEY GET—PART II ---- Handicap parking spaces...................... Last week my husband and I went out for breakfast to a small diner we've been to many times before. They have two handicap parking spaces in the front separated by a yellow striped walkway that leads to the cut out ramp to get up into the restaurant. Both handicap spots were empty, but a large delivery truck Van was parked on the yellow striped area, making it impossible for me to get my wheelchair out of my Van or open my door, or get my wheelchair up onto the sidewalk and into the restaurant. My husband went into the restaurant and found the truck driver talking to the owner. He asked him to please move his truck. In all fairness the gentleman came out immediately and did move his truck. I made the comment to him that it was very inconsiderate to park there. He looked at me like I was crazy. My husband says that he did not actually park in a handicap spot. He was just trying to make the delivery easier for himself. I don't see that as an excuse. I guess I am over sensitized to this issue. But too many times I have seen a car with handicap plate’s drive up to the supermarket, park in one of he few disabled parking spots, and two or three young able teenagers jump out and literally run into the store. It is obvious that they are driving their parent or grandparents car. This does not give them the right to park in one of those spaces. I know that if I called the police they would probably ticket the offending person, but by the time the police would get there, I am sure that the offending person and car would be gone. The police have better things to do. Am I wrong?

Have things improved for us over the past four years? The answer is absolutely yes they have. My husband and I are 61 years old. We have worked all our lives paid taxes, bought a home and were looking forward to “the Golden Years" of our life. Then, I became disabled. I cannot work, or drive and just when we thought we were making ends meet....the recession hit. Four years ago we were near bankruptcy and afraid of losing our home. We had to use most of our retirement funds just to stay afloat. My husband was unemployed, and without health insurance. I am permanently disabled and use a wheelchair full-time. Today: we have received a home loan modification because of the Obama “Making Homes Affordable program, which made it possible to stay in our home. My husband has a part-time job, and acts as my caregiver the rest of the time. I receive Social Security Disability benefits, and Medicare (These are not ‘Entitlements” these are things I paid into during my 35 years of working). We have been able to find somewhat reasonable, low-cost health insurance for my husband. We look forward to the Healthcare Reforms act becoming permanent and long-term for us and for others in our position. Through a Federally funded State run program I was able to get my bathroom remodeled to make it wheelchair accessible so that I could stay in my home and not have to go into a nursing facility. These types of federal aid have helped us tremendously. I believe in my heart that if it were not for programs we might be on the streets or living under a bridge. Yes. Life is better now.

WHAT DON'T THEY UNDERSTAND!!!

What don't they get? My husband and I went up to Flagstaff for a few days to cool off. We stayed in a lovely hotel called Little America RIGHT IN THE PINE TREES. I asked for a wheelchair accessible room with a roll in shower. I made it very clear when I made the reservation that I could not walk and use a power wheelchair. We got up to Flagstaff and the hotel was lovely. Lots of accessible parking, accessible ramps to get into the hotel, accessible dining room and gift shop. We checked in and went to our room. The room was large with a King size bed. The bathroom was large, however… the accessible shower was a disappointment. There was no fold-down seat, only a small plastic shower bench. When I tried to use it, it was very wobbly and unstable. There was one grab bar on the far side of the shower, which was slippery and not easy to grab hold of. There was no place near the shower to hang a towel and no shelf or area to put soap, shampoo or conditioner. I understand that people who are not in a wheelchair or do not live with someone who uses a wheelchair really don't understand the needs of a person with a disability. However, I feel that they should ask. What an idea! Surely there are people that can go in and test a room to see if it really is accessible. I did okay. We had a delightful time, it was cool and I love the smell of pine trees. Yes we had some rain but after living in the desert that was okay too. I JUST GET SO FRUSTRATED!

WHEELCHAIR ACCESSIBLE ISREAL In March 2012 my husband and I took a long awaited tour to Israel. Only issue was that I use a wheelchair full time. Not a problem. I found a tour company (Israel4all.com) that specializes in tours for people with special needs. Best of all the owner/Operator Eli Meiri knew where all the wheelchair accessible bathrooms were! It was a small group, seven strangers who soon became like family. The tour bus was an oversized van with a lift in the back, individual seats on each side and space in the middle to tie down wheelchairs. We spent 10 incredible days eploring all of Israel; The Jewish sites, the Christian sites and the Roman sites. Our room in Tel Aviv was large and had a very large accessible bathroom. The hotel in Jerusalem was also very user friendly. Friends tried to tell us not to go because of all the political unrest there. However, be assured there are not soldiers with machine guns at ever corner and we NEVER felt threatened in any way. Accessibility varied among the tourist sites we visited, but generally was pretty good. The Israeli government is trying very hard to make things accessible for people with disabilities without destroying the ancient sites they came to see. We found good accessibility at sites such as The Sea of Galilee and Jerusalem, which has an accessible route developed by the Jewish Quarter’s Center for Tourists with Disabilities. At Masada, where Jewish rebels made an epic stand against the Romans nearly 2,000 years ago, we took an accessible cable car to the top of the Fortress and accessible pathways led us around the site as our guide explained the history. It was an incredible sight to see. Traveling with a group of people in wheelchairs was, for me, very empowering. I didn’t have to worry about keeping up with the group or being embarrassed about using special eating utensils. Unlike most standard tours, we usually began our day a little later to give us the extra morning time we needed .Our tour guide, Eli, was sensitive to our needs and flexible enough that if the day was getting too long for us, we could rearrange the schedule to push something off until the next day. It was a trip of a lifetime and something I will never forget. Did I say the food was wonderful!!!!!!