A little discomfort and joy!

Jon’s second semester at college has been rewarding and frustrating.  While Jon is on campus, things are a little easier.  Jon has a power chair that is stored on campus and he can navigate independently.  Jon doesn’t have a power chair yet permanently.   He can still walk and get in and out of a regular car, with a little help.  However, getting power chair of his own and an accessible van is extremely time consuming, especially if going through the state for any kind of monetary grant.   It seems to take months and months to get anything approved.  Because of this I always feel bad that Jon needs to rely on either me or his Dad to drive and pick him up.  My inner monologue usually is “I wish we had the power wheel chair and the van already; I could just throw the keys to one of his friends and say have fun!”  “What 18 year old wants to have his parents around all the time?”

Friday nights are usually late nights for Jon, he likes to stay at school and hang out with his friends and watch the basketball game.  Therefore they are late nights for me and my husband. A few weeks ago he came home early, and asked if he could attend the Nazareth Commuters Association outing.  “Mom, would you mind taking me?”   In my head I’m thinking: “Really, Jon you have to ask? Like I’m really going to say no?”  I answer out loud, “Of Course, Jon, what time and where am I going?”    Jon replied, “Great, Thanks Mom! I haven’t been in the commuters lounge for a couple of weeks, they seemed glad to see me and they said they had an extra ticket.  I told them that I would probably meet them at the bowling alley, but I needed to check first.”  I said, “Well, you better text back a let them know that you will be there.”  After a series of text messages it was decided that Jon would meet them at the bowling alley around 9:15pm. The group planned on meeting at the college and carpooling. I said “Jon, are you sure you don’t want to ride with your friends?” Jon’s reply “No Mom, it’s OK it’s just easier for me to meet them.”

As Jon was getting ready for his night out, I asked Jon do you want the manual wheelchair.  Of course he said no.   I was worried, again my inner monologue “What if he falls? What if he gets hurt, blah, blah, blah?”  However, since Jon is 18 he should know when he needs assistance or not.  So I didn’t voice my worry out loud.  We got to the bowling alley.  Some of his friends were waiting.  I had to laugh when a very tall muscular guy approached the group and said “Hey, Jon, dude, where’s the rest of you?”  Jon laughed and said “Well, one’s at school and the other is at home.”   “Are you cool with it?”  The guy said “Yeah, sure!”  Jon turned to me and said “Bye, Mom, I love you.”    That was my queue to leave and wait for his call for me to pick him up.   He called little after midnight to be picked up.    When I got there, a smaller group of his friends were waiting with him.    They drove together, but didn’t want to leave Jon there alone.  

I asked Jon how is night was during our ride home.  He said it was good.  The bowling alley had a shoot system so he could bowl without having to lift and throw the ball.  One of his friends put the ball on the machine and Jon rolled it down the ramp.  “I had fun! It made it easier for me to bowl.”   Just as I got out of the car to help him get seated, I heard the group laughing really loud, as if someone told a joke.  In my head I’m thinking I hope Jon isn’t the brunt of the joke.    I asked Jon about the laughing I heard.  He made me laugh when he told me about one incident that happened while they were waiting for me to arrive.  “Mom, there was this group of girls that arrived in a stretch limo, they were all drinking and smoking.” “One of the girls walked up to my group of friends and thought we were all really young looking, and asked how old we all were”.  She said “OMG, you all are soooo young looking, how old are you?”  The four people Jon was with answered with “22, 21, 20, 19.”  The girl looked and Jon and said, “How old are you?”  “Jon, said, I’m 18, yeah, I know I look about 13.”  The girl said “OMG, You are so adorable, can I give you hug?”  Jon didn’t answer right away, he was uncomfortable. The girl said “Oh Am I making you uncomfortable? Well, OK we need to make up a secret hand shake or something.”  “You are just too cute not to!”  Jon told me that the girl smelled of cigarette smoke and alcohol and he was taking a few steps back as she was invading his space.   One of Jon’s female friends looked at the girl making the advance and said “Back off, he’s my boy!”   Jon said, “Thank goodness for Kailey.” “I don’t think I would have gotten away from that drunken girl without her.”   He and l laughed about that all the way home. 

As Jon comes into his own, I need to accept that he is no longer my little boy.  He is maturing into a smart and thoughtful young man despite my worry and discomfort. I have to agree with Arnold Bennett who once said “Any change, even a change for the better, is always accompanied by drawbacks and discomforts.”

Advocacy is what we can do from home too!

My family has made advocacy part of our End Duchenne agenda for many years.  My daughter Kat, Jon, and I have always tried to attend the advocacy conference.  This year Kat and I will attend, but Jon’s college studies will prevent him from attending.  Biology, Analytical Chemistry and English are taking up his free time. Jon really wants to make sure he doesn’t miss any of these classes or miss any assignments.

Even though Jon won’t be able to take the time off from his college course load to attend the conference; he plans on getting involved by participating in the packet drop off campaign.  This is a very easy and effective way anyone can participate from home. Visit http://www.parentprojectmd.org/getactive and check out option #2 to make your voice heard from home.

This year more than ever we need everyone’s voice!

Jon was featured as the February Voice of Duchenne.   Please take a moment to meet Jon.

Jon and his sister Kat

Advocacy is what we dare to imagine!

Having sons with Duchenne forces us into advocating for services, equipment and optimal health care.   In reality, whether we are getting services for our son at school, dealing with insurance companies and doctor’s in trying to get the best care, or meeting with staff and members of congress we are advocating.  In 2000 when Parent Project Muscular Dystrophy first organized their advocacy efforts in Washington DC, my family felt it was important to meet with our members of congress. By the time the MD Care act was authorized in 2001, we had gained the full support of our representative and both Senators.

Parent Project Muscular Dystrophy has organized the Duchenne community’s voice to help leverage over $450 million into muscular dystrophy research, with over $200 million of that for Duchenne-specific research. Our collective efforts have also helped to establish standards of care in Duchenne for the first time in history.

After 11 years of advocating in DC, my family still feels that is extremely important to educate members of congress on Duchenne.  When I first traveled to Washington to meet with the Health Legislative aides in my representatives and senators offices I was a full time working Mom in my 40s.  I had trouble saying some of the terms that were vital in explaining how important NIH support is to a rare disease like Duchenne.  I was really nervous! Our training session was given by young smart 20 to 30 year olds.   It was during our training session on Sunday when I realized that being versed in the scientific terms and coming off as a Washington expert really wasn’t my role.  My role was to educate my representatives on Duchenne and how it affected my family.  It was important make sure that these offices knew that this issue was important to someone who lived and voted in their district.  I thought “I can do this! It’s just coming up with a brief elevator speech about my son and how Duchenne affects my family.”  The other thing that made me feel a little more comfortable would be that each meeting would be with other advocates from my state as well.  The group of advocates in each meeting would be able to help each other out.

Through the years the representation has changed for my congressional district with almost every election.  Therefore it has been extremely important to make sure that that PPMD’s agenda has been maintained by building relationships with both my congressional representative and their aides in Washington.  I have found that I have been successful with a lot of persistence and a little bit of honey.   My experience has been to follow up to my meetings in Washington with hand written and email thank you notes to the people I met with during the advocacy conference.   Even if a meeting did not go as planned, you can build a lasting relationship by letting the representative know that their staff was helpful and attentive. Periodic updates of PPMD’s agenda and how our sons are doing also help build the relationship with the Legislative Aides and our representatives in Washington.

To quote the late Senator Paul Wellstone who was the one of the original Duchenne champions in Washington: "Politics is not predictions and politics is not observations. Politics is what we do, politics is what we create, by what we work for, by what we hope for and what we dare to imagine."   PPMD imagines a world without Duchenne. One of the ways you can help to End Duchenne is to participate in PPMD’s advocacy efforts in Washington. PPMD of course would love to have a person from each state attend the conference.  But if you can’t attend, PPMD makes it very easy to participate in a variety of ways.  Please visit http://www.parentprojectmd.org/getactive to help achieve a world without Duchenne.

Destiny, Life, Karma, Whatever

Earlier this month, I traveled to the New York City marathon to cheer on my friend and co-worker Ludovic Raymond.  Ludovic ran the New York City marathon in honor of my son Jonathan. There were three distinct events during this trip that indicated to me that Karma, destiny, a higher power, or whatever may exist.  

The first event occurred during dinner on Saturday night. I was introduced to Ludovic’s wife.   She teaches at the University of Pennsylvania.  She asked me if I knew any Duchenne guys attending the University of Pennsylvania. I said yes I did.  I relayed the story of how I met this young man at one of the Parent Project Muscular Dystrophy Annual conferences.  He was attending the conference with his parents.  He had his iPod on. As I walked by him I recognized a rock song. I said; “Hey I know that song, its Def Leppard.” He looked at me like I was crazy, that someone my age would know the name of the song and the name of band.  His Mom is about my age, she said “I can’t believe you listen to that music!”  Laughing I said: Don’t let my looks fool you, deep down I’m a rock and roller at heart.” One item on my bucket list is to get a tattoo; I just need to figure out what it should be.”  I said “I’m sure our sons would enjoy meeting each other and would have a lot in common.  My son’s favorite band is AC/DC.  This year at the Parent Project Muscular Dystrophy Conference in Baltimore Jon met this young man and his brother and enjoyed getting away from me for a while.  Ludovic’s wife laughed at my story and then said, I think I have this student in the class I’m teaching.  We thought that it was an interesting coincidence that she was teaching this student and that her husband was running the ING NYC Marathon in honor of a guy with Duchenne.

The second event occurred as the Run for Our Sons cheering section waited to cheer all the Run for our Sons runners as they passed. There were 34 this year.  The wife of Parent Project Muscular Dystrophy’s Board Chairman, Stefanie Killian, told me a story of meeting a family affected by Duchenne while she was teaching kindergarten.  She met this family many years before her own son Sam would be diagnosed with Duchenne. Recently, while in the checkout line of their local Target, Stefanie recognized the clerk as the sister of the kindergarten student that Stefanie taught many years ago.  Stefanie related her personal story about Sam and her family to checkout clerk.  Sadly, the clerk told Stefanie that her brother had passed away and that her family never met another Duchenne family.  Stefanie felt that this family came into her life to help her cope with Sam’s diagnosis, and for her to provide some support to help this family heal.

The third event occurred as I was waiting in the security line at JFK airport to catch my flight home to Rochester. A TSA agent asked me if a passenger could step ahead of me. I said yes, the women he was helping looked very frazzled and stressed out. I over heard her saying to the TSA agent that she couldn’t find her boarding pass or her ID. All she really wanted to do was fly home.   As she took her jacket off, she found her boarding pass and id in the inside pocket. To her great relief she was able to go through security without a hitch.  As we started pushing our belongings on the belt to go through the x-ray machine, I noticed that she was stiff and limping a little.  I asked if she ran the marathon, she said yes.  She asked if I ran the marathon.  I said no, but I was in NYC to cheer a friend on, who ran it in under 3 and half hours. I asked her how she did, she looked at me embarrassed and said that she hit the wall and couldn’t complete it.  She was running in honor of her cousin’s son who has Duchenne.  I said my son has Duchenne too and that was why my friend was running. She and her running partner raised $6,000 for Parent Project Muscular Dystrophy. My friend and I raised almost $3500.   I thought that was great that they raised that much for the cause. I told her that it was ok, that she didn’t complete the race, she raised money for a good cause and she did her best.  As we continue to chat, she told me, that her cousin was really having a difficult time adjusting to the diagnosis. I gave her my contact information to pass along to her cousin. The woman who was frazzled in the security line, went off to her gate feeling that her cutting in front of me in the line was due to a greater destiny for both of us. 

I have to agree with Steve Jobs, the co-founder of Apple Computers, who said “You can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something - your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.”    

Having a son with Duchenne is not easy. There are many times where I have wondered why me. However, I have always felt that it was destiny, karma, a higher power,  that has brought the people and the knowledge I needed to help me cope and provide my son with the attitude that he can accomplish his goals.  I am truly thankful for the inspiration and courage that my son brings me every day in seeing how he navigates life despite having Duchenne.  

Learning to sail his ship

Ever since Jonathan was diagnosed with Duchenne, I’ve often wondered and reflected on what his life would be like.  I’m always surprised and impressed with his can do attitude.

As we looked at colleges and careers, Jon made the decision to live at home on his own.   I was worried that he was making his choices based on what his Dad and I thought.  When we discussed living away from home:  I said: “Jon you can live away from home if you want, we will just need to hire a personal assistant to help you get ready in the morning and at night.”   Jon said, “Yeah I know Mom, I’m not sure if I’m really comfortable with that option.”  I said “OK; think about it for a little while and let me know”.  One night Jon announced that his college applications would focus on colleges within commuting distance.  

During high school he had a close group of friends and enjoyed his high school years.  Some of his close friends went away to school. I wondered how he would make the transition into the college setting.  Would Jon make friends?  Would he be liked for his sense of humor and his bright mind or would he just be viewed as the guy in the wheelchair? Would he be able to keep up with classes? Would he find a work-study job and be able to work and keep up his studies?  Most of these questions all parents consider when their child is heading off to college and their own independence.  

Jon started his college career with a four day orientation.  Jon chose to attend Nazareth College which is a small private college that is 60% female and 40% male. Jon liked the ratio of girls to guys.  Jon was busy from 7:00am to at least 10:00pm for those four days. The schedule for orientation was enough to tire and overwhelm me.  However, he seemed to thrive with his new found independence.  At the end of each orientation day he arrived home with a huge smile on his face and said he really enjoyed his day. He used his manual wheelchair for orientation and the kids took turns pushing Jon to various events. We met with the Disabilities Office to make arrangements to store Jon’s power wheelchair on campus. He only uses the power chair to navigate campus.  A storage place was found on campus where the chair could be charged back up at the end of the day.

My worries about transitioning to college were really exaggerated. This was highlighted when my husband came home after dropping him off, and said that he met the Dean of Academics. My husband helped Jon pick up his wheelchair and get his book bag hooked onto it.  Jon took off without turning around to say bye Dad.  The dean was watching this like a slow motion movie and said to my husband “I just love seeing new students adapt to college so easily.” After a few weeks, Jon was pretty well entrenched in the college community.  He tried out for the Improvisational Comedy Club, he didn’t make it but enjoys going to the shows.  He was elected the Vice President of the Commuters Association, he joined the History Club.  He did have a difficult time finding a work study job, but did find one for the fundraising Phone-a-Thon.  

Jon was at home when he had his telephone interview for this job, I overheard some of his answers.  “My experience at Nazareth so far has been really wonderful.” “I chose Nazareth because I wanted to study Biology and I thought the sciences programs would be pretty good, since the college has a Ph.D. program in Physical Therapy.”  “I really like the campus, I have a physical disability and use a power wheelchair; I really like the size of the campus and it’s easy for me to get around.”  

Jon has made the transition to college fairly easily. He has gained some independence despite Duchenne.  Like Aeschylus, Jon doesn’t appear to be afraid of storms, for he is learning to sail his ship.  

Jon at his Freshman Seminar Field Trip

Human Spirits for the New York City ING Marathon!

 Ludovic Raymond is a co-worker who moved from Paris France to Buffalo NY. He defines himself as a ‘real’ runner since 2008. Running a marathon for a charity has been in the back of his mind, especially since the impact – in terms of fund raising – is much bigger. It is also a way to give something back to running, which has brought so much to him in the past few years. His wife, who already pushed him into running and has experience working with young people whose mobility is limited, asked him ‘"why aren’t you running for a charity?" His answer was simple, "yes but I have to do it for Christine and her son".

Ludovic and I sit next to each other in the office. I am always interested to hear of Ludovic’s successes as a marathon runner. I knew he ran the Chicago marathon. Ludovic’s passion is running marathons. I’m always impressed by anyone who has the dicisipline to train and run a marathon. It is truly an accomplishment.

One day I overheard Ludovic say that he had entered the lottery to run in the NYC ING marathon. A few weeks later I asked him if he got into the Lottery, he said no, but had another Lottery chance to enter and was waiting the result. I said; “If you really want to run the NYC ING marathon to let me know. Parent Project Muscular Dystrophy is one of the charities with open spots for that marathon.”

I have served on the Board of Directors for Parent Project Muscular Dystrophy since 1999. I am very passionate about this organization’s mission and goals. My son was diagnosed with Duchenne Muscular Dystrophy on December 31, 1997. My son Jon will never be a marathon runner. Ludovic said ‘ I’m a little nervous about the fundraising.” I said ““If you don’t make this lottery and still want to run, let me know.” “I will help you raise the money.”

We have combined our spirits and our passions to raise money to End Duchenne, Ludovic has entered to run the NYC ING Marathon under Run For Our Sons. I would like to take this opportunity to introduce you to my son Jon, who was diagnosed at 4 with Duchenne. Jon is almost 18, and still mobile, but will begin his freshman year of college using a power wheelchair. He plans on pursueing a degree in Biology. He has received his Eagle Scout Rank in the boy scouts. During his senior year in High School he participated in Model UN, the 1511 Rolling Thunder FIRST Robotics team. In addition Jon’s favorite rock and roll band is AC/DC..

Your support will raise the needed funds for future therapies and clinical trials. Jon is particpating in the Ataluren drug trial at the University of Utah. We are hoping that this drug will soon be approved by the FDA. This drug will help slow the progression of Duchenne which will allow a better and longer quality of life. Jon is also participating in a trial at the University of Gainesville on a new MRI that can read muscle, which we hope will aid in analyzing the duchenne progession without the need for a biopsy.

When Jon was diagnosed in 1997 there were 4 clinical trials for Duchenne Muscular Dystrophy. There are now 54 in the pipeline. However, the progression of Duchenne is very specific to the patient and also to the mutation that the patient has. The progression is very individualized. A 17 year old like my son could may be doing very well, but a 14 year old might not be able to walk or feed himself; by 20 they may have lost their life.

With your help we will: “Never underestimate the power of dreams and the influence of the human spirit. We are all the same in this notion: The potential for greatness lives within each of us.” ~Wilma Rudolph

Please make a donation:

http://www.parentprojectmd.org/goto/Ludovic-Raymond

Finding my Gayle

I attended the PPMD Annual Connect Conference earlier this month.  Each year I always try to come away with something concrete  This year I found the session entitled Herself First very helpful and informative. It was of course geared toward Mom's caring for Duchenne guys.  However, I think women in general need to be able to concentrate on themselves.  Women in general are usually taking care of everyone one their families and neglect themselves.  One of the points from this workshop that really resonated with me was Finding my Gayle.  You may ask what that is.  I was speaking with a friend of mine who doesn't keep up with people in entertainment.  She thought I meant a Gale storm.  I explained to her that the reference was the relationship that Oprah Winfrey has with her best friend Gayle King.

The below was posted on HerSelf First website under the one minute wellness section.  As I thought about finding my Gayle, or if I could name my personal Gayle.  I realized that at this point in time, I didn't have one. In high school I had a few Gayles that I could always call upon.  In college I had a Gayle that helped me through the tough times.  When I lived in DC I had a couple of people that I could have called my Gayle's.  I also I had two Gayle's when I worked at Kodak through times of my sons diagnosis.  I left Kodak in 2003 and for a couple of years we remained in contact, we still remain in contact but do to my working in Buffalo and my friends new jobs we really don't spend a lot of time together  The person I refer to as my Gayle will ask me how Jon is doing and how my daughter is Kat is doing.  However, we both enjoy art, theater, and interesting exhibits. Things both our husbands would not find entertaining or interesting.  I have always enjoyed doing these things and really enjoy not thinking about the Duchenne world for a little while.  I hope all my female friends will enjoy the article below and will find time to "Find your Gayle",  and visit the HerSelf First website.  I think you may find this website helpful whether or not you have child with debilitating disease.  I think as women, we all need to "Get Our Gayle".

Got Your Gayle?

Monday, June 20, 2011

For twenty-five years viewers turned in to The Oprah Winfrey Show for information, enlightenment, and often, fun. Many times that fun came in the form of Oprah’s best est gal pal, Gayle King. Whether road tripping across the United States with little sleep and too much bedhead or literally climbing to new heights in their fantastic Australian adventure, Oprah and Gayle have done it all and most importantly have seen each other through it all.

Every woman needs their own “Gayle:” that go-to girl who will see you through the highs, lows, and everything in between, no questions asked. The bonds that women form with one another are unique and can be especially important when immersed in the role of primary caregiver. Ironically, individual well being often depends on the connections we form with others.

Take a minute right now and go over this checklist:

1.Whose your Gayle?

2. How often do you talk or see each other? What types of things do you do or talk about and how does that make you feel?

3.When was the last time you asked for help in order to make time for yourself?

4.Can you name three other people you call on for support?

5.What are three things you can ask for from someone else that will help alleviate stress or make space for you to focus on yourself?