Created a New Blog under Blogspot.com

I haven't posted on this blog for a few years. I found that my creativity was at a low. Hoping the new blog will help.   The new post has a specific purpose and was created as a resource page to a presentation I created for the 2016 Parent Project Muscular Dystrophy Conference in Orlando FL. 


I compiled a list of resource links.  Most of them came from the PPMD page.  I heard many people more than once say that they couldn't find something.  You can find the list at the new blog below.


I just started a new blog under https://whatsnextduchenne.blogspot.com

Moments in Life

It’s August already!  I haven’t written a blog post since May.   It’s been a very busy summer for us.  I started a new job. My daughter had a wonderful experience for 6 weeks in Australia. Jon completed a summer class.  Jon and I traveled to the Fort Lauderdale for the Parent Project Muscular Dystrophy Annual Connect Conference.   He was a panel member and provided his perspective on being a trial participant.  We took a very quick trip to NH to visit some family and friends.  Jon has been using the summer to adjust to having his own power chair. He will be able to navigate campus and use the equipment in his biology and chemistry labs much easier.  Jon’s chair is a Permobil c300 with the tilt and the elevate feature. 

Jon is also beginning to learn how to drive.   There is an organization in my area called DriveOn they teach disabled people how to drive safely. They have a modified van with the electronic modifications like the kind Jon will need in his own vehicle.   Jon is excited about the prospect of driving. He was able drive on the road with his driving instructor this week using his wheelchair in the instructors modified van.

Jon shared his driving experience with his friends when they met at local ice cream parlor.  The summer will be coming to end soon. Jon’s friends and his sister will be going back to their perspective colleges in a week or two.  This past weekend was low key, pizza, and wings.  My husband and I watched the movie a “Time to kill” while Jon preferred to surf you tube and play some video games.  His sister was out with a group of friends.

The low key evening turned into a very late night for Jon and my husband. They watched the Perseid Meteor shower until early morning.  Jon wrapped in a blanket tilted back in his wheelchair, and was enamored watching natures light show igniting the night sky.   My husband was equally thrilled he was able to watch the night sky with Jon.   This morning as we started our day I enjoyed listening to both of them discuss how beautiful the night sky looked and reminded me of a quote Rose Kennedy “Life isn't a matter of milestones, but of moments.”    I’m extremely gratified to be able to share these moments with my family.

Herself First Blog - What I know About.......

This week I provided a blog to Herself First.  This Month the "What I know About..... blogs are on being a Mom.  Enjoy my witty, wry description of myself as a Mom.

What I Know About ...... being a Mom.

A Mother's Wisdom!

Last week I participated in a pod cast called Kitchen Table Conversations with HerSelf First.  I really enjoyed the conversation with Sheila Moeschen, Kathi Kinnett, and Kris Hersom.  It was truly an enlightening conversation! Click here to listen to the Podcast.

As I was preparing for this conversation, I realized that a lot of time is spent focusing on my son.  As my daughter so aptly put it a couple of months ago “Hey, Mom, you have another kid you know.”  At 21, my daughter is moving into adulthood.  One of my greatest teachers was my own Mother.  My Mother passed away in 1999 when my daughter was 8 years old.    As I look forward to my daughter’s future, and she becomes her own person, I wish she had a chance to really get know my own mother and learn some of my mother’s lessons first hand.  They are really inspiring and independent messages. 

A.      You never know how strong you are until being strong is the only choice you have.

One of the most vivid memories I have is the day my Mother told my father to move out. I was in elementary school.  My parents’ relationship was not a Norman Rockwell painting.  My father owned a pool hall and loved to gamble. He didn’t think women should go college or have jobs.  He believed women should get married have babies and stay home.  My mother got a job as a historical librarian and had a career that she loved and was renowned for her in depth knowledge of Manchester NH.  When I was in high school my father developed inoperable lung cancer.  My mother asked my father to move back home so we could care for him.  One of the last conversations I had with my Dad was that he told me was that my mother had convinced him that I should go to college and get my degree.   

My mother had courage and strength to separate from my father, in the late 60’s when it wasn’t accepted.  My mother decided to pursue a career that she loved and was passionate about, against her husband’s wishes. My father later told me that he was pretty proud of her.  My mother showed compassion toward my father. My father could make her completely crazy with his get rich schemes and some of his dumb decisions. In the end they both showed me that even though they didn’t live together they both deeply cared for each other. My parents ultimately cared about each other.  They both had inner strength to look past their differences and allow one to care for the other during the difficult times.

B.      Don’t be afraid to fail, be afraid not to try and never give up.

My mother had me late in life. She was 40 when I was born. She suffered severe post-partum depression and was hospitalized in a mental institution for a few months. There she suffered electric shock treatments and was put in isolation. Techniques, to treat post-partum depression back then were in their infancy.  When I asked her how she managed; she said that she recited literary poems out loud to keep her mind active; with the recitation she could keep the demons at bay. In doing so she never gave up trying to get out the fog.  She was released after a few months, fully recovered from the post-partum depression. When my son was diagnosed with Duchenne, it was my mother that said:  “Don’t be afraid to fail, be afraid not to try and never give up.”   Doctor’s may not know everything and it’s OK to question them and seek other opinions.   You may not find a true cure, but you can provide a much better quality of life then they are predicting.  Keep searching and researching.    Do what you think is right.   Now when, the doctor tells me how well my son is doing after a check up, I hear my mother’s voice in my head saying. “You never gave up.”  

C.      Daughters are very special people.

My mother’s insight was coming from a place of insecurity.  Her own family didn’t think she was that smart and didn’t think that she would amount to much. She proved them wrong when she was eulogized in the Manchester Union Leader and in the Boston Globe for being one of the most respected historical librarians in New England.    My mother always emphasized that milestones in a daughter’s life should be celebrated and she should be made to feel special.  I have always tried to celebrate the milestone in my daughter’s life.  Girls need extra support and validation that they are OK sometimes.  My daughter has two favorite memories.  The first one was on her 13th birthday. We spent her birthday weekend in New York City with her aunt and cousin.  We had a great time with dining, shopping and seeing the Lion King.  The other memory she has is when we went looking at colleges in New England.  We stayed the night with one of my best friends and sorority sister from college.  My daughter loved hearing about our bad dates, boyfriends and fun antics we had during college. 

There are many life lessons that I learned from my mother.  However, I think that if I impart these three lessons to my own daughter she will end up with an indomitable spirit that will allow her to ride life’s roller coaster. 

Bubble Gum, Duct Tape, Spit, and Wine!

For the past month I felt like the old TV show MacGuyver more so than normal or the line from Project Runway, “Make it work!”   At the end of March I finished a five year assignment in Buffalo NY.  I live in Rochester, NY.  For anyone that doesn’t know how far that is, from my home to my office I logged approximately 176 miles round trip; about three hours a day driving.  Most people that live in NYC, Chicago or Boston understand.  However, in upstate NY there really isn’t a good way to commute this distance via public transportation other than to drive. So a couple of years into this assignment, I was grateful that I could work from home twice a week.   

When the assignment ended I was grateful, I could now be in Rochester and be able to help Jon get ready or take him to school and hopefully find work in Rochester.  My husband needs a break sometimes.   However, life with Duchenne is always changing.   A few weeks ago Jon slipped in his room getting out of bed in the morning.  He fell and ended up with a compression fracture. Normal things like dressing, bathing, eating and toileting became “Make it work” events.  He couldn’t walk anymore without lots of pain, transfers between the car and getting to the wheelchair we needed to figure out.  The upside, I figured out how to drive his wheelchair. I would have Jon stay in the car while I brought his power chair to him.   My husband used the manual chair to get him from the car to the building where we store his power chair on campus.  It took a couple of weeks to get the x-rays and the MRI to uncover the precise location of the pain.   Jon kept saying he bruised coccyx.   A week after Jon fell; he and my husband were on a plane to Utah for the Ataluren clinical drug trial. My husband made it work.  They needed to wait for the isle wheelchair which is always a long and tedious process.  Jon managed the pain with Tylenol.  On Sunday, they called from Utah and said that Jon’s pain wasn’t getting any better.  I called the Dr. first thing Monday to get an x-ray scheduled for Tuesday morning.   The x-ray uncovered a problem, however it wasn’t clear if this was an old issue a new one.  In 2007 when we had a complete work up done at Cincinnati children’s, I had foresight to request a complete report of the test results. I was able to notify the back specialist where the previous fractures were.  It was determined that an MRI was needed.  Insurance needed to approve the MRI.  It took a week to determine that it was a mild compression fracture.  Jon will need a back brace.  I spoke with the back specialist regarding the brace; my concern is always to keep Jon as mobile for as long as possible.  Can a brace be made to account for Jon’s posture?  Jon’s standing upright and walking is a balancing act that he alone has figured out.  I’m not sure if we can brace his back so the fracture heals and still allow Jon to walk.   We met with the brace specialist.  The brace will ready in a week.   In between the appointments for the measurements and picking up the actual brace Jon saw Dr. Biggar.   Jon is now walking and the back pain is gone.  Jon may not need to brace by the time it’s ready, but we will have it for next time.

Life with Duchenne, is ever changing and filled with “MacGuyver “and “Make it Work” moments. My analogy for anyone that’s not dealing with Duchenne is that my life is held together with bubble gum, duck tape and spit and on occasion a glass of wine.  However, no matter what your life is like I think we can all take some lessons from the MacGuyver TV show.

Lessons Learned from the TV Show MacGuyver’

* Any problem can be solved with a little ingenuity.
* One person can make a difference.
* Never underestimate the power of chocolate.
* Nice guys don't always finish last.

http://www.neloo.com/fannesite/lessons01.html

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