Being a guest lecturer at Harvard Med School

My doc, Merit Cudowitz, was giving a lecture on ALS to second year medical students in neurology and invited me to share the podium with her. There were about 60 students in the lecture hall, and Dr. Cudowitz asked questions and I answered.

It seemed important to give the future docs a human face on a disease. I told them how I got the diagnosis, how my legs had deteriorated from cane to walker to scooter to wheelchair. They responded with thoughtful questions - did I feel a burden to my husband (yes, sometimes), how do my kids feel about this (we need to talk more), are you anxious about dying young ( yes, a little, but I still try to get the most out of each day), was the diagnosis a surprise (totally!), do you think stem cells will save you ( not me, but the next generation of ALS folks). I am glad I was invited to share my ALS experiences, and proud that I drove into deep Boston by myself!

The Texas trip was wonderful!!!!!!

WE visited IDEA Academy College Prep, San Juan, Texas,
now open with grades K, 6 and 9.
We spent Saturday morning touring Sam's new school. Tim flew out from LA to Austin and then Joe and Tim drove down on Saturday morning. Dan and Deb went to school all day on Monday, Deb mostly hanging out with students with disabilities, Dan working for IBM long distance.

The flights went fine, the power wheelchair, Red Rover, survived, and it was a great trip!

Posters near kindergarten classrooms announcing college dreams! Currently seven percent of the residents of the Rio Grande Valley have college degrees.


Above: Sam talking with ninth graders about the consequences of the Friday food fight!
Above: Sam getting ready for dismissal and bus duty.

Fun in Sam's garage - all the brothers giving each other hair cuts!!
The wheelchair van we rented, on-the-go in Texas with Joe in the back and Tim in the front!

Below: Halloween happiness at Sam's house, where we all carved our pumpkins (even Deb) just like in the days of long ago! Really, really fun!!!

Outside Sam's office - Sam, Joe, Tim and Dan with me as photographer! Can't wait to go back!

Why do they live in Texas???

Dan and I are going to Texas for Columbus Day weekend. We are going to see our son, Sam, who is principal of a new school, IDEA College Prep Charter Middle School, in San Juan, TX. It is in rural South Texas, very close to the Mexican border. WE have been planning how to get there for more than one month. We need to find:
1. An airplane that is large enough for the wheelchair to be stored.
2. A seat with an armrest that lifts up - for easy transfer from the transport chair.
3. Upon arrival, a rental wheelchair van.
4. An accessible room in a nearby hotel, since Sam's bathroom is not accessible.
5. A way to use the toilet in Sam's house - commode, high riser toilet seat?
6. A way to go deep sea fishing on a boat, which tells us they are accessible, but not toilet.

We are excited to be taking our first journey with the electric wheelchair. We are thrilled that Joe is driving down from Austin (6 hours) with Tim, who will fly in from LA. We are just anxious about the trip - stay tuned for what happens in Texas!!

The first week of classes!!

The first week of classes was wonderful - it was a joy to be with my students - one section of a class on autism for 25 students and two sections of a senior year course on special education assessment and teaching methods with 13 students in each, plus one independent study.
The driving, the parking, the restrooms, all my worries and all went well! Sometimes that really does happen. Here is a piece written about me returning to teaching from the Providence Journal.

The challenge of the MDA telethon

Most of the research for ALS is funded by the Muscular Dystrophy Association. They are the producers of the infamous Labor Day telethon, in which, Jerry Lewis, begs for money for his poor children who cannot walk, cannot go to Labor Day parties, cannot - cannot - cannot. I have disliked this group, MDA, for many years. I hate the PITY!!!

Now I am on the other side, I am a recipient of the MDA funded research that Mass General Hospital undertakes to study ALS. My doc says in two years or less they may be able to stop the progression of the disease - not get you walking again, but keep you living and breathing!

So Dan and I agreed to be filmed in our home, talking about the changes ALS has made in our lives, and here is the link.
Watch the link here and then you can avoid the telethon.

Honoring Ted!! Honoring Disability!

Having lived in Massachusetts for most of my adult life, my husband Dan and I decided to attend the wake for Ted Kennedy at the Kennedy Library in Boston, 20 miles away.

We got into a UMass parking lot and then Dan and I walked ( I had my newred wheelchair) to the library. It was very
interesting, inspiring, and wonderful - it was a very diverse crowd, we
met so many immigrants who wanted to thank him for immigrant legislation- many, many Africans. It was so respectful and quiet the whole time.

When we arrived at 8 they told us, it was a three hour wait, and we left
the library a little after 11. Everyone who arrived seemed determined
to get in line. The line was longer when we left then when we arrived.

The one strange thing was that the ushers or organizers kept coming up to me, saying I could go the the head of the line. I think because I was in
the wheelchair they wanted to give me special treatment. However, it
was a beautiful summer evening, in a lovely setting, with wonderful
people, so I just kept refusing to get to the head of the line. One
time they asked how many in my party, they could move us all to the
front, and Dan said thousands were in our party.

I just think that Ted worked so hard for equal rights for people with
disabilities, and one right is being with everyone else and NOT getting
preferential treatment when it was not needed. I was sitting the whole
time and everyone else was standing!

Most of all I wanted to thank Ted for his role in passing the Individuals with Disabilities Education Act and the Americans with Disabilities Act. Both have made enormous differences in the lives of my students, and in my own current life! As Tim said, " Massachusetts has lost its warrior!"

Driving down the highway of life!!!!

I did it!!!! I drove on the highway, Route 95 South, by myself, for 150 plus miles. I drove all the way from Portland, Maine to my home outside of Boston!!!! Yippee!

On Sunday, we dropped off Joe and Melissa at the Portland airport and had two cars! Dan drove one car home and I had to drive the other!

I got in my power wheelchair, clicked into the Permalock system bolted on the floor, grabbed the knob with my right hand, brake with left hand, said a prayer, and off I went - down the highway to home, sixty miles an hour!!! The longest hand control driving experience and solo!!! The next challenge - driving to work in Providence in one week!