Celebrate the season with joy, love, and hope !!

Today I feel blessed for all I have been given - a devoted, loving husband, Dan; three sons home for Christmas for a week, Sam, Joe, and Tim.  They are very helpful, very lively, and keep it fun.  My dear friends and family who are always there for a helping hand.  Letters of support from near and far, my kind employer, Providence College, all the staff at the ALS clinic, and so many others who help me live my life with quality!   I also humbly appreciate our warm, accessible home, good food, hugs, and the beauty of the winter snow!

I am also grateful for the following:  Red Rover (my wonderful Permobil 300 wheelchair, which even works in the snow!); my sleek black accessible ramp van with its handcontrols, my sturdy shower chair, my old walker which still gets a little workout each day, my disability parking placard,  and all the other little adaptations that help me get through the day.  I am grateful I live in a time and place where these things are possible!

We will send a mighty prayer of gratitude to God on Christmas Eve Mass. God's blessings for all my readers!

Looking forward !!! Looking back!!

As the year winds down, I take this opportunity to think about how ALS has changed my body this year.  Many of you are curious about my functional abilities, but are too polite to ask.  I welcome questions, so I can share with you the ups and downs of daily life, which Dan and I experience.

December 2008

 - Dressing Independently
 - Getting out of bed with walker
- Using walker at toilet with one grab bar
- Transfer help onto shower chair in bathtub
- Easy transfers on and off scooter (for outdoor use only)
- Driving Honda CRV with feet and walker in back seat, no help needed
- Ambulating indoors with walker only, 15-20 feet at a time.

December 2009

- Need assistance with legs getting out of bed, I cannot move them off the mattress.
- Need help transferring from bed to wheelchair
- Use raised toilet (20 inches) and two grab bars to transition from wheelchair to toilet independently.
- Need transfer help to get into shower chair in roll-in shower
- Need assistance with shoes, socks, underpants, and pants - the rest I can do.
- Need assistance with daily walk using walker from dressing chair to wheelchair, placed four feet away.
- Need assistance with cooking on stove, although I still make a superior salad!
- Need assistance with all household chores - bed making, laundry ( I do  the folding!), dishes, etc.
- Order weekly groceries online through Pea Pod, need assistance putting groceries away.
- Drive distances less than 30  minutes with accessible van and hand controls.
- Neck weakness causes driving fatique; sometimes wear neck brace at home in the evenings.
- Need assistance undressing and lifting my legs into bed.

December 2008 and December 2009

- Still see everyday as "gift"

- Still have good arm use, finger use, and shoulder use

- Still can talk, yell, sing, scream, and laugh

- Still can cry buckets on hard days or when I look at Dan, who looks sad.

- Still count the hours until I will see my wonderful sons again!

- Still grateful for the love and support of family and friends!

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!

Swimming makes us cry!

Yesterday my brother Mike and his wife Cindy, and their three kids - Christopher, Katherine, and Caroline, plus my dearest Dan, decided we would go swimming in Dennis pond on Cape Cod. So we drove two hours to their summer house with the donated beach wheelchair and secret hopes that I would be able to get near the water. The beach wheelchair is enormous and took up the entire space of our wheelchair van!

We arrived to big smiles and eager hands which helped with the transfer to the beach wheelchair ( I was already in my bathing suit from the start of the day!). We had a wonderful picnic on the beach, making strategies for the big attempt into the water. Needless to say, everyone helped me into the water, off of the chair, and then I was swimming and floating and walking and laughing and then we just all had a tear in our eye! To get me back onto the chair, even some strangers and the lifeguard helped stabilize the water throne which tried to float away! Then down the road to a great barbeque at my Mom's house and her famous potato salad and a 9 p..m. viewing of the space shuttle!

What a great day!!! No matter that last summer I swam far out to the boulders in the pond and this year I swam ten feet with a life jacket on. My dear husband and family made it possible for me to yell, "This summer I went swimming! This summer I might have drowned, but I kicked my legs and I moved my arms, yeah! I moved my arms around!"

New wheelchair coming in four days! Yikes!

Very emotional day to pick up the phone and someone tell me "the wheelchair is ready for delivery"! There is no way now to pretend not to be disabled, no way to pretend I still can walk, no way to say "I just use a scooter around the house!"

Today feels like a big punch in the stomach! Today I realize I really do have ALS, I really am disabled, and I really need the wheelchair! The emotions are overwhelming.

Putting a positive spin on all this means it will be easier to go over rough terrain, easier to drive once the lock in system is in place with the van and hand controls, and I will be able to travel longer distances. So I guess it will really help, but it is still so tough to know this is my new life, my future life!

July 4 on Block Island
What could be better than July 4 weekend on beautiful Block Island, Rhode Island - a short, one hour ferry ride from the mainland? Almost everything accessibility wise!!
We went to visit childhood friends from DC who had invited us to stay at their house - we knew there were four steps in, we brought our eight foot suitcase ramp and a six inch wedge. We didn't know my scooter would need to cross 50 yards of lawn and rocks before getting to the ramp!!
We didn't know the bathroom doors would be 18 inches wide, even with the door pulled off (forget privacy). We could not get the scooter into the bathroom!! We did not know that it is was a BIG step down to the deck overlooking the ocean! We did not know the bed would be four feet high! We did not know the acclaimed historical restaurant would have five steps, but no ramp - the waiters would carry me in? Too many accessibility challenges!! We left within 24 hours, to return to our accessible home! What an adventure!

Moving Day

Moving day tomorrow! Moving to the accessible house, except the contractor is not finished with the bathroom. Who needs a shower right? My three terrific sons are here to help pack! We will have some good times!