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.