We made it to New York City!!!

For the past eight years, my kindergarten friend, Pam, and her husband, Matt have met Dan and I in NYC for a winter weekend of jazz, theater, and fun!!!  We live near Boston and they live near DC, so it is the perfect place to meet.  What would happen this year with advanced ALS?

Getting a hotel for one night, seemed too much work!!!! Size of room for power wheelchair, adaptive seating for showers, toilet risers, height of bed, etc. etc. etc.  But should we just give up on going to the Big Apple?  Maybe???

But I love many things about Nigeria, and I had read several glowing reviews about a new musical about the grandfather of Afrobeat, Fela!  I really wanted to see the musical about his life, called FELA, hear the music, see the African dancing, and reflect on his political, musical, and raunchy life.  Some say Fela is the Bob Marley of Nigeria.

So we went for just the day - Amtrack at 8 a.m., time for a fast lunch, the play, and a few drinks and snacks afterwards before boarding Amtrack at 8 p.m.  We never took a cab, just walked the seventeen blocks in 15 degree temperature and the north wind.  Disability services on Amtrack were good, and it was a smooth trip, thanks to a little help from my friends, Pam and Matt, and of course, my dear Dan.  What did I learn?  Never say never, maybe there is another way!

SNOW MOUNDS!!!

Last Thursday evening, I was rolling down the streets of Waltham, MA with my mom and Dan, heading from a lovely Mexican dinner to the movie theater  to see "Young Victoria".  It was a cold night, but we were ready to cross the street and walk two blocks.  After rolling down the sidewalk a long ways, I was ready to go across the cross walk and into the theater, but I could not!  The ramp and sidewalk were filled with ten inches of frozen snow, hard pack.  Dan kicked at it, but it would not budge!  My mom, almost 82 years old, climbed over it, hanging on to both of  Dan's arms.  I had to return to from where I started and go three extra blocks to get into the theater.
What are people thinking - wheelchairs are tractors?  Just  another ALS frustration!!!  The movie was great!

The Flying Trapeze - oh geez!!!!

Over the holidays, I was "fortunate" enough to receive a Hoyer lift, based on the recommendation of my physical therapist, that my  ability to transfer was declining and my legs were weakening!  This is not fun!!!

I have never liked roller coasters, nor swinging high in the air!!  This is terrifying!!  Dan, who loves all things with flight, has been in the sling a few times, and likes swinging around in it!  Dan is still being trained, but we all know that any day this will be my means of transfer.  It is time consuming to get me situated in it, all clipped in safely, and then move the lift from bedroom into bathroom.  I hope my transfer legs hold out a little longer!

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!