The Secret of Skirts!!!!

"What's up with the skirts?"

"Why are you always wearing skirts?"

Some of my friends have asked me this question and some of you who see me frequently are probably wondering also.  Today the secret is revealed!

Three months ago, my wonderful British physical therapist, Sue, started advocating I wear skirts.  I thought it was a crazy idea from England, I love wearing pants!!!  But ALS changes many things, and she persuaded me that it was easier to use the Hoyer lift and toilet when I could just lift up or remove the skirt.  Then she taught me to use a female urinal, which has added new independence to my life!!  I do not have enough leg strength and arm strength to wiggle out of pants to use the portable urinal.  But I can lift  up my skirt!!!!!
                                             Maybe this is more info than you wanted, but now you know the secret!

Quick Thinking at the Mall!

I went to meet my friend, Alicia, at John Harvard's Brew Pub for lunch last Friday.  I drove the fifteen minutes from my house to meet her.  I had no problem parking in an accessible parking space with diagonal stripes to the right of my van.  This space allows the necessary room for the side ramp to come down and for me to roll out.  The picture to the left shows the inside of my wheelchair van.  There is a lock-in system for my Permobile wheelchair, so I just roll in, lock in, and drive using hand controls.  We had a great time, lots of nice talks about our kids and our families.  After lunch, Alicia suggested walking me to the van; I said it was not necessary, but she insisted. 

When we got to the van, some one  had parked next to my van on the diagonal stripes!!! Ohhhhhhhh no!!!
We could get the ramp down but there was no room for the wheelchair. Alicia said she would back-up the car a few feet, looked in, saw there was no seat for the driver, and then she said, "Ohhhhhhhh no!!"
We tried to problem solve and thought maybe a store or the restaurant  would led us a chair for Alicia to sit on, so she could drive the van. But she is smart and fast-thinking.  She grabbed a shopping cart, pushed it up the ramp, turned it on its side, sat on it, and backed the van up the necessary four feet, so then I could get in, after she removed the shopping cart.

What did I learn?
1.  Do not panic, we can find solutions.
2.  Shopping carts have many functions and can be used as chairs, when turned sideways.
3.  It is good to have clever friends!
4. Keep a folding chair in the back of the van for these future problems.
5.  Remind people not to park on the stripes  next to a side entry van!

Opening Day at Fenway - Red Sox defeat Yankees!

Sam made a great assumption at Christmas 2009 - he assumed attending a Red Sox game on opening day would be on my "bucket list".  He was correct!!!  He gave Dan and me tickets to opening night, April 4, at Fenway Park in Boston.  He also made sure he had to accompany us to the game. 

It was a wonderful evening, warm weather (57 degrees), a come-from-behind victory for the Red Sox, and the first pitch thrown out by a former Red Sox player, Pedro Martinez, who the  whole stadium still loved!
It was a magical night and one I will always remember!

Crusing with the guys was wonderful !!!!!

-Seven days, March 14-21,  at sea, leaving from Fort Lauderdale, Florida to the southern Caribbean with four wonderful guys - Dan, Sam, Joe, and Tim. Pictured to the right is the top deck of our ship, the Celebrity Solstice.  It has a large lawn and we were all able to be play bocce, but I did not win the game.

Here we are on St. Patrick's Day morning on the balcony of our room.  Joe has supplied five green Irish hats, which we wore all day, five Guinnesses for breakfast, and sweet Irish music on his IPOD.  Plus we had room service deliver breakfast goodies!  What a treat!!  We started and ended the day singing and drinking with Guinness!

Sam, Joe, and Tim looking mighty fine for their Irish dinner!!!

Playing by the pool and sticking my toes in the cool water.  Each day was sunny and in the 80s!!

In the picture to the right we are leaving Tortola, where all the guys had wonderful snorkeling after taking a taxi ride to a great beach.  I chilled on the ship!  Here we are all cleaned up for dinner and then some serious family board games!  Joe won Rummy Cube, but Tim beat me in Scrabble. Plus frozen drinks for all!!

On the last day we played croquet and Mom almost won!!!  On Labadee, near Haiti, I was able to get my toes in the aqua ocean waters of the Caribbean, thanks to Sam' s strength and everybody's help getting me into a beach wheelchair.  We had a wonderful seven days together, saw fireworks, talked, laughed, played and reminisced!  The air travel was not too bad, the wheelchair was not damaged, and I will probably try flying again some day.  Dan was super with adjusting to new commodes and slings and Hoyer lifts.  We were truly blessed and we are grateful!!!

Vacation Anxiety on the High Seas?

Why am I so anxious on going on a seven day Southern Caribbean cruise with my wonderful family, Dan, Sam, Joe, and Tim?  We have planned this for six months and now that we are leaving on March 14, I am a bundle of tension and fear.  We will be leaving out of Fort Lauderdale, FL and traveling to San Juan, Tortola, St. Martens, and a few other places.  We have an accessible room with a balcony, a roll-in shower, raised toilet, and raised bed.  We are renting a Hoyer lift and shower commode chair.  And still I am anxious!!!

I am anxious because:
I hate all the transfers involved with airtravel - from wheelchair to aisle transport chair and then repeated to get off the plane.  Transfers involve two large men hoisting me quickly from chair to chair.  Last October, the last time I flew, my back was hurt by the transfers and I was very nervous.  Now I need to keep a lid on my anxiety.

My wheelchair could be damaged.  My $30,000 Red Rover which I am in 16 hours a day is vital to my independence and comfort.  While we will bring a back-up manual chair, it would  be terribly disappointing to use that, to say the least.

Dan will be the primary caregiver, in an environment where I will need to be lifted out of  the bed, the wheelchair, the shower, the toilet.  Each time we put the sling under me, adjust the straps, test the sling, and raise me up and lower me down we are looking at 15 minutes of activity and work for Dan.  I worry that he will be worn out by care for me on HIS vacation.

Sam, Joe, and Tim want to get me into the water - any water - pool or ocean.  I cannot stand, how will they do this?  Will they understand if I cannot do this?

On the positive side, I know I will love spending time with my family, eating good food, being in a warm environment, seeing new places, playing games with everyone, and sharing a few drinks.  We will take many pictures, which I hope to post, and make happy memories and count our blessings.  Bon Voyage!

Super Bowl and a Super Weekend !!!!!

Despite all the difficult challenges of ALS, sometimes there are days of pure happiness and gratitude.  This happened last weekend when Tim, Sam, Joe and his girlfriend, Melissa came home for Super Bowl weekend - flying in for two short days from Texas and LA.  We had quiet time together and also fun - ate at Helmand, a delicious Afghanistan restaurant in Cambridge, then went to  hear very uplifting music from Ladysmith Black Mambazo.  On Sunday we all prayed together at our church with great music, saw the Orlando Magic beat the Boston Celtics in the last quarter, and went home to the Super Bowl.  Melissa, who went to Tulane, knew the "Who Dat" cheer and dance, which she taught us all to do, as we cheered on the Saints to victory. 

Now everyone is gone, I miss them, but we did make some wonderful  memories of family and good times that will be in my heart each day until I see our sons again, hopefully in March!

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!