Thursday, August 10, 2017

Friday, May 30, 2014

Walk to Defeat ALS - April 2014

As ALS Awareness Month comes to an end, I want to give a great big Thank You to all of my family, friends and the strangers who joined, supported and donated to Sam's Twysted Ride teams in both FL and CA!  The Walks to Defeat ALS, which took place April 12th, raised ALS Awareness coast-to-coast and our teams alone collected donations for ALS research and patient care services totaling over $10,500 collectively! Thank you, thank you, thank you all!

Sam's Twysted Ride Florida Team

Sam's Twysted Ride California Team

It's how we roll
My personal Walk Day experience was both heartwarming and heartbreaking.  It is wonderful to have thousands of people gather to support their family, friends and in memory of loved ones who have already passed, working toward a common goal, making a difference together.  On the other hand, while we are winning many battles on the ALS research front, the war is far from over and there are still too many casualties ... we need to find a cure for ALS and win once and for all!

Me with ALSA Team

Friday, March 28, 2014

Why I Walk...

Walk to Defeat ALS 2013
I'm participating in the Walk to Defeat ALS on April 12th and I would really appreciate your support!  Your tax deductible donation can easily be made by clicking on one of the two Walk to Defeat ALS links on the right column of this blog today. 
One of the Walk slogans is "Why do we walk?" and my reasons are many yet can be summed up with "I am walking because ALS sucks and no one else, no other family, should ever have to suffer with it.  We need a world without ALS!"  

In the past year, ALS has taken its toll and a lot has changed for me.  On March 10, 2013 I wrote a post about some of the ways having ALS had allowed me to feel a new sense of freedom.  A year later, having ALS feels like being in a bad horror movie that only gets worse.

• Last March I was able to use sign language to communicate with my family and much of my community.  Today I cannot sign at all or move any of my fingers individually (which also makes typing very difficult) and I have lost almost all ability to communicate.

• Last March I was still able to drive safely with no issues or concerns.  Today I have a hard time just getting in and out of the car, I cannot open a car door from the inside or out, and I cannot buckle or unbuckle my own seat belt.

• Last March I enjoyed eating out and was still able to eat a pretty wide range of foods, even foods new to me like sushi.  Today I do not like to eat in public or even at home with anyone other than my husband and son there.  The foods I can eat now are much more limited and the act of getting food to my mouth is exhausting because of the extreme weakness in my hands, wrists, and arms.

• Last March I was still living independently with the abilities to cook, do most household chores, go places on my own including shopping, sign classes, the pottery studio, movies, the beach, walks with my dog, etc.  Today I cannot get farther than my driveway on my own.  I cannot get around in the world on my own because I cannot move my manual wheelchair on my own.  I cannot walk much or with any feeling of security...and I cannot communicate.

• Last March I was able to walk up and down stairs which allowed me to walk up to Las Olas Massage and Wellness on the second floor for weekly massages that helped with my muscle pain. Today I can barely make it up or down a single step and I can no longer reach the massage center. Luckily, Crystal visits my home every other week to massage my arms and neck which is such an amazing gift!

• Last March I weighed about 155-160 lbs.  Today I weigh 117 lbs and barely recognize myself.

• Last March I could shower on my own, shave my own legs, dress myself, and I could make my own schedule.  Today I cannot do any of these things on my own and, therefore, I must follow the schedule of others.

• Last March I was able to adjust to the changes ALS was causing in me and I found ways to compensate so that I could still feel mostly like a version of myself, the me living with the challenges of ALS.  Today, I cannot do most of the things I like or want to do and because ALS has taken so much from me, my family is suffering too, unable to live their best lives. Though he does a noble job of it, my husband was not cut out to be a stay-at-home 24/7 caregiver...and I am not cut out to be dependent or to need this level of care.

These are some of the realities, for me, of having ALS.  This is why I am walking and why I am asking for your support.  You can make a donation today by clicking on one of the two Walk to Defeat ALS links on the right column of this blog, no amount is too small or too large.  Together we can help find a cure and rid the world of ALS!

Friday, February 28, 2014

Happy birthday Uncle Bill ...

Uncle Bill in 2008
I've been thinking of my Uncle Bill a lot this month.  Today would have been his 62nd birthday and I know he is being remembered by his wife, his family and his many friends with love.

In January of last year, he was planning to come to Florida for a visit.  About a week before his trip, he found out that the pain he had been having in his stomach was cancer.  In a matter of moments his trip was cancelled, chemo was scheduled, and his life was changed forever.  That February he married his long-time girlfriend, had surgery to remove the tumor, and celebrated his 61st birthday.  In March and April, he tried to take it easy, allow his body to heal and recover but he also made time for a quick honeymoon in Catalina.  In mid-April, he was able to return to work for a few hours a day.  He told me he looked forward to feeling better and getting back to his life.  For a while, I thought it would happen, but on June 2nd he passed away.

During those months, while in the midst of the battle for his life, he made it his mission to raise awareness about ALS in his San Diego community.  He personally contacted his local ALS Association (ALSA) president and got his philanthropy group, The Parrotheads (he was a big Jimmy Buffet fan), involved.  Thanks to his unwavering dedication, The Parrotheads added the ALSA to the groups they support with charitable donations (no small feat, I assure you).  Did I mention he did all of this of his own volition while fighting cancer?! A true act of love and heroism in my book!

I was fortunate to have spent a couple of years living near him in San Diego before either of us knew the horrible but different deadly illnesses we would face.  We took the opportunity to share meals and family time together and I am left with many happy memories...and a hero!

Happy birthday Uncle Bill and thank you!

Wednesday, February 12, 2014

It has been a while...

In the months since I last wrote here, life has been...difficult and full of new challenges.  For example: Sitting at the computer to type is difficult, typing itself has become quite a challenge as I can now only type with the middle finger on my right hand and I have to use my left arm to support my right.

I will make the effort to get back here more often to write and share my experiences once again.  Thank you for your patience....

Thursday, October 10, 2013

Waiting for a better tomorrow...

I am not going to lie, these past few months have been really hard both physically and emotionally.  I hear from so many people how, to them, I seem "brave" and "inspirational" but I don't feel that in myself.  I feel trapped and alone in this body and life that I once loved and depended on but no longer can.

Over the past 40+ years, I got through tough times knowing that I could make it because tomorrow had the possibility to be better.  With ALS, tomorrow is not better and there is no one - not the doctors or medicine men or faith healers or alternative care practitioners - who can offer real hope today that tomorrow will have options for improvement.  I know many top researchers, scientists and doctors are working on finding treatments and a cure right now, and I appreciate them all, but even if they found the answer today, it would take at least 18-months to get it to the shelves and, ultimately, to patients.  That makes for a lot of rough tomorrows ahead....

On the other hand, there are areas of medicine where doctors can heal the sick and injured and provide hope that tomorrow will be better.  In the midst of the daily challenges of living with ALS,  and because of it, I had a personal opportunity to witness this.

Last month, Dan and I went to the outdoor mall to do some shopping.  After getting a great parking
Sunglasses that saved my eye
spot, I got out of the truck and moved toward the sidewalk.  As I stepped up, my flip flop went into curb instead of stepping up onto it and I went down, face first.  I was stunned and hurt with blood dripping down my face and into my eye and I remember hearing my glasses break.  Dan was by my side immediately and helped me turn over and sit up.  I could hear two ladies stop to help, both nurses who happened to be shopping nearby, but I never saw them.  I kept my head down and just focused on breathing and staying calm.

Me in the ER
Broken after all
After a few minutes of trying to get the nurses to stop grabbing my arms to help me up (from the ALS, my arms do not have normal mobility and hurt very badly when moved in the wrong direction), Dan got me back into the truck and on our way to the ER at Mayo.  Once there, where they already had all my medical records, the ER team went into action.  They cleaned my face, did a CT scan of my head, and took x-rays of my right hand which hurt a lot.  The CT scan showed all clear and my hand did not appear to be broken so they sent me home with some pain meds in my system and a prescription for more. Two hours later, they called to invite me back because, after a closer inspection of the x-rays, they realized my hand was broken.  Also, my teeth went through my lower lip so eating was awful for the first few weeks with very few options that I could even consider.  (Needless to say, I lost a few more pounds.)

Thank you James
The follow-up visit with orthopedics (Dr. Montero was kind, encouraging and knowledgeable and James made me a customized removable cast) was a great experience, all things considered. 

Basically, I am crushed because my level of independence went down further while my feelings of being a burden, both to myself and those around me, went up.  Worst of all, my legs feel weak and unsteady most of the time now which prompted the ordering of a wheelchair.

The upside?  My face and hand have healed quickly which means that my body is still healthy and in good working order...if only I didn't have ALS, tomorrow could be better!  If only....

Day 1

Day 10

Day 26