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


Wednesday, September 18, 2013

Things I really miss...

(not in any particular order):
- conversations and talking clearly
- cooking for my family
- eating 7 layer dip, chips, and salsa
- traveling
- the ability to swim
- options
- having a happy life
- looking forward to the future
- working
- being the wife and mother I was without this disease 
- washing my own hair and shaving my own legs
- the happiness of those I love most
- being able to scratch an itch on my shoulder or back
- being able to apply makeup of any kind
- wearing cute shoes with heels
- doing laundry
- driving
- making things happen, getting things done, and feeling the sense of accomplishment 
- book club
- being active and social
- walking normally and without fear
- being the woman I was before ALS

Friday, August 9, 2013

The uncertain future...

Some days I just feel like I'm spinning my wheels and can't get the traction to move forward.  Sitting still is just not my way but since my diagnosis, there have been too many days where I feel idling in one place is all I have, even though it is not the place I want to be.  There are times I feel like I can't plan for the future when the future is so uncertain and some days, a few really bad days, I have just felt completely irrelevant.  Lacking the ability to communicate easily, I have found myself keeping quiet more often and have had a harder time expressing my opinions lately because it takes too long or is too much effort. 

I realize now that this is a road that leads to losing myself and I am not ready to do that.  Even with hope and a positive outlook, every now and then it can be all too easy to fall into the trap of forgetting that who I am is more than what the disease has taken.  I am still here, I am still me, and a little reminder from the ones who need me most was all it took for me to see beyond the ALS and start planning for that uncertain but visible future once again.

I know there are some who cannot look at me and see beyond the ALS anymore, and I get that, but I do not want to sit still until that is all anyone can see, including me.  The future is on the horizon and the truth is that nothing is ever certain.  I just need to remember to keep moving forward and enjoy the ride, wherever it may lead...


Saturday, July 6, 2013

Memories of Independence...

Last week, as we celebrated our nation's independence with the pops and bangs and rocket's red glares going on all around, I couldn't help but think of the major loss of independence I am experiencing.  Selfish, I know, but it is impossible for me not to feel these losses on a deep and personal level.

Always topless...
About two months ago, I stopped driving.  No one had broached the subject with me, there was no doctor request or even a question from anyone as to whether I was considering this, but I was.  I talked about it with Dan and we discussed my limited options (including the possibility of getting a car that was easier for me to drive).  The thought of losing that level of independence is devastating, as so much about ALS is.  There would be no more jumping in my little car, putting the top down and driving over to Starbucks to pick up my daily trenta black iced tea (no water, no sweetener), no more driving across the 206 bridge at sunset, no more feeling a car engine roar and respond to my heavy foot on the coastal and canyon roads I grew up with.... 

Sunset as seen from the 206 Bridge (FL)
I remember the day I got my driver's license, it was the day after I turned 16 (only because I couldn't convince the DMV to open on Sunday just for me).  I took the test in my faded yellow early 1970s VW square back with a stick shift transmission on the hilly roads of SLO.  Getting my license was so important to me, I craved the independence and freedom in an all encompassing way, but I wasn't willing to take the easy way out by taking the test in my mom's automatic on the flat roads of the agricultural community about 30 miles to the south of us.  I aced the driving portion of the test with a 96 and I spent the next few years driving the back roads, beach roads, canyon roads and freeways of California, from San Luis Obispo to Santa Monica and everywhere in between.  I cherished the freedom and truly enjoyed the ride.

Over the past year, I have felt ALS rob me of the pieces of my independence little by little and I have made adjustments and dealt with each change, each loss.  However, making the decision to give up the very essence of my personal independence, driving, was not an easy one.  In many ways, it was the hardest independence-related issue I've dealt with so far because it was a decision I had to make, I had to choose to give up the freedom that driving allowed me to have because I knew it was the right decision and delaying it would only be selfish and possibly dangerous.  I thought about how so many elderly people ignore the signs that their driving days should be over because the idea of losing one's independence in such a drastic and absolute way is just completely life altering.  After knowing such complete independence for so many years, having to depend on others for every trip to the market, hair salon, Redbox, library, Starbucks, doctor appointment, or social event is humbling to say the least, and that does not include all the little drives we take just because we can (to the shoe store, the movies, the mall, the beach, for an ice cream cone, to watch the sunset, whatever). 

I am so lucky to have my husband by my side everyday, so fortunate he is home full-time with a willingness to take me wherever I need, or want, to go.  Unfortunately, it doesn't really matter if you are relying on the person closest to you or a public transit system to drive you, the loss of independence just takes something out of you, away from you, and for most of us, we will never regain that piece of who we are (were).

Just one more piece in my ALS puzzle.