Wednesday, May 26, 2010

3WW - Abandon, Gradual, Precise

This my last "educate it forward" and ALS Awareness post for May. I'll never stop educating ALS forward until there is a cure. ALS is is only a part of my life and I will never let it define me. I have lived most of my adult years living with ALS. 19 years to be precise and with this gift of time I must be a voice for my fellow ALS warriors, keeping my own voice, mine.

I walk with a walker due to bad balance and I have tight leg muscles (spasticity) which creates a gait. My gait, after 19yrs, has worn down knees so I use a cute scooter for stores and walks. My hands are curled like claws, leaving one finger left to type. Pincher's don't work but I still have a grip. My torso cannot help my weakened arms to lift me out of bed. Arms shake when lifted up, making it hard to get food in my mouth. I can't get too hot or too cold and my tongue muscles make it hard to speak so I sound drunk. I do not suffer at all compared to most ALS warriors.

Next comes choking and aspirating on food/saliva. Then I will be sentenced to an electric wheelchair. My neck will need a brace and I will need to be bathed and wiped on the toilet. I will over salivate needing suction and must be fed through a stomach tube. Sounds easy but it can get infected or leak stomach acid burning your skin. I will gradually become paralyzed and unable to speak. I do have a computer that is banking my voice now and will speak for me using my eye's. My mind will remain sharp but 10% will get frontal lobe dementia. Lastly my diaphragm will weaken, needing a bi-bap mask to help it function. This is when I will choose to die or allow a ventilator to breath for me.

I will struggle with not feeling like a woman, feeling like a burden and being abandoned. These feelings are ways ALS weakens your defenses, so I raise my shield and fight these emotions because I can. I will not give in to ALS until my last breath.

Now you know what it is, how many suffer and how they suffer. Educate it forward! Thank you!

Sunday, May 23, 2010

Sunday Scribblings - Dragon

The dragon
lying in wait
would not go down
easily in the dark
but he was struck first
and weakened
surprised at the
fierceness of their hearts
as he was slain
in the darkness
of his lair. Later
gutted and skinned
his flesh cut into pieces
and shared. Now the fire
is in us: we are the dragon, the dragon's
strength is ours; we will live, free of dependence.
No more pain,and falls and wheelchairs for
we are made whole in our feast.

15 cases of ALS are diagnosed a day and most live 2-4 years. No time to fight and voices too weak to be heard. Do you know ALS? Educate it forward to be their voices.

Wednesday, May 19, 2010

Can I pull off a Meme Including ALS?

If I were a month, I'd be May which speaks of renewal and it's ALS Awareness Month

If I were a day, I'd be Monday because it's the start my week after a hectic weekend. I love beginnings.

If I were a time of the day, I'd be 10am because that's when I awake and have my coffee, in the fresh mountain air.

If I were a season, I'd be fall because my muscles have been worked in the summer and I'm strongest in fall. Bonus is the tree colors.

If I were a planet, I'd be Saturn because it's unique and beautiful.

If I were a direction, I'd be north keeping me close to God and I love Northern California where I live.

If I were a drink, I'd be a glass of ice tea w/no sugar. Gives me energy when my ALS tries to steal it away.

If I were a tree, I'd be a redwood living long and strong.

If I were an animal, I'd be a dog. They need you and give back unconditional love.

If I were a musical instrument, I'd be a guitar. It's held and strummed with passion.

If I were a fruit, I'd be a passion fruit. Sweet and colorful.

If I were a food, I'd be a pasta. Very versatile and energy boosting.

If I were a celebrity, I'd say Hugh Lorie because he's sarcastic and his mom died of ALS. He could really impact awareness.

If I were a color, I'd be red because it looks good on me, my hair and ALS color.

If I were a book, I'd be a romance novel because I'm a true romantic.

If I were a song, I'd be Stairway to Heaven, a high school fav sung by a crush.

If I were a movie, I'd be Pretty Woman or Dirty Dancing.

If I were a flower, I'd be Jasmine for the sweet smell and climbing vines.

If I were a facial expression, I'd be wonder. I'm in awe of nature and love.

3WW- Dread, Grasp, Pacify

Sara felt the sadness in the room like a heavy blanket, holding her down and unable to move. They all knew Sara had battled so very hard to beat ALS/MND and yet she had lost. The tears that trickled down the side of her face were not of sadness but they were tears of doubt. Had she done enough in her life to make a difference? Did she use her time for a greater good? How will she be remembered? Sara thought she knew the answers and yet no cure had come in time.

Sara's children were so consumed with regret because they thought they had more time. Sara had reached out but it fell on deaf ears of the childhood's that had been stolen. It was too late to pacify their fear's, all she could do is say she loved them with her eye's. Sara had to say goodbye using her computer that held her voice from the past. The Eyemax computer held just words and a voice long ago forgotten. Her children could not grasp Sara's forgiveness or of not having Sara's advice . Sara dreaded the grief that will change them

Then there was John who's love motivated her fight. No computer could touch the grateful love she held in her eye's. Sara knew her love had been equaled in his heart by his patience and loving sacrifices. They were given to each other for a short time but a life changing time, gifts from God to each other. He was proud and thankful for the gift of Sara but he knew this was her call, her time, on her terms. He would be okay and continue their fight to educate ALS/MND to the unknowing.

Sara drifted, remembering her living funeral, surrounded by her friend's and family. Their words and memories were still clear despite the haze of her morphine drip. As she took her last breath in this life, her eye's fixed on John's, she was slowly lifted into the next. Someone had said she was gone but Sara felt she was finally free!

Monday, May 17, 2010

Theme Thursday - Pets

His name was Manny and he was my angel dog. Manny was boxy like a black lab, had the soft face of a boarder collie and the curly ears of a cocker spaniel. He was five and had been neglected by a neighbor's son. The neighbor was a retired cop and brought the dog to his house. He offered the dog to me and my girls because he felt we needed Manny.

I had been told I had ALS five years before we were offered Manny. I was a single mom of two young girls, living in a rented house. The doctors gave me no hope or much time. I could not imagine taking on a dog. But Manny stole our hearts and even the landlord gave his approval. Manny was a good dog and he immediately knew there was something wrong with me. He was always at my side from day one, as I fought to survive ALS/MND.

An example of his wings are many but it was the first time he helped me that started our journey. One day I went to get off the couch and Manny jumped up from his nap to follow. As he sat on his hind legs waiting I had just made my fourth attempt to rise. Manny began nudging me with his nose but in my frustration I ignored his concern. I tried it again and failed when Manny barked at me, while still nudging. I asked him in a pissy voice "WHAT boy?" I saw concern and scratched his neck. He kept raising his head as I scratched and then I got it. I held the arm of the couch with my left hand and I put my right hand behind Manny's head. He was still sitting but he stiffened his neck and legs while I pulled. He held firm as I stood up and in that moment we were a team.

It's with a heavy heart that I must say Manny is no longer with me. He lived for seventeen beautiful years. He watched my girl's marry and even six years ago he gave up his side of our bed to my new husband. I am a very rare case of ALS because most die in 2-4yrs and I am nearing 2oyrs. Through all of my long day's, hormonal teens and falls. Manny's unconditional love remained strong. His ashes will be spread with mine as a tribute to our love and friendship.

15 cases a day are diagnosed with ALS in the US. 2-4 year mortality rate and there is no cure. Brain stops messages to muscles, leaving you trapped in your body and mind is fully aware.

One Single Expression - Tremble

optimistic faith
seeing the light
protected from trembling darkness

Photo: My yard filled with a sunset's streaming light. I could see a perfect little tree basking in the last kiss from the sun. Do you see it? This inspired my cinquain for May's ALS Awareness Month. ALS is known in other countries as MND. (not a great shot with my camera but awesome live)

A cinquain has five lines.
Line 1 is one word (the title)
Line 2 is two words that describe the title.
Line 3 is three words that tell the action
Line 4 is four words that express the feeling
Line 5 is one word that recalls the title

Saturday, May 15, 2010

Sunday Scribblings - Recipe

I've been trying to raise awareness for ALS in May by turning prompts into education. This one was a tad hard but I never back down from a challenge.

Recipe for a Cure

Take a killer like ALS
And educate the masses
Add the ugly truths
Stir in the media
Put in faces of the stricken
And show their hope for tomorrow
Sprinkle with money for research
Heat on high for fast action
Serve ALS awareness in hearty helpings
To anyone who will listen.

15 new cases a day and they die so quickly few are left to fight. Lou Gehrig was a baseball player who had ALS but most don't know what he endured or even know who he was. Brain stops sending signals to EVERY muscle. Walking, eating, swallowing, talking and then slow suffocation ensues. No cure and ANYONE can get it from 16yr olds on up. Now ya know :)

Friday, May 14, 2010

Theme Thursday - Mystery

Sara awoke from a beautiful dream of running through a green meadow. Running until she was exhausted, falling upon the cool grass, watching the clouds play in the vast blue sky. When her reality sank in, she had a moment of sadness cross her face. But quickly she would put on her best face as she called for her husband, John.

John was usually awake earlier than Sara and had already enjoyed his first cup of coffee by the time she awoke. He said "good morning honey" in his usual chipper voice. "Morning" I replied groggily and unintelligibly. He pulled back the covers, exposing her lifeless body and kissed her on the forehead. "Ready?" he asked as he lifted her to her chair. He was very gentle so as not to pull on her catheter. Making sure the seat pad was positioned, her neck brace was okay, as they headed for breakfast. He poured a can of Ensure into her feeding tube as she sipped through her straw the liquid gold taste of coffee.

John had spent the next three hours dressing, bathing and making her feel pretty. Her computer went where Sara went as she used her eye's to speak, making sure he didn't miss anything. He would sometimes lose his cool or skip a bath when she wanted one but normally it was routine. Sara hated strangers coming in to do it but John needed a break from all of it regularly. He need a life too.

Sitting on the deck Sara would close her eye's, smelling and feeling life all around her, grateful to just be. She often said nature and man will find a way to uncover the mystery as to why the brain cannot get messages to her muscles. What caused that gene to be triggered? Her breathing needs a rest with a bi-pap machine during the day that she jokingly calls her Darth Vader mask. Sara had only been sick for two years but she felt hope in the breeze. Someone will solve the mystery of ALS.

I have ALS but this story is fiction. 15 cases diagnosed a day in US, there is no cure and most live only 2-4yrs.

Wednesday, May 12, 2010

3WW- Fear, Ignore, Weightless


My heart is heavy.
I must put on a smile, for
Fear is wasted emotion
That pulls me down.
I feel muscles, wasting away
Under weightless armor,
Buffed in prayers, shining in love.
I know a cure will come one day,
Riding on a powerful steed.
I hear his gallop coming,
In the distance, slow moving
Carrying a cure.

A poem for May's ALS Awareness Month

Tuesday, May 11, 2010

One Single Expression - Reign

Clouds waltz across sky
dark to light casting shadows
spring struggles to reign

Powdered in winter
avalanches drop from trees
will spring ever reign?

We received another 5" of snow yesterday. All we can think of is spring.

Sunday, May 09, 2010

Sunday Scribblings - Courage

Many think that having a terminal illness with no cure makes you courageous. It does in cases of ALS where the disease ravages your body quickly, until you are a prisoner, unable to move. Most people lose one ability after another until the end, leaving no time to do anything but survive one day at a time. I do think I was very blessed to have lived 19yrs with a disease that takes most lives in 1-4 years.

I never thought I was courageous when they gave me the bad news (assuming my time was short) because I had two little girls to raise. I HAD to survive for them, so I took them on adventures and taught them skills they would need later. I was honest, loving and asked a lot of them. I survived 13 years devoted to them and I was thrilled as they each graduated to adults. With a happy outlook at every progressive stage we lived live fully. Now they resent my living and moving away to the mountains(even though they are grown and married). They feel robbed of a normal childhood and I owe them to live close. Growing up in fear of losing me has effected who they are now (along with DNA). They love me but they don't get too close. The real courage is living without their appreciation or gratitude.

I thought I was most courageous, when my youngest graduated, in seeking a male companion on the internet, after 13 years living with ALS. I put myself and prognosis out there expecting rejection but instead found an amazing man. He loved me and married me, on a beach in Kauai, for the duration. He really has no idea how hard it may get but he has made a courageous choice. His courage made mine stronger and a blessing.

I guess I'm saying courage can be found in the big things and the little things. Everyday that we awake and start our day we are making a choice to live life fully and with courage. It may not turn out that way but we keep trying. We can reach out to someone in need, be grateful and love fully. That's courageous!

May is ALS Awareness Month, feel free to ask me anything.

Wednesday, May 05, 2010

3WW- Escape, Hum, Vibrate

Hope in Living with ALS

The dark, shadow of the reaper follows,
To remind, frighten, slink in the darkness
For too many, familiar faces; here and far
Living faithfully, hopefully and strong.
The heart of family, supports, lovingly,
The alone, grasp for support, seeking help
From the only ones willing to reach out,
Out, of the dark, as danger draws nearer.
And their voices vibrate in gratitude
As they hear God's voice humming in their hearts,
Assuring them of his presence and light.
When the cure comes, willingly, they escape,
Reapers path, for now, and life can reshape.

My first Sonnet and written for May's ALS Awareness Month.
Dedicated to my fallen warriors Helen and Pam.

Monday, May 03, 2010

One Single Expression - Enigma

What is ALS?
all your muscles cease to work
Who gets ALS?
anyone and often
a silent enigma kills

A Tanka for ALS, I hope I used it right. Educate it forward :)

Sunday, May 02, 2010

Sunday Scribblings - Event

I had been sent to UCSF after 4 years, 5 doctors and a Multiple Sclerosis diagnosis. I took the MS diagnosis seriously but my symptoms were slight I simply went on with my career path and being a single mom. The last doctor did a new test (EMG), on my first visit, and said "I don't think this is MS Tammy." I was relieved and asked "then what do I have?" She had said that she preferred I go to UCSF before giving me what her suspicions were. Relieved, I grabbed a girlfriend for a fun day in San Francisco.

I sat on the white paper, covering the exam table, when combined with my HUGE paper gown made loud noises every time I moved. The room was tiny and I felt it getting smaller as I grew impatient. UCSF was apparently a teaching hospital so I was examined for an hour by a resident, then an hour by the head neurologist. My poor friend was still in the waiting room as I grew anxious to get this done.

They came back into the room together. I noticed the young resident was more serious and had a hard time making eye contact with me, as he shrunk into a corner. I found it funny to see his demeanor change in front of his boss. The head of neurology was not scary to me but he was very gentle and caring when he spoke. He said "Tammy, after examining you and your previous records we have concluded that you don't have MS, you have ALS."

All I heard was no MS but when it sank in I asked "so is there a cure for ALS?" and he looked down and said softly "no, there's not." "Will I get worse?" I asked anxiously. He replied reluctantly "Tammy, ALS is a terminal illness." My mind could not connect no cure and terminal but my body did, as I felt flush with anxiety. I looked him in the eye and strongly asked "how long?" He said "that's hard to say, but based on the last 4 years you have 7-10 years, including the 4 years." My mind raced like a fast moving slide show. Jumping from my young girl's, to an unfit ex-husband and my career. I took a long deep breath.

Looking at the very uncomfortable resident, then back to the doctor I blurted wearily "how will I die?" My new doctor, who I found out later was an ALS specialist and would get ALS in 2004, tried to avoid that question. I said "listen, I have two young girl's at home that need me, so I need to know now how this will go." He again reminded me that I was given a lot to process and on my next visit we can discuss questions. Almost too calmly I said "no, I need to know now."

All he would say is all my muscles will weaken making it hard for your body to function. I'm not sure what I said after that or even what he said, but I found my body went through some sort of acknowledgement and goodbye. I went to get my friend with mind racing and body moving on its own.

I said "I'm so sorry that took so long" and she jumped up asking "well?" I must of looked zoned out but said sarcastically "well it's not MS" and she smiled saying "what a relief." As we walked down the hall she said "Tammy, where are you? anxiously she asked "what did they say?" I replied calmly "I'm going to die."

I insisted on driving home, an hour away, but I don't remember the drive or anything I may have said in the car. I needed to figure out how to tell my babies, I needed my babies.

May is ALS awareness month. I chose to write about my biggest life changing event, but I'm happy to report this event happened 15yrs ago. 15 cases of ALS are diagnosed every day in the US and most live only 2-5yrs. You become trapped in your body, losing every function except sight. Your diaphragm will, in the end, cause you to suffocate your mind fully aware. I'm on a campaign to have my friend's pledge to educate one person who does not know ALS. Having that friend educate it forward. Do you know ALS?