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!

17 comments:

Pia Savage said...

Oh Tammy. Thank you for being so brave and for writing these amazing and yes heartbreaking posts

You are somebody to be admired, totally

anthonynorth said...

Educating us like this is so important - and no doubt so difficult for you. A true warrior.

Tabor said...

I WILL Tammy. You have made me a warrior because I knew nothing about this disease until I met you on blogger. Thank you!

b said...

I keep learning from you.

b

Andy Sewina said...

Hi Tammy, I think you're Amazing!

Jay Thurston said...

Wow Tammy. Very real and raw writing, this piece lays it all out there, definitely succeeds in educating the reader about ALS. Thank you for educating us, I cannot begin to understand how to draw strength as you have. Fight it tooth and nail, and I pray a cure comes.

bunnygirl said...

Keep fighting, Tammy, and thanks for your efforts to spread the word. Without accurate knowledge, nothing else is possible.

Americanising Desi said...

thank you for the help in makin us learn!

ThomG said...

You are a saint for providing this look at ALS from the inside-out. Thank you for your bravery and you candor.

Timothy P. Remp said...

Wow.. Thank you for your honesty.

-Tim

gautami tripathy said...

I take my hats off for you!

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bluepapercranes said...

you are an amazing woman. thank you.

Lilibeth said...

Thanks for telling your story. So many would hide away and feel pathetic...and I'm not saying they don't have a right to, but what you do in facing the monster head on will be more useful in helping others that you may never meet, perhaps even those born to your own family years from now.

pieceofpie said...

hi tammy, this is a hard read to go there to that place that awaits you..tho i thank you for this brave [can i say that without sounding pretentious] post to write it to think it to live it... to let us know, let us share in yr life...amazing what love and a strong spirit can accomplish...

Forgetfulone said...

You are the bravest person I know. I pray there is a cure someday, hopefully in time for you. Thank you for giving us the straight truth.

Thomma Lyn said...

Tammy, you have the heart of a saint and the courage of a lioness. Your honesty and your spirit humble me. You are a heroine, a blazing beacon of heart-light.

Jingle said...

inspiring post!