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May is ALS Awareness month "... the costs associated with ALS were greater than other neurological diseases."
A diagnosis of ALS has the potential of bankrupting a family due to the high cost of equipment and specialized care. After visiting my pulmonary doctor this week, I was prescribed a cough assist device. My expiratory breathing function has diminished, and this device will help. It attaches to a mask that I can wear as needed.
When I got home I looked up the cost of these machines, $3,500 or more new. Used still near 2K. That's a lotta cheddar to cough up (pun, yes please!) 💵 💵 💵
Insurance only covers so much. Medicare helps, but no with in home assistance. The uncertainty on life expectancy makes this even more difficult to decide how much is too much.
I'm starting to feel my life has a price tag attached to it. 💲😷🙏⏰⏳💜💙 #ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded #randibattlesals #nooneescapesunscathed

ALS- Amyotrophic Lateral Sclerosis- Lou Gehrig’s Disease #alsfacts #als #lougehrigsdisease #findacureforals

May is ALS Awareness month.
This picture was taken the last time I was able to watch my nephew Lucas, the end of last year.
ALS has turned me from babysitter to babysit-ee. I miss our fun times together. His past birthday I watched as he played skee-ball (my all time fav arcade/boardwalk game!!) and I could not join in. The balls were too heavy. We did shoot some aliens in space invaders 👾 since I could rest my arms on the controller 👾✖👾✖👾✖ ALS takes so much from each of us who experience this horrible, fatal disease. Research for a cure is so underfunded due to it being an #orphandisease
Meaning less than 200,000 nation wide are living with diagnosis. It's not profitable enough for big pharma to invest into, yet we still suffer. We still die.
This is why the #DontTalkAThon2018
is so important to donate to. Without donations not much is done in way of finding a cure, let alone finding a reason behind ALS. Will you donate today?

#ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded #randibattlesals #nephewsarethebest

May is ALS Awareness month.
Shhh… can you hear that?
It’s thousands of Project ALS supporters coming together to create SILENCE while raising funds for ALS research. Join us on May 20 at 3pm for our #DontTalkAThon2018 as folks across the country take 1 hour of silence to honor those who have lost their voices due to ALS.

I will have no choice over my future silence, but you have a choice now. Choose to not sit by silently allowing another day to pass without supporting ALS research.

Please help me support Project ALS by making a donation through my page ^^link in my bio^^^. The process is fast, easy and secure. Thanks so much for your support!

#ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded #ProjectALS #DontTalkAThon #ALSAwarenessMonth #endALS #randibattlesals

May is ALS Awareness month.
"They look like good strong hands, don't they" quoted from Rock Biter in #theneverendingstory when the Nothing has taken everything.

Flashback photo to the summer of 2016. I was playing softball on a woman's league, actively practicing yoga, and enjoying a larger yard to garden in... then the Nothing (ALS) crept into my life.
Something was off, my shoulder felt weak and not in an alarming way, but thinking my years of activities were catching up to my aging (not old! more like a good wine 😉) body. Maybe a torn rotator cuff? Easy fix right?! WRONG! Fast forward Sept 2017 to my diagnosis of ALS. Three neurologists confirmed after an entire year of intrigue.

Here I am acting a fool (as usual 😜) laid out on the grass. This picture was the last time I was able to play ball. This summer I will get to watch from my wheelchair, cheering on the others with the voice I still have left. Go team #save2ndbase

#ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded #randibattlesals #thenothing

May is ALS Awareness month

Effects Speech » Limits Swallowing » Difficulty Breathing » Malnourishment » Loss of Independence » Depression » Pneumonia
Muscle weakness and atrophy spread through out the body as the disease progresses. Individuals may develop problems with moving, swallowing (dysphagia), speaking or forming words (dysarthria), and breathing (dyspnea). Although sequence of emerging symptoms and rate of disease progression vary from person to person, eventually individuals will not be able to stand or walk, get in or out of bed on their own, bathe unattended, or use their hands and arms.

Individuals with ALS usually have difficulty swallowing and chewing food, which makes it hard to eat. Risk of choking increases. PALS also burn calories at a faster rate than most people and tend to lose weight rapidly, which can lead to becoming malnourished.

Because people with ALS usually retain their ability to perform higher mental processes such as reasoning, remembering, understanding, and problem solving, they are aware of their progressive loss of function and may become anxious and depressed.

Individuals with ALS will have difficulty breathing as the muscles of the respiratory system weaken. They eventually lose the ability to breathe on their own and must depend on a ventilator. Affected individuals also face an increased risk of pneumonia during later stages of the disease.

#ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded #randibattlesals

How many people are affected by ALS?? #mayisalsawarenessmonth #findacureforals #alsfacts #getinformed

May is ALS Awareness month
---------------------------------
Sam Shepard, movie actor and writer (among many other titles), died last year due to complications from amyotrophic lateral sclerosis.
ALS does not discriminate with age, race, gender, or status.
No one is immune!

#ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded #samshepard #nooneisimmune

Photo by @bruce_weber

ALS has definite symptoms and is easy to diagnose.
FALSE!! ALS can be very difficult to diagnose, as no single test can provide confirmation. It personally took a team of doctors, including a Rheumatologist and Neuro-muscular specialist, over a YEAR to reach a diagnosis.
Early on, symptoms and exam findings can be misleading since each pALS (Patient with ALS) presents differently.

My doctors ordered ✔ 4 MRI scans, ✔ 3 EMG nerve tests , ✔ 2 X-rays , and a ✔ lumbar puncture (in a pear tree!) to test spinal fluid. Many rounds of blood draws and other lab tests were ordered to rule out diseases that can mimic ALS, such as Lyme's or MS.

#ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded #randibattlesals

May is ALS Awareness month.
Amyotrophic lateral sclerosis (ALS) is a RARE neurological disease that effects the nerve cells (neurons) responsible for controlling voluntary muscle movements like chewing, walking, and talking. This disease is progressive, meaning the symptoms get worse over time.

#ALS #alsfacts #letsfindacure #alsawareness #mnd #lougehrigsdisease #factsnotfiction #nocure #underfunded

Meet the Iron Horse - also known as Lou Gehrig.
Lou played 1st base for the New York Yankees until 1939 when he took his fight off the field and to ALS Unfortunately he passed away in 1941. #history #ALS #ALSFACTS #testyourknowledgetuesday #lougehrigsdisease #lougehrig

May is ALS awareness month. What better way to end it then with a little info. This year I'll be walking in my 4th walk in the fight against ALS and I couldn't be happier that this year more family and friends will be joining me!
#defeatals #ALS #alsfacts #iwalkformygrandpa

Updating Daily! #AlsFacts

I posted this on my FB early #ALS #Alsfacts #icebucketchallenge

#alsicebucketchallenge its not just about dumping ice cold water over yourself. Its about #awareness #savinglives its not about how much water is "wasted" or your water bill its about #selflessness #helpingothers #makingadifference. Even if you dont do the challenge, tell someone about it, maybe they will. TALKING about it helps raise awareness.

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