Claudia's ALS Journey

I'm a single mom diagnosed with ALS (Lou Gehrig's Disease) and a primary immune deficiency. I have three children, all of whom have Fragile X Syndrome and autistic spectrum disorder (ASD), one of whom still lives at home with me and who has struggled with his own set of physical challenges in the course of his short life.  He is homeschooled due to his own issues with immunity.  His last year in public school (2nd grade), he missed more than half of the instructional days due to illness.  How much healthier he is now that he is not going to the "germ soup" of school!!

I have always had a passion for helping others and that passion led me to Emergency Services. I always said "I don't wish bad things to happen to people, but if they do, I want to be there!"  I was one of those persons who runs in when everyone else is running out.  As a First Responder I had found my calling! 

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While working (and volunteering) as a First Responder, I had another full-time job:  advocating for my children.  I learned as much as I could about Fragile X Syndrome and autism and I became a resource person for families with newly-diagnosed children.  I learned the "ins and outs" of IDEA, Article 7, ADA, IEPs, Section 504 and a whole slew of other acronyms that I never wanted to learn.  I made literally hundreds of friends from all over the world online via the Fragile X Listserv.

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Many days, after working all night (12-hour nights in the emergency department or 24-hour shifts on the ambulance/fire department/helicopter), I spent all the next day at the local children's hospital for doctor's appointments or therapies, or at school in 'case conferences'.  It was a busy life but one I loved.

I began having slurred speech in October 2004. In August 2005 I was diagnosed with ALS.  Prior to my diagnosis, my life revolved around my kids and my job as a flight paramedic/RN.  My ALS progression has been slow and I was able to continue flying and working in the ER through 2006.

I'm no longer able to work outside the home because of my illness. Once considered “articulate,” my speech has deteriorated to the point where waiters and sales clerks presume mental impairment and speak to any adult accompanying me preferentially.  My voice is weak and sometimes I can barely speak above a whisper.  I’m frequently very short of breath. My balance is unpredictable and my gait is stiff and jerky. I use a power wheelchair for outings and in the few rooms of my home that are accessible.  I have muscular fasciculations (little "twitches") all over my body and I have joint pain, muscle pain and spasticity.  I use an AVAPS (non-invasive ventilator) each night to allow my diaphragm to "rest".  Sleep is a difficult issue and I need (but don't have) a memory-foam adjustable bed so that I don't have to change positions to get comfortable and breathe easily.  All my symptoms are progressive and eventually, while mentally alert and with intact sensation, I will become totally paralyzed.  At that point, the choice becomes "life on a ventilator" or death.

My ALS progression is VERY slow.  Most people with ALS only live 3-5 years from diagnosis.  The majority are wheelchair-bound by the 4 year mark, if they are still alive.  My slow progression is a blessing…..and a curse.  The blessing is obvious:  more time to spend with my children and friends.  The curse is a little harder to see, unless you have seen someone progress through the stages of ALS.  I will pass through the stages of loosing functioning in slow-motion.  With the loss of functioning comes an increased need for resources that I simply don’t have…financially and logistically.

I treasure the time I have to spend with my children now.  My older son comes as often as he can (he went to live with his father in August 2006).  My daughter visits too, although her disabiltiy prevents her from driving.  My youngest misses the other two terribly!

I spend time each day snuggling and watching TV with my youngest.  He loves to cuddle up in bed and spend some "mommy and me" time.  This is one of the few activities that are left that we are able to do together.

I am grateful to God for Amy, Christopher's caregiver, who lives with us.  Without her, I dont' know how we would survive!  She is AMAZING!

If you’d like to get to know me better, I would like to invite you to become one of "Claudia’s Champions"! Please contact Vicki McMeans (director@claudiaschampions.com) for more information on how you can get involved!