An Update from Kathy

September 7, 2007

Dear Friends and Family –

Let me start by telling you that Earl received good news from his CT scan in August:  there is currently no evidence of active lymphoma anywhere in his body.  He will have another CT scan in six months – and every six months for the rest of his life – but for now, this is the news we hoped for.  Thank you for all your kind thoughts and concern – they helped us through a frightening period of worry.

Well, suddenly it’s September, my favorite month.  My summer blew by in a blink of an eye, and it feels like it’s time to send you all an update on my life with ALS.

I had the great good fortune to have my niece Meghan staying with me this summer.  She has been so helpful and kind – and funny and smart and beautiful.  The gifts she brought to me and Earl (time, humor, care) were priceless, and we will miss her now that she is back at college.

An old joke says that when you ask someone how they are, after a certain age you get an organ recital.  Because ALS has such a bewildering effect on my body, I can’t stop myself from describing to you my “new normal” physical condition. 

·         My left hand (where everything started) has lost most of its utility.  The index finger will still type (yay!), but the rest of the fingers are pretty immobile.  The little finger and the ring finger curl in toward my palm; the middle finger stays ramrod straight – giving the whole hand a somewhat obscene (or at least ill-mannered) appearance. 

·         My right hand has lost most of its grip strength.  The fingers will still type, but I can’t hold a newspaper – and even my plastic silverware is getting heavy to hold. 

·         I’m no longer walking, not even a few steps with a walker.  I can stand for several seconds – long enough to help with transfers from the bed to my chair – but I’m not sturdy enough to stand on my own, so I need someone to help anytime I want to move from my wheelchair. 

·         I’ve grown an enormous belly – a younger woman with this shape would be six or more months pregnant.  My doctor says it’s the result of severely weakened trunk muscles – my guts are heavy and they are falling out.  This should be the least of my worries, but I find it is one of the most offensive parts of the physical assault ALS is waging.  I am trying to make peace with it by imagining that it gives my lungs more space as they try to breathe – I’m not even sure that’s true, but it is the only positive spin I can put on this development. 

·         My forced vital capacity (FVC) is now at 61%.  FVC is a measure of how much air you can take in, force out, and then quickly bring back into your body.  The breathing you do during the test is not at all like regular breathing – they clamp off your nose, put a hose in your mouth, and focus on how fast you can empty and fill the lungs – but it provides a standardized measure that the doctors use to determine whether you are a good candidate for any studies or surgeries they might do.  An FVC of less that 60% rules you out of some studies; an FVC of less than 50% makes any surgery high risk. 

·         My voice is raspy and weak (a result of the diminished breath support), and my speech is getting thicker and more clumsy (a result of some atrophy in my tongue and lips).  It’s worse when I’m tired or when I try to talk at my normal pace. I hate sounding like a drunk slurring her words and I also hate speaking slowly – but like it or not, I get one result or the other.  

That’s the news about my health and physical status.  Let me give you an update on other facets of our life. 

I have hired a home health aide who comes every day to help me with range of motion exercises, stretching, bathing, dressing, and other personal care.  I’m pretty much past the point of being able to be home alone, so having her here makes it possible for Earl to go to work.  Over the summer, she came just in the mornings (since Meghan was at her job from 8:00 until noon); now she will be here all day.  Home health care is expensive, but Earl and I are fortunate to have long term care insurance, which covers much of the cost.   

I have stopped going to yoga classes – it was simply too hard to get into the studio and, once there, too hard to move me from pose to pose and get me back up from the floor.  My personal care assistant helps me with a few poses each morning, hoisting me off the floor with a Hoyer lift when we’re done.  In addition, my yoga teacher will give me weekly private lessons; I still want instruction so that I can maximize yoga’s benefits for my body and soul. 

I continue to use the Courage Center’s therapy pool, a swimming pool in which the water is kept around 94^o. When I exercise there, I have the blessed experience of standing upright and walking.  Once the water is up to my ribs, it provides enough support and buoyancy to allow me to stand straight, walk slowly, and remember what biped life is like.  This is hard exercise for me these days and it’s tiring to my body, but it is nourishing for my soul.  

The friends and family members who make up Kathy’s Circle have been helpful in so many ways.  We have a new ramp to the back door, we have wooden walkways in our garden, we have beautiful flowers in our yard, we have delicious meals brought to us every week.  None of this would happen if you were not so kind and generous – and we thank you from the depths of our being.   

Earlier this year, Kathy’s Circle met to lay the foundation for a coordinated approach to providing the care I need.  A computerized database will track my needs and match them with the help people are willing to provide.  The hope is that an organized approach to sharing the care will keep any one friend from bearing too much of the load, allow me to keep in contact with the broad array of wonderful people in my life, give anyone who wants to help something concrete to do, and minimize the feast or famine outcome that sometimes occurs when people bring food.   

I’ve said it many times before, but I can never say it enough:  Thank you.  Thank you for staying connected to me and Earl.  Thank you for the random emails, cards, and letters that, in addition to sharing your news, remind me that I have known many amazing people in my life.  Thank you for sticking with me and Earl, helping us through what is often a sad and tiring journey.  Thank you for letting us talk, or cry, or laugh, or rage – or even to forget, for a little while, what ALS is doing to our dreams.  Have no fear:  we’ll make new ones. 

I hope you are well.  I’d love to hear from you. 

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