This is a blog about my ALS journey. The journey is different for every person diagnosed with ALS. The rants are mine alone. Some people have their act together more than I do. After my last post, some readers expressed sadness. I, too, am sad sometimes so you will see it here.
Last post I was upset by the reality of getting a tracheotomy. My forced vital capacity (FVC) fell again so I was being proactive and asked about getting a trach. I do not need one now but learning the facts were upsetting. Basically, the facts are that I cannot afford around-the-clock care that it necessitates. If you have one, I’d like to hear about your experience.
My upper body strength is slowly fading. I cannot use the same equipment to successfully transfer. Using the toilet now required removing the seat riser that was added just a few months ago. The grab bars and bidet seat are useless to me at this point. While I wait for home health to send a therapist for training on the Hoyer lift, we have put the gait belt to use. When I do not have the upper body strength to pull myself up, my caregivers help by pulling me up with the belt. I am also using my feeding tube to supplement meals. I lost 5 lbs. and that is something ALS patients want to avoid, even overweight ones like me.
I found a sewing angel to alter the men’s tank t-shirts I have been wearing due to the feeding tube. I had to stop wearing the tube belt after getting friction blisters. And that bra-less rebel I had become felt brave enough to put on a bra. (Remember that feeding tube comes out of my stomach directly under my left breast.) Surprisingly, it doesn’t bother me so much. In fact, it practically feels normal. I’m sure summertime and hot temperatures will be the true test. We are also going to do a test run on jeans that will open in the back. If you don’t look at my butt, I won’t look at yours.
Now that I have bored all of you with my latest status report, I want to discuss something important to me — The Walk to Defeat ALS on April 21, 2018 in Raleigh, NC. Last year Team Kathryn raised over $7,800 for ALS. (I also walked in NJ.) This money helps fund the clinic I go to, allows me to apply for grants twice a year for medical necessities, funds research to find a cure, and does so much more for everyone suffering with ALS. I need your donations to break last year’s total. In fact, right after I post this I’m raising my Team’s goal to $7,900 because I have faith in all of you. Your donation is also tax deductible. You can support Team Kathryn in a number of ways: (1) donate; (2) donate and walk to raise awareness; (3) make your own page to share with friends and raise even more money. Some of this is confusing so don’t be afraid to ask me for help. If you want to walk, you should sign up. If I don’t send you a welcome email, then you didn’t sign up to walk or something went wrong.
HELP ME REACH MY GOAL!
You can find my Team Page at this link: ClickHere