I've been going to clinic every three months for the past 2 1/2 years. I hate going but always come away having learned something. It's only a 45 minute drive for me though, not sure I drive 12 hours round-trip for it. Years what I wrote after my last Clinic.
Clinic Day
Most pAls (person with ALS) have a love/hate relationship with clinic days, and I am no different. My 3 month clinic was this week.
It is mentally and physically exhausting to prepare, attend, and focus for these all afternoon events. Simple things like how long can I go without going to the bathroom become big deals!
Good news is relative, like my breathing has only declined by 4% instead of 10%.
But I am lucky. I love my team.
First they take the vital signs. To weigh me I am asked to drive my monster wheelchair up on a huge scale. The result is I weigh 584 pounds.
I'm not sure how this translates into real weight, as my knees became lodged under the table and applied even more pressure on the scale. Oh well, they seem happy with the result!
The wheelchair guys always have some adjustment they make to help me feel more comfortable. This time they added A switch I can punch to adjust my chair since my fingers and hands no longer work.
The speech/language lady had tips to help me swallow more safely so that I can keep eating real food. This is important because eating has become a challenge to not choke and scare the crap out of me and my assistants.
The pt and Ot advise on the ever changing methods to transfer semi-safely with legs that won't support my weight anymore, 584 pounds is a lot, you know.
They are very happy to hear I am still getting in the pool 4+ times per week.
Pete, the ALSA rep, is there to offer up respite funding, new fancy ramps and shower chairs that tilt and support my head.
The respiratory therapist has ideas to adjust my breathing machine which is now needed 10+ hours per day, and exercises for breath stacking and daily use of cough assist machine so that my lungs which are trying to collapse will function better.
Then my doctor comes in to summarize. It's 5 o'clock now and she's had a long day. I'm her last patient. The first thing she says is, "I haven't had a chance to say f*ck all day". Oh, she knows me well at this point! She is very smart, trained at Duke University under one of the most prestigious ALS doctors, and is quite blunt and to the point. I appreciate this.
The best news she can offer is my breathing is holding steady at 68%. She understands why I don't want to have the feeding tube inserted yet, as I still love my time at the pool. She agrees that beginning the Lunasin trial is a good idea.
She has ideas about making trips to the bathroom easier by having them hoist me in the air and let things fly into a large bucket. We have a laugh about this, because it's important to keep a sense of humor with this disease. I suggest that she give it a try first! We both find that this is a good time to use the word, f*ck.
Rob and I load up and drive home. that wasn't so bad, we both agree. I'm ready to get home, use the bathroom - not ready for swinging in the air method yet, and relax with some red wine. We will do it all again in three months. I'm not ready to quit!