I had my first visit yesterday at the ALS Multi-disciplinary Clinic at IU. It was a LONG appointment, starting at 8 AM and lasting until 1:30 PM. My friend, Sharyll, went with me and we decided that, next time, we'll either pack a picnic to take along or bring refreshments for all the staff we get to "visit" with! The respiratory therapist (RT) was out sick, so the clinic nurse-coordinator did my forced vital capacity (FVC). It was 120% which is great! That said, I started out with an FVC of 132% last October and it was 121% just last month, so I am seeing a decline. Still, things are looking good with my diaphragm strength. Dr. Pascuzzi (the ALS clinic director and my neurologist) saw me next. He felt like the exam was pretty good, as well. We discussed the symptoms that I am seeing...mostly increased fatigue, slight weakness on my left side with very slight left foot-drop. We discussed my sleep study (done last month at IU) and my diagnosis of Obstructive Sleep Apnea. He was equivocal about whether I would need a CPAP or BiPAP to treat the apnea. I hope to hear from someone about the decision later this week. I am eager to get some sort of "PAP" to help me get better rest. Dr. P's "take" on things was "ALS causes fatigue, sleep apnea causes fatigue. BiPAP (or CPAP) should help with both" We discussed the current clinical trials that are going on at IU. Two studies are finishing up (and are not enrolling new patients). They are studying minocycline (an antibiotic) and myotrophin. The new study starting is going to look at the effects of HIGH (2-4 GRAMS DAILY) dose ceftriaxone (Rocephin). This particular study sounds intense, requiring central venous access via a Hickman for the duration of the year, numerous clinic visits, several spinal taps and the twice-daily infusions of the ceftriaxone. Deciding whether or not to enroll in research studies is a difficult thing for me. I've never been faced with a fatal medical problem for which there were virtually no treatments...and ALS is such a disease. I can do the "cost-benefit" routine until I am blue in the face, but the bottom line is, with a "trial".....THERE IS NO CERTAINTY of ANY BENEFIT. It kind of makes the risks inherent in the trial that much more frightening. I met with the speech therapist(ST) and she feels that my speech is very weak with some laryngospasm and the obvious articulation difficulties (dysarthria). I shared with her that I basically do not use the phone anymore, but use an internet relay service to make business calls (I go to the web link, type in the number I want to call, an operator dials the number and explains the relay, and then the operator "talks for me" and types in [for me to read] what the person I have called is saying). The cool thing about the relay service (as opposed to using the basic TTY relay service and a TTY phone .. which I now have) is that you can add emoticons to your text to help the operator add emotion to what you are 'saying'. The ST (a super nice lady named Dawn….I always “hit it off” with STs!) feels that a voice amplifier would be of great benefit for me. She has recommended a device called “CHATTERVOX”. Basically it is a boom microphone/headset that attaches to a speaker that I would wear around my waist like a “fanny pack”. I’m not sure I’m emotionally ready to use something like that full-time, but I do know that my speech has begun to significantly affect my life….any speaking that isn’t face-to-face in a quiet environment is very difficult and exhausting.
The nutritionist was also there and we discussed my swallowing (along with Dawn, the ST). I am having choking (coughing) almost every time I eat or drink. I can no longer chew gum (just can’t keep the gum and my saliva all in my mouth!). I am definitely modifying my diet to accommodate my swallowing. Smaller bites and moist (no dry crackers!) food is a “must”. Drinking from bottles or cans where I have to extend my head back causes the liquid to try to “go down the wrong pipe”…They recommended a “Nosey Cup” (a cup with the side cut out so that you don’t have to tilt your head back to empty the cup). I have some trouble swallowing pills and I joked that gummy bears go down great, so all meds should come coated in gummy bears (a trick I am using to get pills into Christopher with GREAT success!). And here is every woman’s dream: hearing from the nutritionist/dietician that I SHOULD NOT attempt to loose ANY weight AT ALL! She said, ALS is a disease of muscle-wasting and the first thing that you loose when you loose weight is muscle…so NO DIETING! LOL. If only I hadn’t given away ALL of my “fat clothes”!!!! I met with a physical medicine physician, the occupational therapist (OT), the physical therapist (PT) and the durable medical equipment (DME) specialist. The great news there is I don’t need much from any of them right now. The general consensus was that I should avoid wearing “flip flops” or sandals that don’t have a heel just for the fall hazard, but I don’t need any orthotics/braces for the mild foot-drop/left leg weakness! I met with the social worker (Abbie) and we talked about all the REALLY hard issues that seem to come with this: work, finances, SSI/SSDI, end of life decisions, hospice…. I have resigned from my RN job at Hancock. I could no longer continue to work that many hours (combined with PHI it was sometimes 50-60 hours a week). It is only a matter of time before I cannot fly anymore. THAT makes me sad. I LOVE my job and I LOVE flying. It is my dream…. But I want to be able to spend “quality” time with Christopher before I am too incapacitated to do so and I want to be SAFE in the performance of my job, and I realize that the time is fast approaching when I will have to make that decision. The implications are financially enormous. I am checking into/applying for all the government programs (SSA, Medicaid, Section 8 housing) that I can….while I am still working there is little available. Once I quit work there are more services available to me and Christopher, but obviously, the paychecks will STOP and with lag-time in applying for services, I am apprehensive about what the interim will hold. ON THE BRIGHT SIDE: tomorrow we are driving down to Brown County, Nashville, Indiana. We will take in the fall sights at Brown County State park and even spend the night in a state park cabin at Abe Martin Lodge. We have talked about making a fall trip to Brown County for many years, and finally decided that the time had COME. This time next year I may not be able to hike the trails! So NOW is the time!!! I’ll post pictures soon! Love, Claudia