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| Hanging out! |
These updates are difficult and yet enlightening because they require honest reflection and assessment. I consider our daily routine, recent challenges, and differences in his needs. In regular life, I just manage the day and don't really look at the bigger picture. But, occasionally it's important to pause and consider the ALS progression.
Just a reminder, ALS progression is unique to the individual. Although there are patterns to the disease based on where it first manifests and the speed of progression, everyone's journey is different. Not everyone gets every symptom; Patrick has muscle cramping and spasticity, but only about 30% of ALS patients have these issues. He's just one of the "lucky" ones, I guess. We passed the five year anniversary of his diagnosis in December. The average life expectancy for ALS patients is 3-5 years so his progression is slower than most.
DME (Durable Medical Equipment)
Until ALS, I had never heard the acronym DME, let alone know what it meant. I guess it's more of an insurance term because it's referenced on most of Patrick's paperwork. We use many items that fall under DME. Yes, we are quite dependent on equipment, machines and technology. For us and many ALS patients, DME is where medical costs really add up.
Recently, we met a couple at the movie theater. The husband was in a power wheelchair. We sat with them in the disability section and chatted after the movie. His story was that he had been in a car accident and broke his back, leaving him paralyzed. She pointed out that Patrick had a really nice chair. After the accident she said, " I realized how important DME was going to be." Sadly, she also found out that his medical insurance had a DME lifetime cap of $25K. I thought about this - boy $25K - that doesn't cover much and wouldn't cover the cost of Patrick's chair, not to mention all his other DME. Off the top of my head our DME items include his power wheelchair, hoyer lifts, walkers, ventilators (trilogy), cough assist, suction machine, Tobii (speech generating device) etc. etc. Let's just say we've gone WAY over $25K. There is no "point" to this story, other than to say I am grateful we don't have this cap.
I'm not a fix it person... I have tremendous respect for the tinkerer, but it's just not me. So, the upkeep, knowledge, maintenance and trouble shooting on all the DME items are a source of stress for me.
Recently, I was transferring Patrick in the battery operated lift from the shower chair to the bed. As I lowered him onto the bed, the lift stopped with Patrick dangling in mid-air. In the moment, I thought, "ok, we'll figure this out and thank goodness he's hanging over the bed." I used "The Google" (as my mom calls it) and downloaded the owner's manual. After a bit of time, I determined how to lower him onto the bed with the emergency release. It's only later that I thought, "holy cow that could've been bad." I figured out the next day, that the battery was dead and no longer holding a charge. Fortunately, I was able to get a replacement battery through the ALS Greater Sacramento loan closet. Technology dependence has it's downside.
I'm not able to defer these troubleshooting jobs, its just me and things have to be fixed. I've developed a fairly comfortable relationship with the following items: krazy glue, rope, duct tape, velcro and zip ties. So, when Patrick's power chair controls broke off recently, I used a zip tie and then krazy glue to put it back together. Seems okay, so far. It's not covered under Medicare and they run $1,000, so I'm hoping it will stay together.
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| Broken controller held on by temporary zip tie. |
Mobility
At this stage from head to toe, Patrick has very limited mobility. Starting at the top, his neck muscles are extremely weak. He is a bit like an infant where you have to cradle his neck during transfers or when rolling on his side. He leans left and his head needs to be turned straight throughout the day. In bed we add a pillow to keep his head up right. His ear often gets folded and has developed a bit of a callus.
Throughout the day, I shove his shoulder to straighten him out. The new lateral extensions on his chair help his upper torso to stay in place, but they can't help with his head and shoulders. His arms, hands and shoulders are completely immobile. His shoulders are bony with significant muscle atrophy. We changed out the back cushion with an "air cushion" type which allows for greater comfort and support. This cushion combats the bony points that lay against a back surface. Pressure points are a common problem with the lack of mobility and muscle atrophy.
With his core muscles deteriorating, throughout the day he slouches and sometimes we put him all the way back in his chair to scooch him back in the seat. When transferring, it's important to get him straight in the lift so that he starts straight in the power chair. Adjusting his body after he's placed, is limited.
His legs and feet are now showing signs of the disease. We elevate them in the evening to reduce fatigue on his knees. His ankle is starting to curl which occurs due to the muscle atrophy. The addition of the hip extensions keep him in place and his legs straight. His remaining strength in his upper legs, allow him to push back in the chair. The lower leg muscles have thinned and lost much of their strength.
With a lack of mobility and muscle definition we work to keep him comfortable. We use pillows, blue booties and blankets to cushion him. When using blankets you have to adjust them so they don't weigh heavily on his feet and ankles. With the ankles and feet being weak the weight is uncomfortable and can cause sores on his toes.
The physical therapist has prescribed range of motion exercises. We started these a few years ago. Initially, he used his own strength to complete the exercises, now the movement is entirely done by me. The goal is to avoid frozen shoulder and to keep ligaments moving.
There is an increase in spasticity and clonus. When he coughs, he often becomes rigid and shakes. This makes transferring harder and on a couple of occasions he nearly slid out of his chair. These symptoms are exasperated by stress and can be extreme. We've had some close calls but fortunately no permanent damage.
It's sad to reflect on all these changes. The loss of movement is horrible and creates a whole new list of issues. We work to combat potential problems as to not make things worse. He can still move his right index finger a little... go figure...
Next blog - Part II: Respiratory, Speech and Bulbar Changes
Stretch out today, run a mile, do jumping jacks, walk, the body is an amazing instrument.
