Blessing and A Curse

As time continues to move forward, so does the need for increased mechanical devices to help with Patrick's care. There is no magic pill for ALS, but there are many gadgets, mechanical devices and technologies that help with care and symptom management as the disease progresses. The mechanical additions generally make things easier, but come with an emotional cost. They are a kind of benchmark in the ALS journey. A reminder that you have now progressed to a certain point, it's a difficult psychological game. Additionally, for a caregiver, these devices come with new responsibilities, instructions and "a learning curve."

To be honest, the past few holiday seasons have been difficult with my father's death last year and Patrick's diagnosis a few days before Christmas the year prior. This year I hoped to have an "ALS free" Christmas, and I attempted to accomplish this by putting off the delivery of a Hoyer lift until after Christmas. Unfortunately, it just wasn't meant to be and Christmas Eve I received a call from the SuperHealth Company that a brand new Trilogy Ventilator was set to be delivered to us and whether we could fit them in that day. No, I told them, we'll take it next week and it was scheduled for New Year's Eve instead. It was at this point that I realized the ridiculousness of an ALS free holiday, frankly ALS is a part of our daily lives and no amount of wishing will change that fact.

On New Year's Eve, the respiratory therapist brought our latest piece of equipment, the Trilogy Ventilator.  The therapist was quite helpful and provided over two hours of instruction and set up for the ventilator. I'd be lying if I said I was thrilled with the new responsibilities around the ventilator. After the therapist left I had the feeling of "deer in headlights." With each new device comes new responsibilities; including operational, cleaning and coordination of supplies. This tagged on to a realization that we are now starting a new stage of ALS disease progression and I'm overwhelmed. This is my side of the equation, I can only imagine Patrick's side when these additions come through the door.



Trilogy Ventilator

Patrick needs the ventilator to help with his breathing overnight. The first night, Patrick opted for not using his new ventilator and we put it off for the evening. This is our typical MO, we stare at the equipment for a few days before actually starting to use it. It's the psychological piece, if you leave something in your house for a period of time in the same location, it starts to become part of the furniture or perhaps you develop a certain level of acceptance, either way the stress level goes down and it becomes part of your daily routine.

ALS requires many mechanical devices for daily living. We have a power chair, electronic lift, hoyer lift, ventilator and shower chair to name a few. I will say I am grateful to live in this time and not the time of Lou Gehrig. Although, my preference would be to "cure this awful disease," there have been tremendous advances in mechanical medical supplies since Lou's time. I often wonder how caregivers and patients managed. Wikipedia has an interesting section on wheelchairs with photos of antique chairs; these must have been so "wonderful" (sarcasm)! Here is the link: http://en.wikipedia.org/wiki/Wheelchair: 

The other challenge with mechanical devices is that not all are covered by Medicare or health insurance. This is one of the reasons you see such a huge price tag attached to the care of an ALS patient. If you remember from past blogs, we renovated our bathroom, purchased a power chair accessible van and added a lift to our home. None of these things were covered by insurance and we continue to use our savings and retirement funds for these items. I must say that I am grateful that we are able to afford these things because many people can not. I believe that there should be a consideration with Medicare and health insurance plans to cover these types of expenses. Frankly, as a terminal disease, for a health insurance company, ALS is pretty inexpensive in regards to claims. The cost of Patrick's claims are four clinic appointments a year, medications for symptom management and a ventilator machine.

Loaned Shower Chair

We were fortunate in December, to borrow a shower chair from the ALS Association loan closet. The loan closet has been a tremendous blessing for us and we've used it for a variety of items including a shower chair, walker and scooter. But with the loan closet, you are at the mercy of what is available at the time. With the shower chair though, we really lucked out because the cost of the shower chair we borrowed is about $3,000. One of the greatest challenges with caring for an ALS patient is showering and this chair has made it easier and safer.

We live in the electronic age with gadgets, mechanical devices and technology. Sometimes I'm not sure if it's a blessing or a curse, but it does make life easier for providing care. For an ALS patient living in this time period versus an earlier period, such as Lou Gehrig's (late 1930's), has it's advantages. I know in our ALS journey there are still mechanical additions to make and we will adjust as we have in the past; with a little grace and a little kicking and screaming!

Hope all is well in your world. My sister has taken to texting me a quote a day, which I really enjoy, so I leave you with this thought:

"Our greatest foes - and whom we must chiefly combat - are within" - Miguel de Cervantes