Clinic day today, it's year 4 of making the trip to Hopkins for ALS clinic. A lot has changed in those 4 years, but clinic has remained consistent every 6 months for us. We almost decided not to go today, I mean what's the point we thought; we have hospice now and they can do everything here at home. Why make the trip? Well, we decided; we can still make the trip so maybe that is reason enough to go. So we went. It was an easy afternoon drive to Maryland, not much traffic, fall colors and sunshine on what started out as a rainy day. We didn't talk much on the way, the Tobii computer was behind my seat tucked away in it's carry on bag bungeed to the seat so it wouldn't slide in the van. It's difficult to have a conversation without the eye gaze these days. I will admit I am kind of grumpy on clinic days, mostly because I don't want to face the progression of ALS and see in writing my husbands decline. I already know of course, I take care of him everyday, but there is something about the official documentation of it all that annoys me. We arrived at Johns Hopkins outpatient building and pulled into valet parking. We know by now the easiest way to navigate parking and check in, we have been coming here long enough for the valet driver and I to recognize each other. I unhooked all the belts and straps to release the wheelchair, adjusted Bert, helped him drive out of the van, grabbed the Tobii arm for the chair, the Tobii bag, my purse and the yellow valet ticket. I nervously jogged to keep up with Bert as he headed through the revolving door, I rolled my eyes behind his back because this maneuver is dangerous and the automatic handicap entrance is right beside that revolving door. Some things will never change. We rolled through security, orange bands on our wrists marking us for neurology and headed up to the 5th floor waiting room. We checked in there, grabbed our ticket and waited our turn. Everything was smooth sailing, I felt sorry for the first timers, I remember the pit I had in my stomach our first couple times. Back when I really did not like seeing people in wheelchairs reclined back due to their weak necks and computers in front of them, I could not imagine Bert ever progressing to that state. But here we are, we are those people 4 years since diagnosis, 5 years into this disease. I can literally remember like it was yesterday us walking into clinic and wanting to time things just right so we could eat soup in the cafeteria. Now trips to the cafeteria are to much trouble. No social media check ins no selfies today, just not in the mood.
Weight and vitals first. A tech does this, and they don't really know about ALS. May I have your arm the girl asked Bert and looked puzzled for a moment when he didn't lift it for her. I always think to myself if I were running the outpatient neurology unit I might do a little training so that the techs know a bit about the diseases on their respective clinic days. Blood pressure excellent. Hhmmm, I think. Figures his blood pressure is excellent now, I would rather he have high blood pressure than ALS…whatever. I hand over the laundry list of medications. I have to point out and explain each one to ensure accuracy, although it's probably not super important, I am obsessive like that and want the medications accurate. Now for his weight. The tech wants to know how much the power chair weighs. I don't know I say, I break it to her that they weigh him with the mechanical lift. She seems slightly annoyed but not too much. She leaves the room and I feel bad that she has to go find the lift and get help, when she comes back to usher us to another room I offer to weigh myself and then stand Bert. I explain that he can stand for a few seconds if I hold him. She happily agrees. I quickly regret having agreed to weigh myself, but on second thought think what does my vanity really matter at this point. So, I weigh myself and then fix the chair directly in front of the scale. I position Bert and count to three squat down and then hoist him up to stand, bent knees, his top half draped over top of my shoulders to weigh us both. In what feels like forever I hear the scale beep. After sitting him back in the wheelchair and positioning him into a comfortable spot the tech tells us his weight is the same as last clinic. A little twinge of pride comes over me, no weight loss means I am doing OK feeding him. The tech is a friendlier now, joking with us. I think to myself, I am glad I could make her day a little better by not making her use the lift to get Bert's weight; I think this with a touch of sarcasm. Back to the waiting room we go, back out to a lot of nervous first timers.
Our turn again, and they are mostly on time. We follow a new girl back to the corral (that’s my description of the ALS clinic area), she directs us down the hall and we pretend that we need the direction even though we know the way. She goes over all the forms clinic starts with, the ALSFRS, the PBA emotional lability scale, and the clinic trial agreement form; we try and pretend we are new to these too but she see's through our smiles an hands us the clip board explaining she is new to this position. We exchange introductions and then I quickly fill out the forms. I know all the answers without even reading the questions I have filled these out for Bert so many times. I set up the Tobii so Bert can speak for himself, I always feel like that is important. I want people to hear his speech even if it is in Saul the computer voice. You can still hear his inflection and easily get a taste of his unwavering sense of humor. He asks first to see Jeff, the guy who represents the wheelchair company, Saul the computer voice states he should bring his tools. Bert wants the wheelchair adjusted and he has already researched and knows what settings he wants changed. Profile 1 increase the speed range for me to be able to drive and Profile 2 speed range and sensitivity changed for himself. I have no idea what he is talking about, but Jeff is on the floor with his tools working on the chair. I am horrified that Bert neglected to inform me that all this mechanical work was going to take place because the wheelchair is filthy from soccer games and dirty parking lots…I would have cleaned it before we came had I known someone was going to have to touch all that dirt. The chair is adjusted and the arms tightened, Bert takes it for a trial spin and can drive much easier with the new sensitivity settings. Bert smiles as the computer happily states that "Jennifer will not have to drive as much now!" Everyone is always criticizing my driving, and quite frankly it's just not right. And I don't really wanna drive anyway!
Next is the breathing test, the Forced Vital Capacity or FVC. We have decided there is no point in dwelling on this test. It is what it is. Bert has chosen not to get a tracheotomy or go on mechanical ventilation. We are being taken care of by hospice and living each day probably on borrowed time, but only God knows how much time we have so onward we go. This is super hard for me because I of course want Bert here forever with me to grow old and see our children grow and do whatever amazing things they will do. But ultimately it is not my choice to make so I pray and will continue to pray for acceptance and patience, and guidance to cherish what is important and live my life grateful and always seek out the positive in every situation. We see the nurse practitioner and go over a few annoying symptoms and make a plan to reach the goal of as much comfort as possible. The physical therapist has suggested a TENS unit for pain relief and Bert is already on the internet researching the option as they talk. I love this about my husband and I love that technology is available to allow him to participate and have control over his own care. The staff gives us a very pretty quilt with a soccer ball design that a generous woman has made for the ALS patients coming to clinic. The woman has been touched by ALS and chooses to give back. It is a lovely gift and perfect for soccer season and the fall weather. We finish up with talk about the importance of the cough assist and BIPAP, then get our next appointment. God willing we make it till April and are able to make this trip again. It will be spring then, and I will pray for the opportunity to navigate through clinic once again with my husband and maybe even make time for soup in the cafeteria.
xx Jennifer
Weight and vitals first. A tech does this, and they don't really know about ALS. May I have your arm the girl asked Bert and looked puzzled for a moment when he didn't lift it for her. I always think to myself if I were running the outpatient neurology unit I might do a little training so that the techs know a bit about the diseases on their respective clinic days. Blood pressure excellent. Hhmmm, I think. Figures his blood pressure is excellent now, I would rather he have high blood pressure than ALS…whatever. I hand over the laundry list of medications. I have to point out and explain each one to ensure accuracy, although it's probably not super important, I am obsessive like that and want the medications accurate. Now for his weight. The tech wants to know how much the power chair weighs. I don't know I say, I break it to her that they weigh him with the mechanical lift. She seems slightly annoyed but not too much. She leaves the room and I feel bad that she has to go find the lift and get help, when she comes back to usher us to another room I offer to weigh myself and then stand Bert. I explain that he can stand for a few seconds if I hold him. She happily agrees. I quickly regret having agreed to weigh myself, but on second thought think what does my vanity really matter at this point. So, I weigh myself and then fix the chair directly in front of the scale. I position Bert and count to three squat down and then hoist him up to stand, bent knees, his top half draped over top of my shoulders to weigh us both. In what feels like forever I hear the scale beep. After sitting him back in the wheelchair and positioning him into a comfortable spot the tech tells us his weight is the same as last clinic. A little twinge of pride comes over me, no weight loss means I am doing OK feeding him. The tech is a friendlier now, joking with us. I think to myself, I am glad I could make her day a little better by not making her use the lift to get Bert's weight; I think this with a touch of sarcasm. Back to the waiting room we go, back out to a lot of nervous first timers.
Our turn again, and they are mostly on time. We follow a new girl back to the corral (that’s my description of the ALS clinic area), she directs us down the hall and we pretend that we need the direction even though we know the way. She goes over all the forms clinic starts with, the ALSFRS, the PBA emotional lability scale, and the clinic trial agreement form; we try and pretend we are new to these too but she see's through our smiles an hands us the clip board explaining she is new to this position. We exchange introductions and then I quickly fill out the forms. I know all the answers without even reading the questions I have filled these out for Bert so many times. I set up the Tobii so Bert can speak for himself, I always feel like that is important. I want people to hear his speech even if it is in Saul the computer voice. You can still hear his inflection and easily get a taste of his unwavering sense of humor. He asks first to see Jeff, the guy who represents the wheelchair company, Saul the computer voice states he should bring his tools. Bert wants the wheelchair adjusted and he has already researched and knows what settings he wants changed. Profile 1 increase the speed range for me to be able to drive and Profile 2 speed range and sensitivity changed for himself. I have no idea what he is talking about, but Jeff is on the floor with his tools working on the chair. I am horrified that Bert neglected to inform me that all this mechanical work was going to take place because the wheelchair is filthy from soccer games and dirty parking lots…I would have cleaned it before we came had I known someone was going to have to touch all that dirt. The chair is adjusted and the arms tightened, Bert takes it for a trial spin and can drive much easier with the new sensitivity settings. Bert smiles as the computer happily states that "Jennifer will not have to drive as much now!" Everyone is always criticizing my driving, and quite frankly it's just not right. And I don't really wanna drive anyway!
Next is the breathing test, the Forced Vital Capacity or FVC. We have decided there is no point in dwelling on this test. It is what it is. Bert has chosen not to get a tracheotomy or go on mechanical ventilation. We are being taken care of by hospice and living each day probably on borrowed time, but only God knows how much time we have so onward we go. This is super hard for me because I of course want Bert here forever with me to grow old and see our children grow and do whatever amazing things they will do. But ultimately it is not my choice to make so I pray and will continue to pray for acceptance and patience, and guidance to cherish what is important and live my life grateful and always seek out the positive in every situation. We see the nurse practitioner and go over a few annoying symptoms and make a plan to reach the goal of as much comfort as possible. The physical therapist has suggested a TENS unit for pain relief and Bert is already on the internet researching the option as they talk. I love this about my husband and I love that technology is available to allow him to participate and have control over his own care. The staff gives us a very pretty quilt with a soccer ball design that a generous woman has made for the ALS patients coming to clinic. The woman has been touched by ALS and chooses to give back. It is a lovely gift and perfect for soccer season and the fall weather. We finish up with talk about the importance of the cough assist and BIPAP, then get our next appointment. God willing we make it till April and are able to make this trip again. It will be spring then, and I will pray for the opportunity to navigate through clinic once again with my husband and maybe even make time for soup in the cafeteria.
xx Jennifer
RSS Feed
