Well, "the weather outside was frightful..." but we ventured out in it this morning to get to Philly for my ALS clinic appointment. The snow was coming down so hard this morning in Lawrenceville, that Adam cleared the driveway twice within 45 minutes before I even got out of bed at 7:45. Though the snow was heavy and abundant here in the Trenton area, there were very few cars on the road, and by the time we got to Philly, the snow had turned to mush/rain and there was barely anything on the streets. All was good.
I saw Dr. Elman, and Jen, the Nutritionist. The other therapists (OT, PT, and Speech) I was supposed to see did not come due to the high volume of cancellations the office got today. At first I was a little put off by this, but it turned out to be fine. I am going to have home visits from these therapists (or ones in the home care office) and that will be more helpful anyway.
Mostly good stuff resulted from this visit. My breathing test indicated a slight decrease in breathing strength but nothing to be worried about. It is definitely not as strong in a laying down position, but that is to be expected. I am maintaining my weight which will help me maintain my strength. I received a couple of eating utensils that I can bend toward me in order to help with eating (Adam managed to get us an extra one).
Dr. Elman answered all my questions, which ranged from medical marijuana (I decided I don't need it though I might later) to my over the top crying spells (I will start a medication for that and no, it won't make me a zombie). We talked a lot about how my body is changing, and why it is doing the things it is doing. I am going to have special sleeping boots made that are really soft and supportive so my heels don't hurt as much while I sleep. I am adding a few new meds as well as a vitamin supplement to my repertoire, including something new for this REALLY annoying cough. And if that doesn't work there is a plan B.
We talked about some difficult things like tracheotomies, and why or why not PALS would chose to have one or not to have one. She reassured me that I am no where near having to make that decision, but since I am a big believer in having all the information, it is good information to have.
There were three very reassuring moments for me. The first was when she was quickly reviewing my blood work from November. I might get this explanation totally wrong so bear with me. She said my "blah blah" looked good. I said what is the "blah blah". She said it is a blood test that measures the muscle protein (I think) in my blood. If the numbers remain within a certain range is an indication that the disease is progressing slowly. Granted, I am having this blood test again in a few days and I will see if it changes, and this test was all the way from November, but this was reassuring to me.
The second reassuring moment was when Adam asked if things can plateau. For example, can I lose leg strength to a certain point and then it stay that way for a while. The answer is yes. I was thinking that my legs have plateaued, so I might be able to stand to transfer for longer than I originally thought.
The third reassuring moment came during our conversation with Jen, the Nutritionist. I am starting to choke on thin liquids like water. I was really afraid that I would have to start adding thickeners to my water, tea, etc. Honestly, the thought of that really grossed me out. She said I can still drink water, tea, etc., but when my muscles feel tired (after talked, laughing, crying, first thing in the morning) I can drink things like milk, V8, fresh juice drinks, smoothies. They will keep me equally as hydrated. That was reassuring to me from a quality of life standpoint. And yes, I can use straws. Just sip slowly.
I am blessed to have access to this fabulous clinic. I am blessed to have found Dr. Elman. I am blessed to have parents and a husband and three beautiful kids and a wonderful extended family and friends who make me laugh and are along for this ride. I am blessed to have to blog about my appointment in order to fill in everyone I want to keep in the loop.
Live to Love. Love to Live.