Yesterday, we had our fourth visit to HCMC’s ALS Clinic. As before, we spent a long day in a patient exam room spending time with each of 8 specialists throughout the day. Maybe we are just becoming better at it, but it didn’t seem as bad this time as it has in the past. We actually got out of there at about 2:00 this time. Here’s a general recap of the day.
Tim has lost weight – in fact he’s lost about 12 pounds. He’s down to about 169#. We tried to come up with why he’s losing so much, and strategies on how to prevent more weight loss. This issue will only continue to plague us in days to come. Right now, swallowing is OK. He occasionally chokes, mostly on water or his own saliva, but in the coming months the choking will become a more significant player in our daily living.
Speech therapy did their first round of testing on Tim’s facial muscles, including his tongue. Normal scores are 0; Tim already shows some -1’s. The spasticity that has made mobility impossible on his legs is now moving into his tongue. His articulation is slower now than normal. He is also showing fasciculations (muscle quivering) in his tongue.
Sandy, Tim’s PT, has been super impressed with the great job the Share the Care Team is doing with Tim. And I wholeheartedly echo that! Tim’s legs are much easier to manipulate now that he is receiving range of motion stretches every day. Even still, mornings are becoming much more difficult to get Tim out of bed. I think we will be switching to the Hoyer lift soon. I don’t want to get hurt getting Tim out of bed. Sandy also runs a series of tests to show how much the muscles are still capable of. His left leg cannot overcome gravity any more. He can still lift his right leg a few inches.
I stepped out during the respiratory tech’s visit with Tim. I met with Dr. Tiryaki, the neurologist privately. It was a difficult conversation, but well worth it. We spoke about several key issues that I will relay back at a later time. I am still digesting the information she gave me and am not quite ready to make it public yet.
Together, Dr. Tiryaki and I went back and continued Tim’s appointment. She talked with him about getting back on the Prozac and about seeing a counselor. The Prozac is used for more than just depression. Another symptom that sometimes occurs with ALS patients is called lability. That means emotions that just come out, the patient can’t stop themselves from crying or laughing for example. Tim has been struggling with uncontrollable laughter. It hasn’t been a huge problem at this point, but it has created a couple of interesting situations here at home. Tim has agreed to go back on the Prozac. Dr. Tiryaki also strongly suggested Tim see a counselor. A psychologist has joined the ALS Clinic team and she is specializing in working with ALS patients. Tim has agreed to meet with her at least once.
We also met with Liz (OT), Dr. Roehr (physiatrist), and Lisa (ALSA). Nothing significant in any of those areas, other than his hands are showing marked decline as well. His thumbs in particular do not respond they way Tim would like.
His ALS Functional Rating Score was 29 out of 48 this time. That’s down from 34 last time.
As always, we covet your prayers and are so appreciative for all the help so many people have given to us. Blessings to you all.