Now that I’ve had a few days to digest all that we heard and learned at Tim’s last ALS appointment, I will try to sum it up for all you who are praying for us. As a recap, these appointments are approximately every three months. Each time we go, Tim is seen by 8 different specialists: speech pathology, dietitian, respiratory therapy, physiatry, occupational therapy, physical therapy, neurology, ALS Association, and social worker. These 8 specialists make up the team that will continue to provide care and instruction to us in the coming months and years.
Thursday’s appointment brings both good and bad news. I’ll just recap the appointment in the order it occurred. We start with good news: Tim’s weight is up by a couple pounds. We think that is probably because he is no longer walking much. He is conserving a lot of energy simply by switching to the power wheelchair. First to visit us was speech pathology and dietitian. Maxine and Lisa documented that Tim is coughing a bit more than usual. He seems to always have phlegm caught in his throat. His voice is also slightly softer than it has been. They offered several tidbits of advice to keep in mind as this progresses. Don, the respiratory guy, checked Tim’s lung capacity. That, along with his breathing, are actually stronger at this visit than at his April visit.
Dr. Roehr, the physiatrist, always has a lot of information for us and this time was no different. We talked extensively about the spasticity issues we have been dealing with. We will be adjusting the dosage of a muscle relaxant Tim is taking. If the increased dosage does not help, we may look at botox injections in very specific muscle groups to help with the criss-cross rigidity of his legs. We also talked about the need for his ankle braces, since he is really not walking much anymore. He will still need to wear them 4-6 hours a day to keep up his ankle strength for transfers and any other standing he may do.
Liz, our OT, and Sandy, the PT, were our next visitors. Liz had many different gadgets to describe to us – things that can help with handwriting, typing, eating and that sort of thing. She gave us a catalog to look at. It’s truly amazing how many inventions are out there to help people that are in this type of situation. Sandy gave us Tim’s new ALSFRS score. This is the measurement of how things are progressing. On a scale of 0 to 40, Tim’s score has dropped from 39 to 38 to this time it’s 34. He dropped 4 points in just 2 months. Sandy is ordering a lift for us so that if Tim falls at home again, we will have an easier way of getting him back up. She watched Tim walk a bit and confirmed Dr. Roehr’s opinion that Tim should still be wearing his AFO’s at least some each day.
Pam Droberg is a nurse practitioner that rotates in as the neurology specialist in turn with Dr. Tiryaki and Dr. Bundlie. We have now met all three neurology specialists. We spoke with Pam for quite some time about how things are going in general as well as certain specific issues. We participated in a cognitive abilities assessment. Pam talked to us about how that went. We are seeing that there are certain cognitive areas in which Tim is experiencing some mild changes. And in this area, as well as all others, the likelihood of this rate of change is expected to continue. Not all ALS patients experience this, but Tim happens to fall into the percentage that do. This is making it difficult for Tim to make complex, reasoning types of decisions – things that affect financial decisions, family/parenting decisions, and sometimes at-risk decisions.
The last set of specialists was Lisa from ALS Association and Nina, the social worker. They spoke to us again about voice banking and other aids for communication. I also got information regarding respite care, particularly for this fall when the boys and I will be going to church on Wed nights.
Lots of information – trust me – I know. Our appointment lasted from 9:15 am to 3:45 pm!! I would love to interact with anyone who reads this about more if you are interested. Just shoot an email my way.