We meet again to assess the progression of the ALS with his care team at USF Tampa.

Notes from last ALS Clinic visit 12/15/23 (originally scheduled for 1/5/24, but moved up due to length of time between appointments):

• Social Work - assisted us with contacts for agencies that can assist with navigating the world of private insurance and medicare. Provided us with information on how to set up advanced medical directives, wills, and living wills.

• Speech Pathologist - assessed speech and swallowing. Advised again that the swallow study be pursued. Discussed voice and message banking to preserve the parts of Brent’s speech that remain.

• Pulmonary Specialist - assessed strength of breath in prone and relaxed positions. Safe zone is any number above 80. Brent measured at 93 in prone position and 76 in relaxed position. Advised to not use CPAP as ALS patient and to consider adjustable bed frame to allow gravity to assist with breath at night or when sleeping in bed.

  • UPDATE JAN 25th: During a telehealth appointment, an assessment of his breathing was conducted. This test consisted of Brent audibly breathing out for as long as he could while the doctor kept time. A formula was assessed to determine the strength of his breathing. The test was completed twice and both scores put him at 80. This is not as accurate as an in person test with the machines, we will update in March once we have more current readings.

• Physical Therapy - provided some exercises that Brent should continue to do while in his chair or bed. Advised to listen to his body when doing exercises and not over exert to allow him energy to remain independent throughout the day.

• Occupational Therapy - discussed equipment that we have and what might be needed to assist with his independence and provide security. Trying to get us an electric hoyer lift as a loaner (have manual but they worry about my strength and possible injury). Starting to explore power wheel chairs.

• Neurology - discussed the uniqueness of Brent’s case due to the interaction of advanced diabetic neuropathy. Ordered three months of IVIG treatment to see if the infusions would provide further strengthening. (Brent’s first round in August provided approximately 3 to 5 days of improved strength). Brent is currently prescribed all three approved medications for ALS. One is intolerable orally and may be administered through feeding tube in future. Other two are being taken as prescribed pending assessment of liver function. Will discontinue if medications are causing harm.

  • UPDATE: after one additional round of IVIG, the treatment was discontinued. The overall experience and the lack of any reportable improvement made the trauma of the treatments not worth continuing for two additional months.

Appointment with our favorite provider (his primary care). She is the most amazing human and one of the rare doctors that still shows genuine compassion, understanding and love for her patients. We LOVE her! (If you’re reading this…I’m keeping my ass kissing game strong in case we need another favor HAHA).

Standing appointment with diabetic specialist.

Appointment at the local ALS Clinic to evaluate Brent’s swallow functions and determine the need for a feeding tube now or in the future.

NOTES:
The test was actually completed on 2/12/24 - this has been the most frustrating test to get scheduled and we are still not sure that the right procedure was done. We will follow-up with USF in March, but hopefully they have what is needed to make a determination about a feeding tube or recommendations. The radiologist said that she had no immediate concerns.

The HMC (Hot Mess Club for those not in the know) are getting together after a LONG hiatus to enjoy some time together to eat, drink, and laugh until someone needs a bathroom. Pictures of silliness are forthcoming.

Meeting with attorneys to finalize advanced directives and memorialize his wishes for medical care.

My former in-laws are in town and are stopping by to spend a meal with us. They vacation in Florida most years during the winter and we are lucky enough that they are still a part of our family - even after Grace has moved away. They love Brent and try to celebrate with us on or near his birthday each year.