Wednesday, August 21, 2024

Mike had his weekly checkup with Dr.Hahn this morning. We had been noticing small improvements with him the past few days but were a little hesitant to actually believe it quite yet. But Dr Hahn did confirm it saying that he noticed more strength in Mike’s right arm and leg as well as with his speaking so we’re excited about that!  He again noted that the nerve coatings can take 3 to 6 months to heal so it could take some time yet but at this point any progress is good!  We are just  waiting for the lumbar puncture appointment now. Those numbers should come back in about a week so hopefully they are considerably down again as well.  Mike had been feeling quite down the last few weeks but has been feeling a lot better the last couple days and even looks brighter.   So in general things are looking up! 

As always we appreciate all the love and support   ❤️

Tuesday, August 27, 2024

Mike had his weekly check in with Dr Hahn in Calgary today. His numbers from the lumbar puncture they did last week are remarkably lower again, which is really good! The goal is to get his viral load to 0. Currently it is at 103,000 copies/ml compared to 5.23 million copies/ml when he first started the clinical trial in Cincinnati. We have also seen some physical improvements in the past two weeks. He can now lift his right leg again as well as move his ankle and toes. He can also move his right arm again and do small finger movements. And his speaking is a little bit clearer, he seems to have more movement in his mouth when pronouncing words. He also started physio last week and as the nerves in his brain heal we plan to do more physio and neuro rehabilitation as needed. Seeing these positive changes definitely helps keep our spirits up! The doctors can’t give us an estimate of the extent of healing that may happen but, with time, we are hopeful for a significant recovery for him. We’re not sure how many more treatments he will have in Cincinnati since his viral load has dramatically dropped with these first two but we do plan to go back for treatment number 3 within the next 2 weeks.

Friday, September 6, 2024

Mike had a few appointments in Calgary today and overall we feel pretty positive about them.

He started at Synaptic Neuro Rehabilitation Center with a 60 minute speech/swallowing assessment & session. She did her initial assessment and then talked us through the physical aspects of why his speech and swallowing has been so challenging. There are parts in his mouth that aren’t working properly- nerves and/or nerve coatings that were damaged from the PML infection (caused by the virus). But they do work a little bit so she gave him some exercises he can do to strengthen those areas. The idea is that as the virus is diminished, the nerve coatings can start to heal and that combined with implementing these therapy techniques we hope things can drastically improve. She made some encouraging observations as well. Other than coordination – nerves going to his muscles not responding to his brain like they should, he doesn’t have any neuro deficits in comprehension or response. And his vocal cords/voice box seem to be intact. So hopefully he can go back to speaking pretty normally. Once those muscles start to respond and strengthen that should dramatically help both his swallowing and his speech.

He then had a 90min physio assessment & session also at Synaptic. We found that session to be encouraging as well. They ran through the physical tests on his arms and legs and made some recommendations. They offer some innovative technologies to help stimulate the nerve fibres in his right arm/hand, so we are looking forward to trying those out in the coming weeks.

After those appointments we went for a check in with Dr Hahn. Mike had an MRI Wednesday evening to see if there is any physical evidence of improvement in his brain. The official results haven’t been posted yet but Dr Hahn did tell us that he looked at the scans and he thought they showed improvement. He also noted more mobility improvements with his right arm/hand and leg/foot.

We go back to Cincinnati this weekend for another appointment on Monday.

There were discouraging times this week. We’d love to see more improvements quicker and sometimes they’re so slight we second guess ourselves but they are definitely there and we just have to remember that and focus on the day-to-day.

Thanks for all your love and support! 😊