I'm sorry I missed a few weeks - I'm afraid life has simply not been that exciting, or at least blogworthy. Course, that is not really a bad thing - no news is good news as they say. I was scrolling through my daily symptoms/recovery journal the other day and noticed that this week marks one year since I first heard the words Chronic Inflammatory Demyelinating Polyneuropathy. This was delivered as a probable diagnosis at the end of my first appointment and EMG with my neurologist on August 17, 2015. The diagnosis was confirmed a few days later following a lovely spinal tap (I do not care to repeat that experience anytime soon) and my new life of IVIG and endless medical and physiotherapy appointments was launched.
At that time I was using a cane, wearing AFOs and deteriorating quickly. I had a lot of neuropathic pain in my feet and legs and was having trouble sleeping. I had no idea what was going on and was getting pretty worried. I was still working but had followed doctor's orders to cut back and was down to 4 hours a day. I was thrilled to have a diagnosis and treatment plan but really had no concept of what I was in for. The neurologist tried to warn us that it would be a long road and could take a year to fully understand the extent of the neuropathy, but I thought he was just being overly cautious. I went home and Dr. Googled away, which made me both scared and hopeful. I saw lovely statistics like 80% of people recover (whatever that means) and the possibility of long term remission and figured, being young and otherwise healthy, that I would easily fall into the best case scenario. Clearly, I have not and the past year has been different than I would have ever imagined. However, I'm still here fighting away and making some great gains. I am certainly a little less naive than I was a year ago. I am also far better acquainted with the healthcare system and the hospital than I ever imagined. I could go on and on but you've read my blog - you know what the deal is. I'll move on now to a quick update of the past few weeks (blogworthy or no).
I had my 3-month check up with my neurologist today and it went really well. He said that the improvements in my leg strength and mobility are 'very promising.' That is as optimistic as I have ever heard him, so I am very pleased. He wants to continue everything as is for now and will reassess in 3 months. Meanwhile I am to continue focusing on standing and building up my quads - I'm on it doc. He did not electrocute or probe me in any way, which was another positive of the appointment. The only pain was that he was an hour and a half late, so I lost my window for lunch before physio. But, whatcha gonna do?
Physio continues to be beneficial and fruitful. I have had some minor breakthroughs and we all feel I am on the cusp of greatness (standing up unassisted). Now, the cusp could still be months away, let's not get ahead of ourselves. That said, I'm able to lift my butt off the bed a little bit in an unassisted bridge exercise and I can push my foot against resistance in a plantar flexion. More exciting, I can now kick up my left leg to full extension while seated (righty is a little behind but getting there). This happened for the first time on Monday and sent Scott over the moon. These may not sound like a lot but are the culmination of months of nerve regeneration and gentle exercising. It is very encouraging when things start to work.
We have been spending most of my physio sessions working in the parallel bars, with a focus on putting weight through my knees and proper gait for walking. Here too we've been seeing steady progress and strength gains. I no longer walk like my legs are matchsticks. My stamina is improving every session at a bit of a crazy rate. We set a benchmark of 3 lengths of the bars 3 weeks ago and today we lost count after 15 or so. I am a long way off from walking naturally or without bars or a walker, but we'll get there. I hope the steady progress continues but am taking it one day at a time. Sadly my physiotherapist is going on vacation for the next two weeks (the nerve!) and there is no one to cover, so I will be off my feet for awhile. I will still have lots to do at home though.
So there it is, a little reflection and a quick update. Ciao for now!
