CIDP and Me - The Good, The Bad, And The Ugly

The Good

I am using my rollator more than my chair to get out and about, which is great. I still use the chair for longer treks like shopping, but most of the time I use the rollator. It's slow going (according to Scott I move at 'lazy old man' speed, which I figure is A-OK) and exhausting but very liberating. I even get to sit in real chairs at restaurants! My goal is to have enough stamina to drive to appointments and walk to and from the parking lot by September when Scott will be teaching and not so free to drive me all the time. I can get the rollator in and out of the car on my own, which is step one of this plan. The biggest challenge (other than stamina) is walking down hill. It's amazing how terrifying the slightest slope can be. I also recently discovered that my breaks don't work very well when the wheels get wet, so rollating in the rain is another challenge for me. I like challenges...

A benefit of walking and standing more is that my strength seems to be improving a little more quickly. My latest feat (achieved but 30 minutes ago) is lifting my heels off the ground while bridging. This may not seem like much but like all the little things, it's a big deal for me. Way back when (two+ years ago) it took not being able to stand on my toes for me to realise that something was seriously wrong. I can't do it while standing yet, but at least it is now a possibility! The strength gains are not just in my feet. My core and legs are getting better and better at supporting and holding me up - so yay!

In other news, I had a long-overdue visit with a very good friend. We even managed to spend an evening with a few 'old' friends who I had not seen in an age (or decade). It's always nice to reconnect and catch up. I really don't know how we are all so old now though!

I finally got my new custom AFOs on Friday! They look pretty cool (in a nerdy, mobility aidy kind of way). The background is a cross-section of a peripheral nerve and the foreground is the CIDP turtle. Here is a pic:

They are made of much heavier plastic than my over-the-counter AFOs and feel totally different. My centre of gravity has changed enough that I have trouble standing unsupported in the new ones. Apparently I have developed some bad habits by compensating for weak quads with locked knees and these new AFOs are designed to prevent that. My physiotherapist and I will have a lot of work to do when she gets back from vacation! In the meantime, these are a good inspiration for me to keep on top of my home exercises. I'm currently wearing them around the house and changing to the old ones when I go out. There will be a period of adjustment with some 'tweaking' trips to the Orthotist as we sort everything out in terms of comfort and function. Well, comfort maybe a strong term - but the aim is to make them as comfortable as wearing a plastic boot all the time can be.  

I recently decided to 'break up' with a particular medication and this definitely belongs in the 'good' category. Sometimes the side effects of medications outweigh the benefits. In this case the brain fog was just killing me. I could not think clearly or deeply and had a heck of a time concentrating on much more than reruns of Supernatural. Enough was enough. The fog has lifted and the world is sharper and clearer. I can complete thoughts and read books with a little more substance. I've been devouring literature and loving it. I have also managed to finish up some long overdue 'adulting'. 

Let's see, what else is good? Well, driving. Driving is good. And fun. Although, as with everything, there is a little hiccup. I'll relay the story while keeping it in the 'good' section because, ultimately, driving is good. So, we got the controls installed and I have been driving a little bit. I haven't gone out solo yet but more out of laziness than anything else. The annoyance is with Access Nova Scotia (the DMV). Shocking, I know. So the final step for legal driving is to get a note added to my license. I was told by the occupational therapist that once the controls were installed all I needed to do was go to Access Nova Scotia with my license and my prescription. He cautioned that they may make me do a driver's test but that it should pretty much be a rubber stamp. Great. We finally got around to this last week. Of course, the person we spoke to had no idea about hand controls or what to do. She went off with my license and prescription and talked to a few people. When she came back she told me that they faxed the information to Halifax and that I could expect a letter in the mail (!) within 1-3 weeks that would let me know what I need to do. Um... seriously!? She was not friendly nor did she have any interest in listening to my understanding of the situation. Sigh. Not much I could do though. I did not want to risk having my license revoked or anything else, so we left without making a scene. We'll see what this letter says I guess. 

The Bad

Carpal Tunnel. I have developed carpal tunnel in both hands/wrists. It's annoying and one of the main reasons I have not written in so long. Typing on the computer can be quite nasty and if I'm not careful can quickly lead to a week of uselessness for my hands. I have a new custom wrist brace, which helps and have to wear it pretty much all the time. If I overdo it I also find that I need to sleep with towels wrapped around my elbows (to prevent nerve-pinching through sleeping with bent arms). I am quite the dream at night these days - splints on feet and wrists and towels wrapped around my elbows... Maybe if I'm lucky I can acquire a neck brace or mouth guard to throw in the mix. The braces and towels help though and things seem to be improving. 

Fatigue. My old friend has decided to rear it's exhausting head again. I guess it is partially due to all the walking I am doing. It's frustrating. I've had to cancel plans and spent too many gorgeous days laid up on the recliner. Nothing I can do about it though. Pushing just tires me out more, and too much caffeine turns me into a jittery mess, so I listen to my body and do what I can when I can. I guess my body has adjusted to the high steroid doses as I no longer have the crazy Prednisone energy that used to get me through the day.

The Ugly

IVIG. Things were looking up here. I thought we had figured out how to prevent reactions, but alas 'tis not so. I had reactions to my last two treatments, which is very disheartening. I'm still going back for more though! We're changing brands (this will be the third one we've tried) and I need to get a bunch of blood work done to check whatever it is they want to check. I really hope this gets sorted out once and for all. The reactions have not been as intense, but they still suck and wipe me out for a week or so (possibly another contributing factor to the fatigue).I'm also trying to space out the treatments again - I went from every 2 weeks to every 3 without new weakness a few months ago. Now I'm trying every 4 weeks... Fingers crossed. If this works it will go a long way to giving me a little more time for life again.  I want to say that my nurses are awesome and have been excellent to take care of me and stay on top of this. They are great advocates and will even  follow up with my neurologist if I have trouble getting through. I spend a lot of time in this blog praising my physiotherapist and occupational therapist, but my nurses are just as important and praise-worthy! 

There you have it. All in all things are progressing in the right direction and I'm happy about that. I have a lot to look forward to in August - visits from family and friends, day trips around the island, learning to stand (again), more walking and rollating (I made this word up, but I like it). Hope you are all having a great summer!

Ciao for now!