As you should know by now, I have a lovely little type of Peripheral Neuropathy called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). My first symptoms appeared in March of 2015 and it has been quite the ride. I'm not usually one for ribbons or randomly assigned 'cause' months, but this one is personal. I'm not asking anything of you (if you know me at all you should know that fundraising is about as appealing to me as dental surgery) but spreading some information is never a bad thing. If you do want to donate, I'd recommend the GBS/CIDP Foundation (https://www.gbs-cidp.org/). You could also donate blood/plasma if you are so inclined as it is needed for the magic goop that courses through my veins - IVIG. There, that's over...
I wrote a post about CIDP back when I started the blog and have added the link to my main page. If you don't feel like reading you can always watch some of the many videos on YouTube. The following is a short little introduction to the disease. It does a nice job of pointing out that my case is outside of the norm, but I've always known I'm special;)
If you have been reading my posts you know that the focus of this blog is my slow path to recovery. I find that there is very little out there that goes into much detail about the recovery process. Saying that %90 of people with CIDP recover is incredibly vague and unhelpful. What does 'recover' mean? How long does it take? Do those who end up in wheelchairs have a lesser chance at a greater recovery?
Well, it means something different to each person, which is part of the problem. It is also a chronic condition that may come with relapses and regressions. It never fully goes away, so 'recovery' may not be the best word to use as it implies a finality once achieved. It may be better to think of this journey as one of rebuilding or rebounding but that's not quite right either. Semantics aside, the goal is to improve as much as possible and achieve a 'new normal' plateau that can hopefully be maintained with or without ongoing treatments.
I have stopped asking 'how long until I reach this plateau?' because I know it is impossible to answer the question. A lot is unknown about the disease and the experts aren't much help here. I try to follow stories of others with CIDP on Facebook groups and through other blogs, but there is so much variation, they hardly provide a road map for me. Though, it sure is comforting to read about and interact with other people in similar situations! At this point I'm happy that things are improving and will do all I can to make sure it continues as long as possible. I will do my best to keep on top of my treatments and exercises when I do plateau so that if and when a flare up happens it wont get the best of me.
Over the course of two years I have gone from being a fairly active able-bodied person to being all but paralysed from the hips down to being able to walk short distances with a walker (with a cane or nothing under close supervision of my physiotherapist). I'm rebuilding atrophied core and leg muscles and teaching my body to balance with numb feet and paralysed toes. I have weakness in my hands and wrists to boot. But I am getting better. I celebrate every new muscle movement and continue to push myself as much and as safely as I can. The doctors are happy and continue to be elusive with time-lines or giving any indication of how much more I will regain.
I've created a little graph to illustrate how my mobility has been affected. It is a somewhat arbitrary assessment, but I think it's kind of fun. The top line is for my hands and the bottom for my legs. I assigned a number (1-100) based on two month intervals. I keep a daily journal and used this to come up with the numbers in the graph.
I focus a lot more on my legs than my hands, but they have certainly been affected. I am pretty functional in my hands these days but I can't knit, crochet or write for more than a few minutes and my wrists are quite pathetic. My hands have really been up and down and seem to respond better to steroids than IVIG. Each dip on the chart has been followed with a course of steroids. I didn't catch the one last spring/summer fast enough and the damage was swift and severe. I now look at my hands as my barometer and am hyper-sensitive to any tingling or weakness that creeps in.
The real drop in the mobility of my legs happened before the treatments kicked in. I started IVIG in late August 2015 and it took a few treatments to take effect (we also had to play with the schedule to find a frequency that worked). In terms of the range for my legs, I figure that walking with AFOs alone is 85, walking with a cane and AFOs is 75, walking exclusively with a walker is 70, being able to stand without assistance is 50, etc.
I find it interesting that I am currently at around the same level of mobility as I was when I started IVIG in late August 2015. This is a good sign. It is also scary as I was not using a wheelchair back then - I was stubbornly (and dangerously) plodding along with 1 or 2 canes. It's amazing I didn't break anything sooner. Of course, it is not exactly the same. I'm sure that my muscle atrophy has me weaker in some places right now. It's encouraging to see the curve going in the right direction -- I really have come a long way since the dark days in hospital and rehab. My current (realistic) goal is to get to 85 and be walking with AFOs alone. That will sure be nice.
There you have it, a little bit of a public service message about CIDP and how it has affected me. There is a lot more to it (the ups and downs of medication, nerve pain, residual health concerns, psychological effects, etc) that you can read about in my previous posts. This is really meant as an overview and I hope it was informative and not too long or boring. I'll get back to my regular style of updates next time (big things are on the horizon).
Ciao ciao ciao.
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