The next several months or so will require a lot of patience from everyone (including your mom).
I started with the load dose (5 tx) of the IVIG, then went in one day every 4 weeks. I would feel sluggish for a day or so after the IVIG, then would get great energy, but lose it before the next treatment. So my doctor upped my IVIG to 2 days every 4 weeks – but again, had the let down before next tx cycle. So we went to one day every 2 weeks and that helped for a very long time to keep my energy at a steady state! It sometimes takes awhile to find the schedule that works best – once I was on a good schedule, I was able to work full-time, go dancing, do my gardening, etc … different people get different results, so be prepared to try different things until hitting on what works for your mom.
Also – a really big issue with CIDP (actually all autoimmune diseases) is chronic fatigue. It is so hard to explain sometimes, but I would feel like gravity had increased on me 20 times and every movement took great effort. I would spend those days curled in bed … a woman with Lupus wrote something called the “Spoon Theory” when she tried to get her friend to understand the fatigue. You can read it at: [url]http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/[/url] I hope this will help you both to understand the fatigue factor (I had trouble with it at first as I’ve always been very high energy!!).
This forum is a great place for learning – I hope you and your mother always get the answers you need!
“Patience” was the word I had posted on the wall in 5 inch bold type front of my bed in rehab. At 8 months into GBS I was being fed by others, could not hold anything, write, open the cell phone cover, etc. Gear everything downward, manage your expectations, and adjust to the pace of slow recovery. It took 14 months for me to return home and function by myself. Easy does it……. he will get tired easily…….when he does…….stop everything. Everyone here knows the phrase for GBS is “Getting Better Slowly.”
[QUOTE=dave824]I was hoping to see more improvement than where we are today. [/QUOTE]
Ah, good, you’ll understand why around here GBS also stands for “Getting Better Slowly.” If your wife had a quick recovery it wouldn’t be GBS 😛
Patience, Dave. The remarkable thing about GBS is that recovery does happen. I don’t know of any other patients with nerve damange who can say that. It doesn’t happen on your timetable, or her’s, or any doctor’s. But it does happen.
I don’t have much to add as you’ve received great responses. I will say that patience will have to be your constant companion.
I was diagnosed with a severe case of GBS in 1991 (the only unaffected area was the left side of my face).
It took approximately a year for me to regain a lot of what I “lost”. I had intense physical, occupational and speech therapy and “lived” at a rehabilitation institute for 3 months. I also had PT for another 6 months and progressed from a wheelchair to a cane which I only use when I’m outdoors as I’m a bit off balanced and have foot drop (my right side is much weaker than my left).
I’ve never been a runner, although I was quite active. I can no longer do “everything” I did prior to GBS, but I can do much more than I anticipated.
I understand your frustration dealing with your current abilities (or lack of). I had to deal with family and friends making very unsympathetic comments that lacked tact as well as understanding when I couldn’t attend certain functions and tired easily. Their comments of “you don’t look like anything is wrong” led me to advise them to switch places with me for a day and then they’d have a better understanding. They eventually understood the degree of my abilities and I finally realized they weren’t intentionally trying to be mean; they thought their comments would encourage me to get better soon!! 🙂
Thankfully, your case doesn’t sound too severe, however GBS is an individual thing. Please don’t push yourself too hard as that can be detrimental to your recovery.