How has your CIDP affected your Activities of Daily Living (ADL’s)?

    • Anonymous
      May 30, 2011 at 2:01 pm

      My list of ADL’s (Activities of Daily Living)

      You, your doctor or physical therapist may ask how are doing? You know the standard list- can you brush your teeth, brush your hair, tie your shoes, dress yourself, feed yourself, cook for yourself or turn a key in a lock? Here’s more from when I was at my worst.

      I can brush my teeth. But, I cannot unscrew the cap on a standard tube of toothpaste.
      I cannot unscrew the cap on a standard water bottle.
      I cannot pop open a pop top can.
      I can brush my hair. Yet, if I had a pony tail I could not twist a rubber band around it to tie it up.
      I can turn a key in a lock, sometimes. I cannot open the clothes dryer door.
      I can tie my shoes. But, if I tie them in a double knot I cannot untie them.
      I can open the house door. I cannot pull the car door open.
      I wear ‘knee high’ stockings with my AFO’s, yet I cannot pull the socks up unassisted.
      I can use a specialized fork. I cannot use a fork and a knife at the same time.
      I can swing a carpenter’s hammer. I cannot hold a nail to hit it with the hammer.
      I can hold a shovel, barely. I cannot pick up a shovel full of dirt. The shovel will twist over and the dirt falls of.
      I cannot pull weeds.
      I can pick up any kind of electric or portable drill. I cannot pull the trigger at the same time.
      I cannot press the button, manually, on any kind of spray can.
      I can hold a spray bottle, the kind with a trigger. Yet, I cannot squeeze the trigger to spray out anything.
      I can stand at the sink to wash dishes. I cannot hold a soapy dinner glass with one hand and clean it with the other without dropping the glass.
      I can pick up the TV or computer coaxial cable. I cannot screw the connector on or off.
      I can pick up the garden hose. I can not attach it nor can I turn the spigot on and off.
      I can take a shower. I cannot stand on one leg and raise the other leg up high enough to wash the bottom of the raised foot regardless of if I have a hand hold or not.
      I cannot squeeze closed a finger nail or toe nail clipper.
      I can open and close a zipper lock bag, if it has a zipper. On the other hand, I cannot squeeze closed a single or especially, a double, zip lock bag between any two fingers. I can squeeze it closed against the counter. Then, I cannot pull it open.
      I cannot open a clothes pin, a safety pin or one of those potato chip bag closers.
      I can push the vacuum cleaner forward. I cannot pull it backwards.

      This is a list of activities of daily living that are most memorable to me.

      I am not complaining. I have adapted to those things I need to.

      Some of these only occurred during my weakest time period prior to, and for the first year or so, of IVIG. In some of the cases I have made improvement, sometimes ‘dramatic’ improvement. But, I only improved when the ‘proper’ dose (for me) of IVIG was maintained.

      Poor me, I get to wash dishes again, now.

      Hopefully, if you keep a close eye on yourself, you can monitor your own progress, be it forward or backward. Then you can make your own list of the kinds of things you can point out to your doctor or physical therapist

    • Anonymous
      May 31, 2011 at 11:02 am

      Thank you for taking the time to post this message.

      It is most frustrating to try to do the simplest of things only to find out you need help.

      My can do list is smaller than my can’t do list but I refuse to give up.

      I have found other ways of doing things, for example I use a spoon to open pop cans! 😀

      Have a great day,

    • Anonymous
      May 31, 2011 at 11:06 pm

      You are welcome.

      Your pop-top story reminds of one little thing I forgot to list. But, it bugs….

      And that thing is, opening a candy bar wrapper, an airplane style peanut bag or pretzel bag, or potato chip bag. Sigh.

      How can I sneak a candy bar past my wife when I have to ask her for help to open the indestructible thing?

      I finally gave up putting those (you know- dirty, contaminated, whatever) wrappers in between my teeth to tear them apart. Most of the time I couldn’t open it anyway. I always longed to take a pocket knife, or sharp poker with me. On an airline? It’s not gonna happen.

      Arrrgh, don’t need to eat those things anyway, right?

      This reply is all about continuing to have fun, to make light of my situation.
      I’m still not complaining……. I’m smiling and laughing, more often everyday.

    • Anonymous
      May 31, 2011 at 11:10 pm

      When Emily was first dx’d I was talking with a physical therapist. She told me a good sign for me to know when Emily was doing well was when she could open a water bottle by herself.

      I remember the 1st day she did that like it was yesterday. It stands out as one of those important milestone days moms remember forever.

      I hope you get to that point one day Yuehan.


    • Anonymous
      June 1, 2011 at 5:55 pm

      I went from being semi-veg to super woman (well, almost) thanks to IVIG. I now have energy to do stuff and the ability to be fairly successful. I work full-time, cook, drive, and even mow the yard on a lawn tractor. However, I know my limitations. My feet are permanently numb but I manage to walk and drive a car without incident. Before IVIG I was stumbling and falling quite a bit. Now my balance is back so I celebrate that change. I still walk slowly and carefully and hang onto the grocery cart while I get groceries–like a walker. I cannot run or jump. I will probably never be able to run a marathon. Like many I struggle with some fine motor skills, so using some kitchen utensils is a problem sometimes. It is more difficulty to text on a cell phone. Otherwise, I lead a fairly normal life, just require more time to do the simple things. And I have to have a rest day if I do anything strenuous the day before. I guess that I am lucky to be as active as I am—thanks to IVIG!!!

    • Anonymous
      June 3, 2011 at 9:05 pm

      I approach most things in life with humor, so had to do this for the ADLs giving me problems. I decided to look at whatever was frustrating me (like opening a chip bag/candy bar/bottle of anything/etc/etc) as if I were viewing it as a situation comedy on TV. Now I keep a humor journal because some of it really is funny! Example, while standing in the corner of my kitchen counter trying to open a bag of lunch meat, I got frustrated and, rather than use the kitchen scissors on the counter near me – ok, might have a stubborn streak – I gave the bag one last big tug. I pulled so hard, my arms flew back, the bag came open, and the meat went flying out in one big clump, did a few flips over my head and then landed on my lunch plate!!!! Cracked me up!!!

      I can still work, but not much more because of my physical limitations, but love God’s sense of humor (hmmmmm – might be where I got mine!!) as the things I truly cannot do anymore are my chores! :p What a hoot! And while I truly miss gardening (I’m a closet farmer), I don’t miss the other ones!!!! And another blessing through this is that during this time of high unemployment, I’m keeping a handy man, housekeeper and lawn service group employed (of course, now I’m broke … ).

    • Anonymous
      June 4, 2011 at 7:55 am

      Kelly- It is such good news to hear about your daughter. Yep, while all those ADL examples were at my worst, they were all too real and so frustrating. I suppose if opening a water bottle were baseball, I’d be batting .500.

      LyonsDen- When my wife and I go shopping she automatically pushes the grocery cart over to me. We know it makes a good ‘walker’ for me, although I can, and do, go without it sometimes. Ask yourself- Is IVIG forever?

      Linda M- that’s a hoot. Your lunch meat story gave me a vivid picture and, it reminded me of potato chips all over the room. Well, at least in the days when I still ate potato chips. I couldn’t really open the bag but I kept trying- as in the little engine that could. I would pull and pull with all my might and, once in a while, the bag might open. One time it did open, explosively, and just as with your lunch meat, potato chips went flying everywhere.

      Adapting to all these things, well that’s a different thread.

    • Anonymous
      June 7, 2011 at 10:52 am

      Scissors belong on my original ADL go, no-go list. By birth I am right handed. Again, at my worst, I could not make any right hand cut with scissors. I bought a pair of left-handed scissors.

      Alas, where are they when I want them?

      Fast forward from ‘at my worst,’ to more recent times. I am able to neatly and (almost) precisely use scissors, right-handed to cut stuff.

      Time, it has taken a long time. Over one year of mostly weekly IVIG and Imuran, 175 mg/day, to realize these gains. As the declines were slow, inexorable and hard to noice, so have the improvements ‘snuck’ up on me.

      Make your own list. Monitor your abilities and ‘disabilities’ closely.