equipment for daily living

I used an over the door pulley such as this to work on range of motion once home. This is only about $25 and there is no weight involved...just your own resistance. It has helped me to keep range of motion in my shoulders, for the most part.
The plastic, non slip things I talked about below! This are great in the kitchen. (as is a teen who can pick up things for you that are too heavy!!)
This is the reacher that I most liked. I used several different kinds. This one held up the best of them all.

This is the dressing stick that I've used. Used not only for dressing, but also for getting things in and out of the washer and dryer.



RehabMart has much of the equipment needed: http://www.rehabmart.com/all-categories.asp

Daily Living made easier

Daughter is sick this morning, so we're missing church. I'm having time to sit and think...that is sometimes not a good thin! ha. Anyway, I was thinking about the things that have made it easier over the last few years to get things done...so, maybe this will be useful to someone?

Of course, my electric wheelchair! That wasn't even an option. I know that it wouldn't be affordable for many people, including me. While I was in the rehab hospital, they arranged for me to get this...it was necessary for me to be able to return to work; therefore, it was paid for through a Vocational Rehab grant of some sort. So, check through the Voc Rehab in your area! My wheelchair was equiped with everything that was needed: tilt, a seat that raises, lateral support, arm support things (like these technical terms?), etc.

When I returned home from the hospital a friend gave me an electrical toothbrush and an electrical can opener...lots of energy savers there!

Dressing sticks to pull up pants, etc...can also be used to help get clothes in and out of washer and dryers.

These plastic non-slip discs that I use in the kitchen (well anywhere really) to put things on and it keeps them from sliding around.

Reachers. Very important. I have three or four of them.

Raised toilet seat! (insurance paid for this)

Shower chair, hand held shower (insurance paid for the shower chair)

Walkers...I have a couple of different kinds...I use them depending on what I'm going to do. There is a tray that will fit on the tray that will fit on the walker that comes in very useful that will be very useful in getting things around the house.

A lift chair. A friend gave this to me, so I have no idea how much it cost...but very invaluable as I would have not been able to sit on any furniture...well, I would have been able to sit on it, just not get out of it!

I'm sure there are other things that I'm not thinking of right now...so, I'll add to later! Maybe even add pictures to explain some of my technical terms.

cars, driving, brakes, and Polymyositis!

Well, leaving a friend's house the other night I notices my brakes making this grinding noise. The next morning, still making the noise. So, off to the place where they fix your brakes, take your money, and you hope that they are being honest with you about what is really wrong. So, he says it's just the back brakes. That's a good sign...that's where I heard the grinding noise. Bad thing...he says it's down to the rotors? (hm, did I spell that right?) Anyway, a couple of hours and several hundred dollars later, I'm driving away with new back brakes and a warning to keep an eye on those front brake pads b/c there's about 40% wear on them. I stop at the first traffic light and notice how easy it was to hit the brake! Wow...all that hard pushing lately wasn't actually weakness in my legs...it was just bad brakes! How was I to know? My muscles have been so weak since being diagnosed that driving was difficult at its best in the last several years. I was thinking back...Four or so months after getting out of the rehab hospital I had to go back and be tested/evaluated in order to be released to drive again. They passed me, but I'm not sure what they were using to determine this on...I had no business being behind the wheel of a vehicle! I couldn't even move my legs ...I had to use my hands to lift my leg and move it between the gas pedal and the brake. It has only been recently that I'm not doing that (and sometimes I still have to). It is only by God's grace that I wasn't in or caused an accident. Now, you couldn't have told me that at the time, and if you had tried I think i would have either argued with you or curled up and died...probably the later at the time.

Anyhow, I have good brakes now and my legs/muscles are strong enough that 95% of the time I can move between the gas pedal and the brake without any problem.

IVIg update

6 months! Wow. I'm not sure that I really believed that I'd make it to 6 months of normal lab work.

I think I'm still slowly regaining strength. Dr. Lowery thinks that since the strength gain is coming with the decrease of prednisone it is more evidence that I had steroid myopathy.

I still need to work on building up muscle and strength of core muscles as my posture is still off, which causes pain...and my gait is off, also causes pain...but it is all getting better.

Pain Med Free

I've not taken pain meds since around Feb 25. Not totally pain free, but it is tolerable. My right hip, where I had the steroid injection, has actually been mostly pain free. The hip itself is fine, the muscles in my thighs have been throbbing if I walk too much or something, but I'm hoping that will improve over time. I am having periods of time of no pain...quite nice :) Wish it was more often, but I'll take what I get!

Decreased my prednisone again. Probably why I'm feeling so fatigued right now. I'm going to try and just work through it instead of going back up for another week. I'm hoping the fatigue passes.

Strength seems to be still slowly increasing. Doctor says to work on range of motion in my arms as I seem to have lost some of that. Still can't lift legs on my own...I mean, I can walk, but to lift them onto the couch, or to lift it high enough to step into the van...well, I have to use my hands to lift it up. I guess you use different muscles to move different ways. I was mopping the floor the other day and flashed back to trying to do that just a year ago...pushing the mop was impossible for me! I still don't like to mop, but I'm glad that I have the ability to do so right now!