Tips for family & caregivers

11-15-08 I know from my own experience that it is EXTREMELY frustrating maybe even impossible for our loved ones & caretakers to grasp just how fortunate they are that they can just stand up and walk to their destination, no problem. I know I am fortunate that I can walk to some degree, even stand for a bit and do some dishes I never thought I'd be excited about that! I wheel myself into the kitchen park the chair and clean a bit. When I get hungry I have to make my own food, which depending on how much sleep I was able to get becomes gluten free cereal with rice milk. Everything is a challenge when using a wheelchair is your fastest form of getting around. I know there are probably time constraints for this challenge to even happen. I am going to try to get my son to participate in this challenge for a few hours. Here's the challenge: Have your family member or caretaker use only the wheelchair to get around, when they are hungry they should wheel themselves into the kitchen never stand up. Make a sandwich or whatever in a seated position. When they need to go to the bathroom, they must wheel themselves to the bathroom. Of course they can never truly understand how difficult this is for we disabled folk, but it might give them an idea of the true difficulties we face on a daily basis. That is my challenge, I hope some of you will be able to give it a try. Thanks for your participation. Have a great weekend!~ Lisa

09-12-08 This subject area has recently occurred to me after speaking with so many MS patients & those that care for them. I thought I should add this area to address some of these issues. I of course will not use real names, sometimes I can't remember anyway. :) I'm certain for some, this first issue will ring a bell or strike a nerve. The quote below is from WebMD;

According to the National Multiple Sclerosis Society, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue.

Some of the concerns/complaints I have heard from some of my fellow MS patients concerning the lack of understanding about their symptoms. Fatigue is #1. We are not being lazy even though it may seem that way to others who do not have this disease. I've been at the point I get so fatigued, there could just be a little piece of paper on the floor a few feet or even inches away but I just don't have it in me to simply go pick it up. Just walking or even just standing is often exhausting. I can remember back in high school I would walk 3 miles a day! There was a point where 3 inches was too much. I know I have been very fortunate to have been able to use the Immunosyn vaccine. If you are needle phobic, and I know several people who are, here is a link that may help you. It will be great when we can all use it, but I also believe in eating anti-inflammatory foods. In my words Immunosyn is somewhat like steroids, but no side effects except for the injection site (insulin needle). I didn't blow up like a balloon as prednisone always does to me. Oops I'm going into another tangent yet another MS problem...lack of concentration!

One issue I have heard is that we simply cannot think as quickly as a healthy person, so please have patience when we cannot come up with an answer or move as quickly as you might like. We are not doing this on purpose just to tick you off. Trust me, we hate that more than you ever could, it is very frustrating and sometimes humiliating. Try to remember we are often dealing with scars in our brains that leave us with the inability to think or move quickly.

Another issue patients have relayed to me is one I too can relate to. Much like healthy people we have our good and bad days. We may be able to perform a certain task one day and the next day or maybe even just later in the day our body will simply not cooperate. Some MS patients have legs that turn in and toes that curl up or down, it absolutely affects our balance. This is especially annoying and embarrassing when it happens while going to the bathroom and you fall off the darn toilet. We are not doing this on purpose, please be patient and supportive. We would really appreciate that!

My own bathroom experience was a few years back. The bathroom was very small. My MS was getting worse affecting both sides of my body now, and I fell. My son was home but he never had to help me like this before. For the first time I could not get up at all, it scared the hell out of me and just made me mad and frustrated. I yelled and screamed a lot, freaking out my son and dog even more. That was an awful day, but my son had his wits about him and called my mom. So my mom & step dad used a kooky kind of maneuver (I still don't know how we were able to do that in such a in bathroom). I'll try to explain how that went. I was on the floor next to the toilet so my mom got in front of me as best she could (I'm still on the floor) and my step dad stood behind me. Then they helped me get to my feet and "sandwiched" me so I could not fall again. Then we ever so slowly backed out of the bathroom, it was kooky, but it worked! Thankfully I have never had to repeat that bit of fun.

If you have an anonymous issue you would like to see on this page feel free to email it to me, I will use no names. Thanks so much! ~Lisa

CCSVI in Multiple Sclerosis: NEW-Website with MRI/MV instructions for your doctor