New Challenges

     Well the next couple of weeks are hard, so it is going to be hard to read as well. I try to see the positive it most situations but sometimes this MSA gets the best of me, this is one of those times.

    

     I knew this day was coming; everyone with a terminal illness must face this especially if you have MSA. Even though I know this day is coming it does not make it any easier.

     We made the appointment with our lawyer, John B. Piazza. Before going to see him there was heavy thinking and decisions to make. It is not the first Will we had drawn up, we did have one with each house we bought. This time it was different I was singing Power of Attorney over to my husband. It is oddest feeling, even though I trust him whole heartily. I was still giving someone all the power over me, to not only to make decisions for me if I cannot make them for myself but also to remember those wishes you wanted when the time came. It is written authorization for this person to act on your behalf in business and private affairs.

      The other matter was Living Will. I do not want a bunch of tubes keeping me alive like a puppet. If you start with the tubes when do you shut them off?

I also don’t want my love ones having to make this decision it will be hard enough. I guess this is the something positive, knowing that this is all taken care of because it was on my mind.

     I have read a lot about MSA and all your autonomic muscles at some point fail, this includes breathing on your own and swallowing. A lot of people that have MSA get a tracheotomy and a feeding tube. I have not decided what I will do if I have to cross this bridge but I want to make the decision that best suites me at that time.

     

     The next order of business was having my Case Manager come for a re-evaluation from Community Care Access Centre (CCAC). This is a great program in Ontario. They try to help you stay in you’re your residence as long as possible. I was having more falls and it was unsafe in the shower alone. Not only is it hard to get dressed but when I am pushing my leg into the socks or pants cause cramping now. Another, symptom of MSA, the muscle spasms. So I met with the Case Manager and it is necessary for someone to come each day from Monday to Friday to help me shower. put cream on, comb my hair and get dressed. This is great that they have this service but no more are the days where you stay in bed or in your PJ’s all day, if you want. Another freedom gone!

     So my helper started coming that Monday at 8:30 til 10:00 and as my needs grow she is there to help me. I would be lost without her.

     They (CCAC) are also coming to measure me for a wheel chair. It is not very safe for us to be going out to malls ect. where there is a lot of foot trafffic, all that meandering gets complicated. CCAC brought a black Helio for me to try. I went on their site and noticed that you can have a blue one, so that is what I ordered. It is only 17 lbs and semi-pneumatic tires and the seat is made of memory foam. It folds like an accordian, so I am not limited who I go with. I am going to spending a lot of time in here so might as well have the color I want.

Even though none of these decisions are easy I will get through it with the love and support of family and good

friends!