Thursday, 20 June 2013
Thursday June 20, 2013 - A morning in the life
So, it's 9:00am on a Thursday morning and already in the MS life, action. I thought I had enough in me to go out to my car with my walker on a Timmys Run for a morning coffee. I made it fine down to my car, but the walker is so big (a beast) and heavy getting it into my cleaned out hatch is always difficult, but I need my morning coffee. My internal battery was running at 80%, but the loading of the walker took it down to 40%. Made my Timmys Run for my small with 2 creams. Unloaded the heavy walker in my parking lot, internal battery of me and my MS now down to 10%... enough to get into my building and into the apartment... barely. My apartment door is an industrial strength door and is set to close itself. It is set on kill. Ten minutes with the walker to get through the door, now battery is 0%. I tried to get to my chair on the balcony and rest up and recharge my MS battery a bit. It took me another 5 minutes to go through the sliding door, it is too narrow to take a walker through. I have no table outside on the balcony which would have saved me. I tried to place my coffee on the second chair, but this meant I had to bend way over to reach it. Already at 0%, my knees buckled and I sank slowly into the sleeping position... thank God I went down slowly as it is concrete out there. I already know, once I am down, there is no getting up. I managed to do the important things like have my phone in my pocket, and save the valued coffee. I always wear my Lifeline panic button around my neck so I pressed it for help. Lifeline called 911, but it took them 40 minutes to arrive... good thing I was not injured, just minor scrapes from going down even gently on concrete. The paramedics were very nice, lifted me up and into a chair, even warmed up my coffee for me in the microwave. Resting up for even an hour lying down on concrete recharges the MS battery inside of me a bit. Now, lets tackle the day... do not sign up for the multiple sclerosis, ever. My daughter says that she has a table and 2 chairs in a patio set, and wants to donate to her dad, but I can't go over and get it because I can't carry anything, and my daughter can't fit them into her car. I wonder what to do. Anyway, nice day out. I promise.
Thursday, 13 June 2013
Thursday, June 13, 2013 -- MS Clinic Today
I just got home at 4:30pm from my 11:00am appointment with the MS Clinic at University Hospital, London. A couple of weeks ago they scared me badly when they told me I may not even qualify for government funding for the latest medication. I was told that you have to be in decent condition to qualify as the medications do not work if the MS has progressed too far. The medication costs around $35,000 per year and the government is very particular about who gets sponsored, they don't want I guess to waste funds or effort on really sick folks. Kind of reminds me of being married... for better or worse only we don't want the worst to be too bad.
Well, today, much better news. They are applying to get me funded on TECFIDERA. This med is so new that it is approved, but not yet for funding... but it seems the MS Clinic folks can make it happen. It is weird to be so encouraged by this, a med that will mess with your immune system, but make it longer between MS relapses, which they figure I was having the past couple of months. They were scared that my relapsing/remitting MS was graduating to a steady progressive type.
Today I could walk with a walker a long way. I could barely make it 5 feet a couple of weeks ago. For one examination I had to remove my running shoes (velcro) and was unable to get the left shoe off last time. Today I whipped both shoes off and put them back on again. Two weeks ago I could read only the first 5 lines of text in the vision test. Today I could read everything.
I have now a motorized wheelchair and I am sitting in it right now at my desk. My victories nowadays are little things like today and the wheelchair. I have MS. I will never walk unaided again or play baseball or golf. I lost a marriage due to MS. But it all comes into good light when I hold Aria, my new granddaughter.
I promise.
I just got home at 4:30pm from my 11:00am appointment with the MS Clinic at University Hospital, London. A couple of weeks ago they scared me badly when they told me I may not even qualify for government funding for the latest medication. I was told that you have to be in decent condition to qualify as the medications do not work if the MS has progressed too far. The medication costs around $35,000 per year and the government is very particular about who gets sponsored, they don't want I guess to waste funds or effort on really sick folks. Kind of reminds me of being married... for better or worse only we don't want the worst to be too bad.
Well, today, much better news. They are applying to get me funded on TECFIDERA. This med is so new that it is approved, but not yet for funding... but it seems the MS Clinic folks can make it happen. It is weird to be so encouraged by this, a med that will mess with your immune system, but make it longer between MS relapses, which they figure I was having the past couple of months. They were scared that my relapsing/remitting MS was graduating to a steady progressive type.
Today I could walk with a walker a long way. I could barely make it 5 feet a couple of weeks ago. For one examination I had to remove my running shoes (velcro) and was unable to get the left shoe off last time. Today I whipped both shoes off and put them back on again. Two weeks ago I could read only the first 5 lines of text in the vision test. Today I could read everything.
I have now a motorized wheelchair and I am sitting in it right now at my desk. My victories nowadays are little things like today and the wheelchair. I have MS. I will never walk unaided again or play baseball or golf. I lost a marriage due to MS. But it all comes into good light when I hold Aria, my new granddaughter.
I promise.
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