Wednesday, May 27, 2015

Did you know today is National MS Awareness Day?

Yeah. Me neither. No flowers or big delivery of any kind. We still get mail and Shane goes to work. Seems kind of pointless to me. Oh, and just for the record, last month was national MS awareness month. A whole month of  nothing special. While I'm on the topic, apparently the color code for MS is  ORANGE. Why not black? I look good in black. No one looks good in orange. I guess all the other colors got taken first. Its funny, to me, to color code maladies. I'm sure no one else wanted orange. Get a group of MS supporters wearing their snazzy shirts together for a barbeque and guess what it looks like?

Oh, Look! The convicts are here to clean the park! Come on kids, time to go home.

Fortunately, the news feed Shane set up for me to monitor mouse deaths (aka drug trials) alerted me to this important fact. So now I can.... do what I normally do every day.

Since we are on the topic, I had my meeting with Dr.S yesterday. I remembered most of the things I wanted to ask her about so that was a good start. I do have her email, in case I forget something, but have not gotten into habit of sending her links with a 'did you see this article?' attached. That might create a difficult line to walk between Dr/patient and victim/stalker. I would have so many questions.

First off, she has heard of Terry Wahl's and her diet. Like me, she is skeptical of one person's diet change becoming a cure. Going from wheel-chair bound to ambulatory would require  major nerve repair. As you age and/or disease progresses your body is less able to repair the damage and recoveries from relapses are less dramatic and just less in general. At least that is how the pathogenesis of MS has been observed so far. But since they do not know exactly why the damage happens in the first place, or the mechanisms by which they happen, I think there is room for lots of research and discoveries.

Just because something is not the result of a big expensive drug does not mean it didn't happen. So there is skepticism to be had all around. Most of the drugs out there are only about X% effective anyway for X% of patients (my statistic, so quote it loosely). Nothing has been found to reliably  make a huge impact on a huge number of people yet. So they just keep coming up with new expensive drugs to treat, or kill a few, patients.

We discussed my particular state and what might be helpful. She did not give me a 'free massages for life' gift card, but she did recommend seeing one of the therapists there to  help think through what lifestyle changes might be beneficial. So I might have another chance of winning a gift card.

I asked again about the exercise/gimpy legs correlation vs causation vs  whatever. She said it was just time. I was due for it.  Which would be great if I had a calendar and could plan. Wine tasting? Oh wait, my tongue is due to be numb that week. (That did happen and was one of the funkier episodes I've experienced) She said if there is a worsening that can be recovered from in an hour of quiet time, the activity is fine to do. If it takes a day or more, I might want to rethink what/how I'm doing things.

An hour of quiet time? I told her that sounded heavenly. Along with impossible.

Make breakfast: rest an hour
Garden: rest an hour.
Make lunch: rest an hour
Costco shopping: rest an hour.
Make dinner: rest an hour.

It probably didn't help that the night before my appointment Malachi was up and restless from 2am-7:30am and the whole house was woken up to smoke alarms going off when Kateri made hashbrowns for him at 5:40. Including Fiona, who then refused to nap until I got home from my appointment at 12:00. So lots of opportunities for quiet restful time in a day. Obviously.

I brought up all the new 'breakthrough research' reported in the headlines in the past couple months. Again, it was, 'Its all very interesting. We'll see how things go from here. It really comes down to trials and results. With humans. And years, and more years of trials.'

I brought up the micro biome, or whatever its called, research being done and it is still 'we're not really sure, but we're looking into it.' There is one trial specifically focusing on it, but it requires being on a particular drug, Tecfidera, which in addition to helping drugs get across the blood brain barrier, also allows non-drugs and potentially fatal particles to get to the brain. So not super exciting. Given that Fiona is still nursing Dr. S would not, nor would I ,be comfortable with any of the 2nd line drugs, which mess with the blood brain barrier and cross into breast milk. So it would be back to the older 1st line drugs. Meaning needles. Lots of needles. And scar tissue. And I'm not sure I could even get a needle in anywhere anymore due to said scar tissue. If I knew it might help, I might try and work them in, but after flunking the last two I'm not so certain they are worth it.

For now we decided to wait another 6 months, then regroup and see where Fiona is on the nursing timeline and I'll keep studying up on the  therapies she would recommend Tysabri, Gilenya, or Tecfidera. I don't know why she kept leaving out massages, like it wasn't even an option. I think I might just go to Canada and get one. I hear you don't even need a prescription up there.

So there it is. Just in time for National MS Awareness Day. Now you are painfully aware how difficult getting  a massage out of your neurologist really is. Thankfully, Shane is not a neurologist.

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