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Tuesday, July 22, 2014

Note on Appointment

I mentioned last time that I had canceled my appointment with my neurologist on 7/1 due to not being ready financially, and would need to see about extending my prescription (which ran out yesterday).

Just so no one is worrying, I did reschedule for 9/8 and they renewed my Sinemet prescription for another 3 months. Picked it up yesterday, and it is waiting for me to partake.

So I'm good for the time being. I just need to get the paperwork submitted so I'm ready by Sept.

That's it. Didn't want to leave folks hanging on what happened with that. More later.

Thursday, July 17, 2014

Catching Up

I haven't posted in a while, so figured I better get to it now that I'm officially 54 after yesterday's birthday bash.

First . . .

Update on my supplements

Around April 11th, I had gone off the dopamine-agonist medication, leaving me only on Siniment, the standard treatment. But I had added a list of supplements I started taking, along with some diet changes, hoping it would take up the slack, eventually.

Well, three months later, none of them have seemed to help. Noticeably, anyway. I did add a new supplement that seems to be having some effect, though it is so light right now, it is hard to say for sure. More on that in a minute.

I've decided, after some more research, the following:

  • Tyrosine - A amino acid your body doesn't make which is necessary for the creation of dopamine. However, one generally gets an adequate supply of this from eating meat. I may keep some on hand to use during fasting periods when we don't eat meat. Otherwise, I'm better off getting this from natural food sources than supplements.
  • Vitamin B6 - Another ingredient needed in the creation of dopamine. However, it is abundant in most all vegetables and fruit. A diet rich in those, like what I'm on, doesn't need any additional B6 beyond what my multivitamin supplies. I've got a full bottle still, so I'll take them till it runs out, but I'm likely flushing most of it down the toilet by taking them. Your body only uses so much a day. The rest passes through.
  • Magnesium Chloride - Supposed to help the neurological system function better. This is the second time I've tried them. I've not noticed any difference either time. Which probably means my body isn't short on this mineral.  Really not needed.
  • Vitamin C - Taken to help combat free-radicals in the body and brain, of which PD brains seem to have a problem with. The idea is it helps reduce damage to brain cells caused by free-radicals. Though there is a good chance of lot of this is going down the toilet as well, especially combined with my multivitamin, combating free-radicals is a good thing. Successfully doing so wouldn't show up in symptoms reduction. So I'll probably keep taking this one. Plus, it has the added benefit that it combats sickness, which may be why I didn't get the last round of stomach sickness that went around in our family.
  • Grape seed extract - like Vitamin C, this fights free-radicals. So I'll be keeping this one too.

One I added since that list is cucurium. It is an extract from the spice cumin, of the elements of cumin that reduce inflammation. One theory is that PD is caused by inflammation in the brain, destroying brain cells. I took it for two full months with no notable effect. So when the second bottle ran out, I didn't reorder.

One that shows promise is Agmatine Sulfate. It is derived from L-Arginine, an amino-acid often used in body building. L-Arginine has shown promise in helping PD, but can't get past the brain barrier. Agmatine can. And studies have shown it has helped PD-like symptoms in rats, both in motor function, but more importantly, mental functioning. It apparently has a protective effect on brain cells and protein production, a problem in PD brains.

I've been taking it for about a month and a half. While I haven't seen body-wide improvements, it has seemed to help with mental functions. At least is seems I don't feel as mentally out of it as much as I used to. I should be able to tell more definitively whether it is helping or not in a couple of months or so, but currently it appears promising.

I should also mention the sweetener Manitol that I talked about previously. Some studies had shown it improved PD symptoms in fruit flies. Well, I guess I'm not a fruit fly. After three months using it, no change in symptoms. Probably due to the fact I couldn't take enough. You remember the laxative effect I said it had? I was putting 4 teaspoons in my oatmeal every morning. The effect seemed to get worse each day, but it was producing some intestinal distress. I finally dropped it to 2 teaspoons, which was more bearable, but meant I couldn't take enough to help, if it could.

Manitol is the primary sweetener used in gummy bears. Which is why on Amazon, there are some pretty funny reviews by people who ate half a big bag of them. Yes, gummy bears are a laxative.

So once some of these run out, what I'll be left with is:

  • Sinimet
  • Multivitamin
  • Fish oil
  • Coconut oil
  • Ginkgo Biola
  • Vitamin C
  • Grape seed extract
  • Agmatine Sulfate

Still a lot of pills to take each day. Ug.

Symptoms Update

I've not noticed much changes in the last three months, but changes can be so slow you don't notice them. What I have noticed is the following.

My left leg is not moving as efficiently. When I'm standing at a sink, I'll notice my toes on both feet trying to curl under. My left leg feels more draggy than ever. I feel like my gait has changed because of it, though so far I've had no problems getting around. But more than likely I'll experience freezing at some point--suddenly being unable to move your legs, so its like you are frozen and you have to get unstuck to get moving again.

Slowness of movement, known as Bradykinesia. Sometimes I feel like I'm in slow motion, especially if I'm trying to do something with my left hand. I've noticed that happening a lot more in the past three months.

Otherwise, I'm still experiencing the same symptoms I did before. My best time so far is when I was taking the dopamine-agonist and Sinimet. I almost think putting up with the drowsy feeling of the agonist might be worth it.

But it may be a while before I find out. I was supposed to have gone to see the neurologist July 1st, but had to cancel because I didn't have my charity filing done yet, so I wouldn't have been able to pay for it. Now I have to reschedule, and should be able to submit the paperwork soon, but means it might be another three months before I can get in.

Hopefully the doctor will extend my Sinimet until then, but if not, I can always use L-Dopa to get the same effect, just not as efficiently. But I'm ordering some as a backup.


One last piece of the puzzle is exercise. It is recommended. But it is the one area I've slacked off in, sort of.

I say sort of because even though I'm not working out, I do help my wife clean houses nearly everyday. That means I'm getting in a lot of walking and light physical labor. So that's got to be good, as opposed to my previous job of sitting at a desk all day.

We used to swim at the gym, which was good exercise, but we had to give it up when funds dropped too low and we could no longer afford it. We're hoping to be able to resume that in the future.

I also bought a Tai Chi DVD, as it is recommended as good exercise for PD in the way of balance. But we've never really done it. Finding time seems to be a problem. Usually by the time we finish working, get home, eat, it is pretty late. Like tonight we arrived home from cleaning an office around 9:20 pm.

So maybe cleaning houses will have to do for my exercise for now.

That should pretty much catch you up on where I'm currently at. Though I could go into some things I've discovered, but I'll leave that for another post when I get back here.