I saw a new neurologist Monday, here in Marble Falls. Bottom line, I'm happy with him. Not only is he in town, so no more 2 hour drives each way to Temple, but he has dealt with this for a long time, was knowledgeable on recent developments, did more tests, and is considering more options than my previous neurologist.
By way of example, my previous neurologist didn't have MAO-B inhibitors on her "go to" medications. She said because she didn't feel the benefits to side-effect ratio was good. She pointed to diet restrictions as evidence of a difficulty using them.
MAO inhibitors essentially inhibit the production of an enzyme. MAO-A inhibitors are used in psychotic diseases and have significant diet restrictions to avoid the chemical tyrosine, which can cause hypertensive reactions among other issues when MAO-A is present at the same time. MAO-B inhibitors, however, don't have those restrictions on diet. But when they came out, the FDA automatically gave them the same restrictions as MAO-A inhibitors. Later, as evidence was accumulated that the B version didn't have the same risks as the A one, the FDA relaxed the dietary requirements on MAO-B inhibitors. By inhibiting the MAO-B enzyme, which breaks down dopamine in the body to get rid of older dopamine molecules, it allows the dopamine in your system to hang around longer. That makes any dopamine produced by your brain cells still alive to work longer, as well as any taken in the form of Sinemet--the main drug used in PD.
One MAO-B inhibitor has been around for a while. At one point it was thought to have neuro-protective action, but was not proven to be true in the end. However, 10 years ago a new form came out with the brand name Azilect. It has shown evidence of slowing down the progression of PD. The first med to do so. All others treat symptoms only.
There is your PD lesson for the day. All that to point out that my previous neurologist didn't appear to know about MAO-B inhibitors not having the same diet restrictions as the A version. It was obvious she wasn't going to prescribe any of those. I thought we should at least give them a try and see, but she didn't seem to be open to doing that.
Not so with the new neurologist. He first went through a list of meds and asked me whether I'd taken any of them. The list was longer than I expected, and I could say no to them all because the only ones I'd had was Sinemet and a dopamine agonist. Then he ended that by giving me a history of PD meds, like what I'd read and given above, and ended that he'd like to prescribe Azilect for me. I didn't even have to bring any of it up. And through his presentation he described the diet restriction issue that I've detailed above.
The result being he has been dealing with this since the 60s, knows his stuff, and is open to finding the best med mix among a wide array of options instead of the narrow range of the previous neurologist. And he is not only willing to prescribe a MAO-B inhibitor, he brought it up as the first option to try. So I'm feeling a lot more confident that he can help me.
The down side is that Azilect is still under patent, which expires in Feb. 2017. Until then, there is no generic equivalent. Which means the medication is expensive. Looking on line, a 30 day supply retails just over $600, and with discounts will go anywhere from the upper $400s to the lower $500s. IOW, a month's supply would be more than our car payment.
Upon telling him I didn't have insurance to cover that, he pointed me to the company who has patient assistance programs. After searching, I found the qualifications and form to submit, which based on their info I should qualify for, I can get it for free. So I've filled out the form and sent it to the neurologist, he's filled in his part. I'll pick it up today and fax it into the company with my proof of income. Not sure how fast they'll process it and I'll get it if approved, but I'm hoping I'll have it by the end of next week. We'll see.
Aside from that, he confirmed the previous neurologist's diagnosis that I have PD. He said something along the lines of me fitting the standard characteristics, so for him, there is no doubt that this is PD, and not some other disease that mimics PD symptoms.
So it appears I'll get to try out this med and see how much it helps. I'll keep you updated. I'm going back to see him again in February.
Until I have more info . . . bye.
Wednesday, November 12, 2014
Tuesday, October 21, 2014
Medication Change Results
Last time I indicated that my doctor and I believed the increase dosage of Sinemet was causing some side effects. So almost 2 weeks ago, I went back to taking only one pill three times a day. Following are the results.
On my head movement, I don't feel like I'm doing it as much. My wife said she hadn't noticed it much since cutting back. So the increased Sinemet did appear to be causing that.
On my standing issues, both feeling a need to rock back and forth and my restless/weak left leg that protested at holding me up, have fallen away. I stood for 3 hours in church last Sunday. While my feet were tired (normal) and I could feel some toe curling fatigue, it was nothing like its been for the previous 4 weeks. By the end of the service I was putting normal pressure on my left leg without much protest. I realized at times during the service when before it would usually be bad, that I wasn't even thinking about it.
The only thing that hasn't gotten better is the multiple-clicks on the mouse. Maybe a little better, but still there. Like today I clicked in Firefox to open a new tab--I got 3 of them. But I'm learning new shortcut keys, like Ctrl-W closes a tab. So that symptom is due to the progression of PD in my right hand. So far, no difficulties typing with that hand, but I'm sure it is coming.
So most of those did come from the increasing of the Sinemet. They would be considered dyskinesia. Which I thought I'd need to be on Sinemet much longer and at higher doses before I experienced that. I guess not.
I'm sticking with my original dose until I see my new neurologist on Nov. 10th. There are other options, including adding Requip back into the mix, though I'm hoping he'll be open to giving a MAO inhibitor a try first. Until then, putting up with the extra pain and tremors at the lower dose.
That's the scoop for the time being.
On my head movement, I don't feel like I'm doing it as much. My wife said she hadn't noticed it much since cutting back. So the increased Sinemet did appear to be causing that.
On my standing issues, both feeling a need to rock back and forth and my restless/weak left leg that protested at holding me up, have fallen away. I stood for 3 hours in church last Sunday. While my feet were tired (normal) and I could feel some toe curling fatigue, it was nothing like its been for the previous 4 weeks. By the end of the service I was putting normal pressure on my left leg without much protest. I realized at times during the service when before it would usually be bad, that I wasn't even thinking about it.
The only thing that hasn't gotten better is the multiple-clicks on the mouse. Maybe a little better, but still there. Like today I clicked in Firefox to open a new tab--I got 3 of them. But I'm learning new shortcut keys, like Ctrl-W closes a tab. So that symptom is due to the progression of PD in my right hand. So far, no difficulties typing with that hand, but I'm sure it is coming.
So most of those did come from the increasing of the Sinemet. They would be considered dyskinesia. Which I thought I'd need to be on Sinemet much longer and at higher doses before I experienced that. I guess not.
I'm sticking with my original dose until I see my new neurologist on Nov. 10th. There are other options, including adding Requip back into the mix, though I'm hoping he'll be open to giving a MAO inhibitor a try first. Until then, putting up with the extra pain and tremors at the lower dose.
That's the scoop for the time being.
Saturday, October 11, 2014
Medication change
As I last reported back in September 10th, my neurologist increased my Sinemet dose to double what I was taking, since my symptoms had gradually increased. She also seemed a bit puzzled that my current dosage wasn't helping any more than it was. But since it was helping, she figured we could up the dose and see if that got rid of the symptoms better.
It has been just a little over a month, and here is how it has worked.
On the positive side, the increase dosage did help my dystonia (pain stiffness in my left arm and leg) and reduction in tremors. Didn't totally erase it, but did improve it considerably.
However, other symptoms started after increasing the dose. Some I thought was just the progression of PD, but their quick advancement happening right after the dose increase made me wonder if they were more due to side-effects of the medication. Those symptoms include:
1. My head started moving around more. Lenita noticed it, and I could tell. I noticed too at church, standing up, that my whole body wanted to rock back and forth. It felt like dykensia, like what Michael J. Fox has, which is a side-effect from taking Sinemet. But that usually only shows up on higher levels of the medications and after a few years. It shouldn't be happening yet to me.
2. My left leg started feeling antsy and weak. I really noticed this at church.
For those not familiar, we stand through most of our worship. Those that need to can sit, but mostly we stand. Especially me since I'm a reader and start reading and chanting the first service (equivalent to Matins) which takes about an hour and fifteen minutes, then I'm in the choir singing for another 2-2.15 hours for the main service. That's a total of standing and singing for 3 hours every Sunday morning. Been doing this since 1996 without too much problems.
The last three Sundays, my left leg has been giving me problems. I'm noticing it by the time the second service starts, and by the time the homily comes and I get my one chance to sit down, my left leg is feeling all wobbly and weak, and muscles are restless. I made it through the last service only by favoring my right leg. Seems if I take pressure off the left leg, it helps calm it down. But as that gets worse, my right leg will tire out faster too. If it doesn't get better, I may have to start chanting in a chair or something.
This past week, on Wednesday, I noticed the same thing happening as I started cleaning the first house. It gradually got better, though. I think moving helps it, instead of standing in one place like I do on Sunday mornings.
3. This one is the most annoying. You may recall I mentioned earlier this year that my right hand was slightly tremoring and feeling stiff, and if it followed my left hand's progression, I would be having difficulty typing with it by November.
Not too long after upping my dose, I started to have trouble accidentally double and triple clicking the mouse on my computer. For all the world it feels like I just click it once, but it does a multiple click.
One time I clicked on the file manager icon, and it opened up five copies of it. Like, I don't even see how it could have clicked it that many times in the fraction of a second I press on the button. But obviously my pressure on the button isn't constant. I've noticed this too when I'm trying to mark text, and it stops marking it and tries to move it.
When I right-click to bring up a context menu, I have to be aware of any clickable links behind my menu selection, because chances are I'll activate them too. I've accidentally closed more than one program.
I've compensated by lowering the double-click window time, but since the multiple clicks happen so fast, all that's ended up doing is making it hard to intentionally double-click something. Instead, I've learned and used a lot more shortcut keys for functions, and put in shortcut keys to start programs (I had to learn how to do that in Openbox, my Linux desktop control program, not as easy as in Windows).
That said, so far I've not noticed any significant loss of motor function in my right hand. It still types fine and works smoothly, unlike my left. If it's doing that good by November, it will be doing better than my left hand did in its progression. It is just this accidental double-clicking that has started this month. While it could be due to PD progression, it is curious it started about the time I increased my dose.
So this past Wednesday night, I sent a message to my neurologist about the new symptoms. She recommended I go back to the earlier dosage for now. In the next couple of weeks, I should be able to tell if the above symptoms go away, meaning they were due to the medication and not PD itself. Or I may discover that some of them are due to PD progressing as well. Well see.
The down side if the medication is causing these new symptoms is that this medication is the primary one for treating PD. There are others, but tend to only be effective in the earlier stages. Eventually for most PD patients, they end up on high doses of Sinemet despite the dyskenesia symptoms it creates, because the pain of not being on it is worse than the side effects of the medication. That I may be having those symptoms at such a low dose and early stage isn't good news.
I've gone back to my old dosage for a day and a half now. I can feel the stiffness and pain in my arm more, but it is bearable. Hard to tell if the above symptoms have lessened or not. Might notice something this Sunday, but more likely it won't be noticeable until next Sunday, as it takes about a week for the dopamine levels to adjust to the new level in the body.
Next neurology meeting is Nov. 10th, a month away. Plan is to maintain my old dose level for the next month, see how that goes, discuss options with the new doctor, and hopefully come up with a new plan. If in two weeks the above symptoms persist, then it might indicate a progression in the PD itself.
Fun, fun fun. Not. But it is what it is. I figure God has some lessons to teach me through this. One, I'm sure, is to learn how to depend on Him more, and this broken jar of clay, less.
It has been just a little over a month, and here is how it has worked.
On the positive side, the increase dosage did help my dystonia (pain stiffness in my left arm and leg) and reduction in tremors. Didn't totally erase it, but did improve it considerably.
However, other symptoms started after increasing the dose. Some I thought was just the progression of PD, but their quick advancement happening right after the dose increase made me wonder if they were more due to side-effects of the medication. Those symptoms include:
1. My head started moving around more. Lenita noticed it, and I could tell. I noticed too at church, standing up, that my whole body wanted to rock back and forth. It felt like dykensia, like what Michael J. Fox has, which is a side-effect from taking Sinemet. But that usually only shows up on higher levels of the medications and after a few years. It shouldn't be happening yet to me.
2. My left leg started feeling antsy and weak. I really noticed this at church.
For those not familiar, we stand through most of our worship. Those that need to can sit, but mostly we stand. Especially me since I'm a reader and start reading and chanting the first service (equivalent to Matins) which takes about an hour and fifteen minutes, then I'm in the choir singing for another 2-2.15 hours for the main service. That's a total of standing and singing for 3 hours every Sunday morning. Been doing this since 1996 without too much problems.
The last three Sundays, my left leg has been giving me problems. I'm noticing it by the time the second service starts, and by the time the homily comes and I get my one chance to sit down, my left leg is feeling all wobbly and weak, and muscles are restless. I made it through the last service only by favoring my right leg. Seems if I take pressure off the left leg, it helps calm it down. But as that gets worse, my right leg will tire out faster too. If it doesn't get better, I may have to start chanting in a chair or something.
This past week, on Wednesday, I noticed the same thing happening as I started cleaning the first house. It gradually got better, though. I think moving helps it, instead of standing in one place like I do on Sunday mornings.
3. This one is the most annoying. You may recall I mentioned earlier this year that my right hand was slightly tremoring and feeling stiff, and if it followed my left hand's progression, I would be having difficulty typing with it by November.
Not too long after upping my dose, I started to have trouble accidentally double and triple clicking the mouse on my computer. For all the world it feels like I just click it once, but it does a multiple click.
One time I clicked on the file manager icon, and it opened up five copies of it. Like, I don't even see how it could have clicked it that many times in the fraction of a second I press on the button. But obviously my pressure on the button isn't constant. I've noticed this too when I'm trying to mark text, and it stops marking it and tries to move it.
When I right-click to bring up a context menu, I have to be aware of any clickable links behind my menu selection, because chances are I'll activate them too. I've accidentally closed more than one program.
I've compensated by lowering the double-click window time, but since the multiple clicks happen so fast, all that's ended up doing is making it hard to intentionally double-click something. Instead, I've learned and used a lot more shortcut keys for functions, and put in shortcut keys to start programs (I had to learn how to do that in Openbox, my Linux desktop control program, not as easy as in Windows).
That said, so far I've not noticed any significant loss of motor function in my right hand. It still types fine and works smoothly, unlike my left. If it's doing that good by November, it will be doing better than my left hand did in its progression. It is just this accidental double-clicking that has started this month. While it could be due to PD progression, it is curious it started about the time I increased my dose.
So this past Wednesday night, I sent a message to my neurologist about the new symptoms. She recommended I go back to the earlier dosage for now. In the next couple of weeks, I should be able to tell if the above symptoms go away, meaning they were due to the medication and not PD itself. Or I may discover that some of them are due to PD progressing as well. Well see.
The down side if the medication is causing these new symptoms is that this medication is the primary one for treating PD. There are others, but tend to only be effective in the earlier stages. Eventually for most PD patients, they end up on high doses of Sinemet despite the dyskenesia symptoms it creates, because the pain of not being on it is worse than the side effects of the medication. That I may be having those symptoms at such a low dose and early stage isn't good news.
I've gone back to my old dosage for a day and a half now. I can feel the stiffness and pain in my arm more, but it is bearable. Hard to tell if the above symptoms have lessened or not. Might notice something this Sunday, but more likely it won't be noticeable until next Sunday, as it takes about a week for the dopamine levels to adjust to the new level in the body.
Next neurology meeting is Nov. 10th, a month away. Plan is to maintain my old dose level for the next month, see how that goes, discuss options with the new doctor, and hopefully come up with a new plan. If in two weeks the above symptoms persist, then it might indicate a progression in the PD itself.
Fun, fun fun. Not. But it is what it is. I figure God has some lessons to teach me through this. One, I'm sure, is to learn how to depend on Him more, and this broken jar of clay, less.
Wednesday, September 10, 2014
Doctor Visit Results
Quick update after seeing my neurologist Monday morning.
One, she updated my meds. Didn't like the one medication I showed her. She said it wasn't in her "go to medications" because she felt the beneficial affect it could have didn't tend to deliver enough "punch" in exchange for the potential negative side effects. I didn't argue with her, though I'd heard/read some good things about it. Most of it anecdotal and not proven, though. I've also read a lot of doctors aren't read up on it too, and this may have been the case as she seemed to think it would require dietary restrictions when everything I've read from reputable sources say at normal doses, it doesn't require it because it inhibits MAO-B, not MAO-A which does have those restrictions. She didn't seem to be aware of that difference.
At any rate, our new med plan is my Sinemet has been doubled. Instead of taking one pill 3 times a day, I'll take two 3 times a day. Then if in 2 months I still feel I need more help, I can contact her and she re-prescribe the Ropinerole that was helping earlier this year.
Into day 2 of taking the double dose, I can tell it is helping. Less stiffness in my left arm. Still not normal, but I'll give it a week or two to build up before I decide whether I need more help.
But I got some good news! Currently I have an hour and a half drive each way to go see this neurologist. She said she recalled seeing an email about a new neurologist in the Marble Falls facility they are building. She checked, got his name, and I said I'd like to try him out. So I ended up with an appointment to see him on Nov. 10th.
This will really be helpful, since he'll only be about 10 minutes away. Saves gas money and taking up most of a day. So I'm happy about that and hope this new neurologist will work out.
That's it for now. Thanks for your prayers and support.
One, she updated my meds. Didn't like the one medication I showed her. She said it wasn't in her "go to medications" because she felt the beneficial affect it could have didn't tend to deliver enough "punch" in exchange for the potential negative side effects. I didn't argue with her, though I'd heard/read some good things about it. Most of it anecdotal and not proven, though. I've also read a lot of doctors aren't read up on it too, and this may have been the case as she seemed to think it would require dietary restrictions when everything I've read from reputable sources say at normal doses, it doesn't require it because it inhibits MAO-B, not MAO-A which does have those restrictions. She didn't seem to be aware of that difference.
At any rate, our new med plan is my Sinemet has been doubled. Instead of taking one pill 3 times a day, I'll take two 3 times a day. Then if in 2 months I still feel I need more help, I can contact her and she re-prescribe the Ropinerole that was helping earlier this year.
Into day 2 of taking the double dose, I can tell it is helping. Less stiffness in my left arm. Still not normal, but I'll give it a week or two to build up before I decide whether I need more help.
But I got some good news! Currently I have an hour and a half drive each way to go see this neurologist. She said she recalled seeing an email about a new neurologist in the Marble Falls facility they are building. She checked, got his name, and I said I'd like to try him out. So I ended up with an appointment to see him on Nov. 10th.
This will really be helpful, since he'll only be about 10 minutes away. Saves gas money and taking up most of a day. So I'm happy about that and hope this new neurologist will work out.
That's it for now. Thanks for your prayers and support.
Saturday, September 6, 2014
I'm off to see the doctor...
Will be going to see the neurologist Monday morning. Paperwork was submitted, though I discovered I could just bring it with me.
Good thing too. Lately I've noticed more stiffness in my left arm that my meds aren't getting rid of. More pain as a result, sometimes worse than other times. Hopefully the doc can update my medications.
One thing I'm going to talk about is a medication I've heard some good things about: Selegiline. It may be able to make my Sinemet dosage more effective so we don't have to raise it yet. It works by blocking the chemical process that breaks down dopamine in the body, so what is floating around in there lasts longer. We'll see if the doctor agrees with using it.
Recent weeks I've noticed more stiffness in my legs, swallowing pills sometimes doesn't work right. Noticed more signs of my right hand being affected. Lately I'm double-clicking the mouse without realizing it. Same thing that happened with my left hand in 2011 about this time: I kept double pressing letters on the keyboard. I thought it was the keyboard acting up, but it was PD. If my right hand follows the same time frame, I should notice more difficulty typing with it by November.
The most noticeable effect on my right hand comes in brushing my teeth. It is harder to do it smoothly, and at times my hand runs away with it, going fast like I'm barely maintaining control. Surprised I've not jabbed my jaw with the thing yet.
Also seems like I've had more episodes of mental dullness lately, when it almost feels like I'm only able to focus on one thing and unable to process sensory data as readily.
So hope to talk about all that with the doctor, and hopefully come away with some help.
One good thing. So far, it doesn't seem like my voice has deteriorated any more than it has before. Lower notes still aren't as solid, but most of my range is still there. As long as I can stay calm, can still sing. Directing is a bigger issue. A few Sundays ago, choir director was gone. I'm the backup. Directing with my right hand left my left arm free. As my stress went up, my left arm started flapping against my side like a fish out of water. Had to get the wife to hold onto it and rub it so I could function.
I'll try and come back for an after doctor update when I can.
Good thing too. Lately I've noticed more stiffness in my left arm that my meds aren't getting rid of. More pain as a result, sometimes worse than other times. Hopefully the doc can update my medications.
One thing I'm going to talk about is a medication I've heard some good things about: Selegiline. It may be able to make my Sinemet dosage more effective so we don't have to raise it yet. It works by blocking the chemical process that breaks down dopamine in the body, so what is floating around in there lasts longer. We'll see if the doctor agrees with using it.
Recent weeks I've noticed more stiffness in my legs, swallowing pills sometimes doesn't work right. Noticed more signs of my right hand being affected. Lately I'm double-clicking the mouse without realizing it. Same thing that happened with my left hand in 2011 about this time: I kept double pressing letters on the keyboard. I thought it was the keyboard acting up, but it was PD. If my right hand follows the same time frame, I should notice more difficulty typing with it by November.
The most noticeable effect on my right hand comes in brushing my teeth. It is harder to do it smoothly, and at times my hand runs away with it, going fast like I'm barely maintaining control. Surprised I've not jabbed my jaw with the thing yet.
Also seems like I've had more episodes of mental dullness lately, when it almost feels like I'm only able to focus on one thing and unable to process sensory data as readily.
So hope to talk about all that with the doctor, and hopefully come away with some help.
One good thing. So far, it doesn't seem like my voice has deteriorated any more than it has before. Lower notes still aren't as solid, but most of my range is still there. As long as I can stay calm, can still sing. Directing is a bigger issue. A few Sundays ago, choir director was gone. I'm the backup. Directing with my right hand left my left arm free. As my stress went up, my left arm started flapping against my side like a fish out of water. Had to get the wife to hold onto it and rub it so I could function.
I'll try and come back for an after doctor update when I can.
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.
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 . . .
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:
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:
Still a lot of pills to take each day. Ug.
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.
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.
Exercise
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.
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