I wanted to squeeze in one more post I've been needing to do before I turn my attention mostly to my experiences with the DBS (deep brain stimulation) surgery coming up.
I'm typing this one out rather than a video blog in part because my wife is napping and will soon go to bed and I don't want to disturb her and also because if I type it out, I don't have to pronounce that big drug name and make a fool out of myself. <g> You have my permission to pronounce it in your head anyway you want.
The abbreviation for this substance is TUCDA. What is it? It is ursodeoxycholic acid that has been joined to taurine, a sulfur-containing amino acid in your body important in the metabolism of fats. Thus the prefix "tauro" to the word.
So then, what is ursodeoxycholic acid (UCDA)? Glad you asked. It is a type of bile acid naturally produced in our bodies that is prescribed by doctors to dissolve a certain type of gall stone. The liver in processing UCDA combines it with taurine. To pre-combine it saves the liver some work. Plus TUCDA is a supplement sold over the counter, usually touted as a way to keep your liver healthy for people working out (I assume because some of the "supplements" they take aren't so good for the liver). However, especially if you have good drug insurance, if you can get a doctor to prescribe UCDA for you as an "off label" use, it is much cheaper than buying TUCDA from your drug store, health food store, or online.
Why would I want to buy it? For those new to the blog, I direct your attention to the posts in January and February of 2015. You may not have the time to read them all now, so I'l summarize what you'll find. I had read a couple of people's experiences with this substance, and how it seemed to improve their symptoms as well as showed promise of possibly slowing down the disease progression based on cellular studies and one small clinical trial for a related disease (ALS) where it successfully extended the patient's life indicating a slowing of progression in that disease. At the time, however, it still lacked any clinical trials for Parkinson's showing a significant number of people would be symptomatically helped by it or that it would indeed slow down the progression.
With that, and studies showing the drug was safe for most people, I decided to verify for myself whether it would help me any. Low and behold, to my surprise, it did! I sincerely didn't think it would because I'd tried so many other things that claimed to help or "cure" PD only to get zero results from them, that I fully expected this to also fall into that camp. If you read through those posts, you'll see the significant improvements in symptoms that I was having at the time that I concluded was due to taking TUCDA.
Consequently, I continued to take them after the test was over, and I did so through 2015 and 2016. During that time period, my disease did progress (few expected it to actually stop the disease, just slow it down) but it was primarily due to getting off the drug Amantadine twice. Once at the end of 2015 in order to be part of a clinical trial on an extended release Amantadine, and then the end of the clinical trial in May of 2016. Both times I had to increase my dosage of levodopa to compensate for the worsening of symptoms: from 100 mg 3x/day to 200 mg 3x/day, and then to 200 mg 4x/day due to earlier off times.
By the end of 2016 or the beginning of this year, our finances became very tight. So much so that I simply didn't have the money to pay all the bills. Since my monthly supply of TUCDA ran me around $80/month, it came down to not having the money to buy it. So I stopped and hoped for the best.
In many ways, my symptoms that I had before taking TUCDA were worse than they are now. A big part of that is in February of 2015 I embarked on an intensive exercise program that I'm still very active in. I've noticed several symptomatic improvements from that as well, and there are clinical trials proving that cardiovascular exercise does slow the progression of Parkinson's Disease. Ironically, I'm probably in the best physical shape of my life right now. Improvements from exercise I've noticed include nearly total regaining control of my bladder, a clearer head--less times I've felt a grogginess in my thinking--, improvement in gait, improvement in balance (though dyskinesia does a number on that too), being able to open packages with my bare hands (I often needed scissors to do so) are examples.
Despite all that, sometime in the Spring, I believe, I was having significant off times again. I added another half-pill of levodopa to the dose, so uped it to 250 mg 4x/day. Then in June I had to add a half of the now 250 mg pill I was taking to deal with the symptoms so that I was taking 375 mg 4x/day. The disease did seem to be progressing faster this year since getting off TUCDA, and there was nothing like getting off Amantadine that I could point to for the cause.
As some reading this know, in August, I started getting Medicare. It is the main reason I can afford to get DBS surgery at this time. One of the other benefits I get with it is paying only a $5 co-pay for the three medications I've been taking. So what cost me just over $100/month was now costing me $15.00. Cool!
Well, I happened upon those post back in Jan and Feb of 2015 and I recalled how it helped then, how things had seemed to go downhill this year, and thanks to the reduction in how much I had to pay for my drugs, I could now afford to get back on TUCDA. So I looked and found one that was even cheaper than before, costing me under $60 for a month's supply. I think I paid $54.00. So I ordered some and started taking them again.
That was about two weeks ago. What's happened since then? One of the unexpected symptom improvements last time was my voice. I had begun to lose my low bass notes. Had trouble hitting them, and if I did, had trouble holding onto them solidly. What has happened since getting off TUCDA in Jan of this year? I was retired as a chanter because of trouble singing songs I knew well. And in July, I was seriously considering whether I should continue in the choir because I couldn't hit the low notes well or with any volume. I felt I was contributing very little and would be better to go sit with the rest of the people and leave the singing to the others.
These last two Sundays, almost immediately upon taking TUCDA, just as it happened last time, my low range has returned. I was able to sing solidly in choir, and my reading voice was loud as before. I need to keep taking this if for no other reason, because it helps me retain my vocal range and voice.
The first week of taking it, I noticed my dyskinesia increased. Those are uncontrolled movements due to overstimulation of the nervous system by the drugs I'm taking. For me it involves head bobbing due to muscles in my neck tightening uncontrollably, and my left leg wiggling because it wants to move! When that happens, it is a sign that you're getting too much levodopa. So I stopped taking the extra half-pill I'd added on last time and that dose seems to be working fairly well, whereas before I had a big off time. Now the end of my dose even with this lesser amount of levodopa, is better than it was before adding that half pill in. Which indicates that either the TUCDA is improving my symptoms once again, and/or is making the levodopa and other drugs more effective.
The only other possible explanation for those improvements is I did switch my diet from ketogenic to plant-based about the same time I started taking TUCDA again. It is possible that played into it. Not as likely since it will take a few weeks for my body to switch over and the full effect of the new diet to manifest itself in symptom improvements. And nothing other than TUCDA has ever affected my vocal decline like that, and that fast. Within the first week, I could tell that by the end of playing pickle ball, when before my symptoms made it near impossible to play, now they are minor enough I can still play with some gusto. I don't think a diet change would have made that improvement that fast.
So that's my report on that front. It will be interesting to see how much I can reduce my medications after the DBS. Even if I'm able to totally get off of them, I may still take TUCDA to keep progression as slow as possible.
This Tuesday, I have my MRI done. I'll be under general anesthesia for the first time in my life. I'm hoping for it to be nothing more than taking a 2-4 hour nap. It'll go quick for me. Not so much for my wife who will be sitting in the waiting room.
Be sure to follow this blog by email using the form below the comment section if you want to stay updated on not only how the MRI goes Tuesday afternoon, but the rest of my DBS adventure.
Thanks for reading!
Showing posts with label levadopa. Show all posts
Showing posts with label levadopa. Show all posts
Monday, September 11, 2017
Friday, August 12, 2016
Medication Juggling
Finally getting an update on the blog. So much going on the last few months, it's been hard getting to it. But here it is, in case you've been wondering how I'm doing and what I've been up to lately.
Wednesday, May 25, 2016
Lots of New News
Been a while since I've updated you all on my journey to date. I've been needing to get on here and update everyone on what's happening for some time, but have been too busy to do so. Since I have a few moments, I'm seeing if I can slip it in here today. So lets get to it.
The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.
It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.
If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.
Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.
As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.
The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.
That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!
Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.
Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.
The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.
So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.
That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.
Thanks for reading!
The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.
It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.
If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.
Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.
As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.
The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.
That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!
Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.
Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.
The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.
So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.
That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.
Thanks for reading!
Wednesday, April 1, 2015
An Inside Look at Parkinson's Disease
For Parkinson's Awareness Month, which is April, I wanted to give an inside look at what it is like to have Parkinson's Disease (PD). Some people know something about it either through experience or study, but many either know nothing about it, or have a very incomplete or stereotypical understanding of it.
To do that, I'm going to take you through a list of the most common symptoms someone with the disease tends to experience and relate my experience with them as it may apply.
Which leads to a disclaimer. With PD, there is no one-size-fits-all list both on symptoms or treatments. Any one PD patient may experience only a few of these, or several. A symptom one patient has, another may not. Even the characteristic tremors are not evident in all PD patients.
Some of the symptoms I'll list I've not had . . . yet. I may never have to deal with them. Some that I have, another PD patient will never have.
If you already know this information, feel free to skip to the next heading. For those who need a fuller picture, here are the basics you'll want to know.
Currently, PD is an incurable and progressive disease, meaning, as time goes by, it becomes worse. Commonly, there are 5 stages of disease progression.
Currently I'm in stage 2, which can last for who knows how long. Could be a couple of years or 15. Stage 3 is considered a turning point in making life especially difficult due to freezing of movements and the ever present threat of falls.
There is a common saying: you don't die from Parkinson's, you die with it. True in a literal sense. However, PD is often the reason for the other things that can kill you. Most common are falls resulting in life-threatening situations (obviously the older one gets, the more likely that can happen) or immediate death by blows to the head or other significant organs. Another example is depression resulting from PD that can lead to suicide, as happened in the case of Robin Williams recently.
Currently, it is unknown what causes PD. There are a few known contributing factors, including genetics and exposure to pesticide, but those only account for a few percentage points of those who come down with the disease. It has been determined that the causative factors for it tend to be 20 to 30 years prior to the manifestation of symptoms. Which means whatever caused me to get this disease likely happened in the 90s when I was in my 30's.
Some of the processes are understood. A simplified explanation is that the disruption of normal brain-chemical functioning results in dopamine-producing neuron death. Dopamine is a critical neuron messenger in the brain which controls movement, among other functions.
As we age, we naturally lose the ability to produce dopamine, but normally it never drops below the level where it affects the ability of the central nervous system to operate efficiently. For PD patients, this loss is sped up so that at some point in life, the dopamine supply drops to a critical level, making bodily movements difficult. As the PD patient ages, those supplies get lower and lower, resulting in the progression mentioned above.
It is estimated it affects around 6% of the world's population. It is the second biggest cause of neurological disorders, behind Alzheimer's.
It is said by the time a PD patient starts showing symptoms, 85% of the brain's dopamine-producing cells have died. Due to this progression, the bulk of PD patients don't start showing symptoms until after 55 years of age, which is why it is often associated with senior adults. However, there are a large number of patients who develop symptoms earlier than that. Some as early as their 20s (like Michael J. Fox) or early 50s (like me). Like I said, there is no one-size-fits-all when it comes to PD.
The following list of symptoms are known as Parkinsonisms. That is, they are characteristic of PD. However, these symptoms are not always caused by PD. Indeed, there is currently no test to determine if a person has PD. Diagnosis is made by observing the presence of the symptoms, often prescribing a levadopa drug like Sinemet (which adds dopamine to the brain--if symptoms go away, it is a strong indicator of PD being the cause, but not definitively), and the elimination of other causes, such as strokes, ALS, multiple sclerosis, etc. One common disease that can produce tremors, for instance, is Essential Tremors. Like PD, they don't know what causes it, there is no cure, but isn't nearly as long-term debilitating as PD.
So if you have or know someone who has any of these symptoms, it doesn't necessarily mean it is PD. It does mean it is time to go see your doctor to find out what it is.
With that said, below is an non-exhaustive list of the most common PD symptoms and my experience, if any, with them.
This is often one of the first symptoms people may notice. With it goes the ability to taste as well too. One commentor on a form I frequent recently commented that all wine taste the same to him now, so he no longer feels a need to splurge for the more expensive wines.
This is also a good spot to note that not all PD symptoms are motor related. There are several, as you'll see, that have little to do with movement ability.
So far, the loss of smell is one symptom I've skipped. If I've lost any smelling ability, it hasn't been enough to be noticeable. I may experience this later, or maybe never.
This is another early non-motor symptom. Due to the changes in the brain, plus the news that one has a non-curable, progressively debilitating disease, is depression. Aside from making life seem dreary and hopeless, it can lead to suicide if it gets bad enough.
Thankfully I've not experienced much depression thus far. The only depression I've had in the last four years I know wasn't due to PD, and happened before PD symptoms set in. It's possible PD may have contributed to it, but it only lasted a month and I was able to exit the depression once I dealt with the actual issues underlying it.
This is a condition that can have several causes. It refers to a lack of muscle tone and stiffness in a limb or other parts of the body. It can be painful.
With PD induced dystonia, the lack of dopamine produces erratic signals to the muscle, causing it to be in a continual state of contractions. This produces stiffness and pain, and lack of usability of that limb.
I have this primarily in my left arm, and to some degree in my left leg/foot. When I'm focused on something physical, I also experience it in my mouth.
The last time I took a "holiday" from my Sinemet medication, in part to see how much symptoms had developed, by the end of five days my left arm was so stiff and in pain it was unusable for task like typing. Needless to say I won't be trying that again.
This is the first symptom I noticed back in 2012, though I didn't know what it was at the time. When I was driving, my left hand involuntarily clamped hard on the steering wheel, causing tightness and pain in my left hand. The second symptom was pain in my shoulder when bringing my left arm over my head for a swimming stroke. The third symptom I noticed toward the end of that year was difficulty in typing as smoothly and quickly with my left hand--the loss of fine motor control of the fingers. All those resulted from dystonia.
Currently I always feel some stiffness and pain in that arm, but it gets better during peak periods of my medication, and worse towards the beginning and ends of my doses (known as off times). Like right now I'm 20 minutes from taking my next Sinemet pill, and typing is slow and difficult, with a constant dull pain along my arm. Thankfully, though minor tremors have migrated to my right arm/hand, it hasn't developed any dystonia so far. Hopefully it stays that way for a few years.
This is why if you visit with me in person, you'll notice I stretch my left arm, hand, and fingers a lot, and rub them when it gets bad, as it seems to help.
Another way a PD patient can get dystonia is from the levadopa medication itself. It is a subset of dyskinesia which we'll talk about in a bit. With the infusion of dopamine through drugs, the central nervous system's connections with the brain get over excited. One result of this is repeated contractions of a body part.
For me it is toe curling, specifically my left foot toe next to my small toe. Consequently, unlike my left arm's dystonia, my left foot's dystonia gets worse during a peak dose of Sinemet. If I'm on my feet much, that left toe begins to hurt as it is constantly pushing into the floor or bottom of my shoe. Sometimes it causes me to limp.
As the disease progresses, the Sinemet becomes less effective and the affected limbs more painful.
This is the classic symptom most people think of in relation to PD. Due to motor-control neurons mis-firing, because of the lack of dopamine in the brain, erratic signals are sent to certain muscle groups, causing them to jerk or do repetitive motions.
One common motion you'll see is called "pill rolling," as the thumb moves in a circular motion around the fingers as if rolling a pill between them. Not all PD patients do that. I've experienced it some in my left hand when tremors were bad, but it has been a while since I've done that mostly likely thanks to my medicine.
This was the fourth symptom I noticed late in 2012. My left hand developed mild tremors. Over the course of 2013, it became noticeably worse and led me to go see a doctor. By the end of 2013, I had been diagnosed and was on medication for it. About the middle of 2014, my right hand began to show signs of tremors, indicating the disease was spreading to my right side.
Aside from making some task more difficult, the tremors make typing more of a chore. Frequently, my left fingers will be resting on the keyboard, and a finger will twitch, causing involuntary keystrokes that usually don't belong on the page. That combined with the dystonia means when I type, I often do a lot of backspacing.
My medications currently keep my tremors under control most of the time, except during off-times: at the beginning and end of a dose. However, stress tends to bring them out in full force. Like the last time I was stopped by the police for a taillight being out. When he asked me for my ID, my arm and hand were shaking like a leaf in a strong wind. Even minor stress can uncover some tremors at times, like focusing on something intensely. For example, when I do Yoga or Pilates, my hands tend to tremor some.
Over time, the medications will become less effective, requiring more extreme measures like Deep Brain Stimulation surgery (a pacemaker for the brain). Eventually, if I live long enough, not much will keep me from tremoring away. That usually happens in the more advanced stages: 4 and 5.
This is another form of uncontrolled movement. It is not caused by PD itself, but is a side-effect from using levadopa therapy. Since taking dopamine straight will not get to the brain, thanks to the brain's blood barrier, the primary treatment for PD symptoms is using a precursor of dopamine, levadopa, which can cross the blood-brain barrier. It then gets converted to dopamine once inside.
By supplying the brain with additional dopamine, it helps to replace that which is missing due to cell death, allowing the brain to operate normally. It effectively reduces many PD symptoms, sometimes making the person feel perfectly normal again, especially in the early stages. I'm one of the more unlucky ones in that regard, in that it has never made me feel perfectly normal, but it does significantly reduce the intensity level of my symptoms.
However, as mentioned above, it also has the side-effect of over-exciting the brain and central nervous system's connections. This results in a different form of uncontrolled movements resulting not from the disease, but extended use of the medicine.
The average time a person might expect to see dyskinesia symptoms after starting levadopa therapy is around 6 years, so I've read. Usually it takes higher doses over a period of time before symptoms manifest.
Unfortunately for me, I've beat that average by a mile. I took some levadopa in 2013 for about one or two months. Then I was off it until restarting in January of 2014. In September of 2014, upon doubling my Sinemet dose (one form of levadopa commonly used), I experienced my first dyskinesia symptoms. So we dropped it back down at the end of September and the symptoms disappeared.
Then my new neurologist prescribed Azilect. It isn't levadopa, but inhibits the breakdown of dopamine in the brain so it builds up a bigger supply. In effect, it magnifies the effect of any levadopa one is taking. When we started the 0.5 mg/day dose, I noticed a reappearance of dyskinesia, but fairly minor and manageable. Since we've upped it to the 1 mg/day dose, the dyskinesia has become significantly worse.
The difference between these uncontrolled movements and tremors is that these are smoother and bigger, and not limited to my hands. The primary areas it affects are my head, causing it to bob around, my left calf muscle and foot, and a general wobbly feel in my whole body. It feels like someone is putting their hand on me and pushing it around. So a lot less jerky like tremors. It can also make one talk less smooth, sort of stuttering.
A good example of this symptom is Michael J. Fox. If you pull up any of his recent interviews on YouTube, especially between the time of 2000 - 2010, you'll see him wiggling around a lot. Recently they came out with medication that helps reduce those effects, and I believe he has been using it, so real recent interviews he's not quite as bad. The bad news is that medication generally only last around six months.
As I mentioned previously, another effect of this symptom is additional dystonia due to the uncontrolled movements. Currently, I experience that in my left toes and my neck, which tires when my head moves around too much.
Probably the hardest aspect of this symptom to deal with so far has been standing or being on my feet for long periods of time. The hardest of those tends to be at church when I'm on my feet without moving much for around three hours. My left leg gets very antsy, like restless leg syndrome, making it an endurance exercise at times. That combined with the pain in my left toe make for a "fun" service.
Currently I'm not as bad as what you'll see if you've seen Michael J. Fox. But I'm on the road to it unless some changes in my medications eliminate it.
Ah, everyone's favorite subject. PD tends to make one more prone to constipation. Let's just say I've experienced some real struggles with this one. I used to treat it by eating a good supply of prunes every night, but found a magnesium supplement works quite well. I take a magnesium taurate supplement twice a day, which gives me 200 mg per day. Haven't had any problems with this for months.
Nuff said.
PD can affect how well a person can control their excretion processes. I've had more than one "accident" on both ends of the system. Sinemet seems to have helped, as has taking a good probiotic (PD patients tend to be missing whole families of bacteria in the gut).
My two biggest problems with this so far relates to the bladder. One, at times I've lost my early warning system. When I start feeling I need to go, I've got precious little time before it becomes desperate. This makes taking trips a real pain at times.
Two, there are times when I feel I need to go shortly after having gone. Sometimes it is a dribble, other times it is substantial. Oddly enough it tends to happen most when I'm working in the kitchen. One time making breakfast I had to stop what I was doing 5 times to go. Very annoying. But it comes and goes. Most of the time I don't have this problem.
This is one symptom many doctors are not even aware of. Studies have shown that it affects around 50% of PD patients. It doesn't appear to be due to medications, but the disease itself. It too can be one of the early symptoms.
I first experienced this in September of 2012, shortly before my difficulty with typing set in. I caught what I believed was a cold, but after the cold symptoms disappeared, the runny nose stayed and has never gone totally away. At times it has been better, but currently I blow my nose several times a day.
Incidentally, earlier in 2012 I began having a chronic problem with boils. I discovered it was caused by an infection in the sinus cavities. After applying an antibiotic ointment for a period of time, the boils stopped. It wasn't long after that when the dystonia in the left hand began.
My doctor said the symptoms weren't related, that I likely had developed allergies and prescribed an antihistamine. It wasn't until last year that I discovered the above article and the link between the two.
Certain nasal sprays have reportedly helped.
This refers to slowness of movement and reduced movement. Unlike other symptoms of PD, this one is present in all cases. The most common examples are lack of swing in an arm while walking, slowness to initiate movements, and small handwriting.
I've experienced this symptom as well. My left arm doesn't swing well unless I consciously force it. My handwriting does have a tendency to shrink in size. There are times I feel like I'm moving through molasses and I'm slow to respond to stimuli.
I believe my medication has helped with this some, but it hasn't gone away.
This was an early symptom my brother noticed. Many PD patients tend to have an expressionless face, like they're not all there. It was also one of the first symptoms my neurologist noticed upon my first visit.
The important thing to know is that just because someone with PD has a blank face, it doesn't mean they've checked out. It is simply one symptom of PD where facial muscles have lost control.
Nothing like drooling to make you feel you're reverting to your baby days. But it is a common symptom of PD. Obviously a little embarrassing in public.
I did have a period where I kept catching drool trying to escape from my mouth. My medications have kept it under control thus far, so you're not likely to see me drooling any time soon. But as medications become less effective, I'm sure it will be part of my future.
Around 60% of PD patients experience dementia. Dementia isn't merely forgetting things, but loss of ability to recognize people or events, confusion in thinking, loss of cognitive functions, and hallucinations, among others.
To date, while I think some of my thinking processes have slowed, I've not exhibited any signs of dementia. But it tends to manifest itself in the later stages of PD, so I'm by no means out of the woods. Of the symptoms, this is probably the one I fear the most, not just for me, but for my wife who would be taking care of me.
So far, so good. Still a lot of this journey left to travel, though. All in God's hands.
Difficulty swallowing correctly is a fairly common PD symptom. Not so much in being able to swallow, but being able to swallow without getting liquid into your lungs. The flap that should cover the windpipe when you swallow doesn't work as expected.
One common result of this in advanced cases is the risk of pneumonia, and with it, possible death.
Normally I don't experience this. The only exception is when swallowing pills. It is common at least once when taking my supplements to get water down my windpipe. I've yet to have any problem with normal drinking, but it is likely a problem I'll deal with in the future.
Many PD patients experience problems with sleeping. Common is the presence of tremors and dystonia pain makes falling asleep hard. Once asleep, those tend to disappear. It is the getting to sleep that can be a problem.
Another common sleep problem is the need to frequently go to the bathroom. Many PD patients find themselves waking up in the middle of the night frequently due to this. Then if symptoms make falling back asleep hard, it is a double whammy.
Likewise, some experience the opposite. Due to lack of energy some feel a need to sleep more than usual, leaving little time for productive task completion.
There are also studies showing that PD can negatively affect REM sleep, making one feel less rested after a night of sleep.
To date, I've rarely had trouble getting to sleep and getting enough. I've always been a good sleeper. So to date, I've escaped this symptom.
Frequently, PD tends to weaken the affected muscles. As the disease progresses, it gets worse.
I've noticed this to a degree. I find opening packages or unscrewing lids from jars to be much harder than it has been in the past. Scissors have become my best friend in that regard. I can still lift a decent amount of weight, but I've noticed in my left arm that ability has been reduced.
I've been doing more resistance exercises of late to help with that issue.
Another critical problem among many PD patients is balance issues. As noted above, this is especially critical in stage 3 of the disease, when falling becomes more of a threat. At each visit, my neurologist ask if I've had any incidents of falling in the past few months. As I mentioned at the beginning, falling is one of the main ways PD patients experience injury, life-threatening complications, or even death.
I can tell my balance has been affected. I'm a little more unsteady on my feet than I used to be. To date, though, I've not had any real falls due to this. The only one that could be attributed to it, and it was more a matter of getting my feet tangled in a vacuum cleaner hose, was a slow, controlled fall, in part due to the table I tried to steady myself with not staying put, but slowly scooting out.
During Yoga and Pilates, we do some balance exercises. I currently find these difficult not to end up putting my foot down to keep from falling. I'm doing Tai Chi which is known for helping with this problem. Looks like when I get to phase 3, it will be an issue, unless my work now can head it off or reduce it. We'll see.
As I said, the above list isn't exhaustive. Each person may have other symptoms not listed. I may have forgotten even some of my own symptoms to mention. However, the above list should help to give you a clearer picture of what many PD patients face with this disease. It isn't just tremors that are the issue, but a whole range of issues.
My treatment plan involves exercise (currently Zumba, Pilates, Yoga, Tia Chi, lifting weights, and swimming), good nutrition, and a combination of supplements and prescribed medications. My symptoms would be much worse without them.
Feel free to subscribe to this blog (top right) using either RSS feed or email, if you wish to follow my journey with this disease. Thanks for reading.
To do that, I'm going to take you through a list of the most common symptoms someone with the disease tends to experience and relate my experience with them as it may apply.
Which leads to a disclaimer. With PD, there is no one-size-fits-all list both on symptoms or treatments. Any one PD patient may experience only a few of these, or several. A symptom one patient has, another may not. Even the characteristic tremors are not evident in all PD patients.
Some of the symptoms I'll list I've not had . . . yet. I may never have to deal with them. Some that I have, another PD patient will never have.
What is the basis for PD?
If you already know this information, feel free to skip to the next heading. For those who need a fuller picture, here are the basics you'll want to know.
Currently, PD is an incurable and progressive disease, meaning, as time goes by, it becomes worse. Commonly, there are 5 stages of disease progression.
- Stage 1: Minor symptoms that don't impair daily life.
- Stage 2: Symptoms cause tasks to take longer, but are still doable. Symptoms often progress to the unaffected side during this stage.
- Stage 3: Characterized by balance issues, freezing, tendency to fall.
- Stage 4: Many task are not able to be completed without assistance. Walking often needs a walker or other device. Can't live alone due to lack of mobility and tendency to fall.
- Stage 5: Wheelchair bound, needing continual care, unable to do much for themselves.
Currently I'm in stage 2, which can last for who knows how long. Could be a couple of years or 15. Stage 3 is considered a turning point in making life especially difficult due to freezing of movements and the ever present threat of falls.
There is a common saying: you don't die from Parkinson's, you die with it. True in a literal sense. However, PD is often the reason for the other things that can kill you. Most common are falls resulting in life-threatening situations (obviously the older one gets, the more likely that can happen) or immediate death by blows to the head or other significant organs. Another example is depression resulting from PD that can lead to suicide, as happened in the case of Robin Williams recently.
Currently, it is unknown what causes PD. There are a few known contributing factors, including genetics and exposure to pesticide, but those only account for a few percentage points of those who come down with the disease. It has been determined that the causative factors for it tend to be 20 to 30 years prior to the manifestation of symptoms. Which means whatever caused me to get this disease likely happened in the 90s when I was in my 30's.
Some of the processes are understood. A simplified explanation is that the disruption of normal brain-chemical functioning results in dopamine-producing neuron death. Dopamine is a critical neuron messenger in the brain which controls movement, among other functions.
As we age, we naturally lose the ability to produce dopamine, but normally it never drops below the level where it affects the ability of the central nervous system to operate efficiently. For PD patients, this loss is sped up so that at some point in life, the dopamine supply drops to a critical level, making bodily movements difficult. As the PD patient ages, those supplies get lower and lower, resulting in the progression mentioned above.
It is estimated it affects around 6% of the world's population. It is the second biggest cause of neurological disorders, behind Alzheimer's.
It is said by the time a PD patient starts showing symptoms, 85% of the brain's dopamine-producing cells have died. Due to this progression, the bulk of PD patients don't start showing symptoms until after 55 years of age, which is why it is often associated with senior adults. However, there are a large number of patients who develop symptoms earlier than that. Some as early as their 20s (like Michael J. Fox) or early 50s (like me). Like I said, there is no one-size-fits-all when it comes to PD.
Parkinsonisms
The following list of symptoms are known as Parkinsonisms. That is, they are characteristic of PD. However, these symptoms are not always caused by PD. Indeed, there is currently no test to determine if a person has PD. Diagnosis is made by observing the presence of the symptoms, often prescribing a levadopa drug like Sinemet (which adds dopamine to the brain--if symptoms go away, it is a strong indicator of PD being the cause, but not definitively), and the elimination of other causes, such as strokes, ALS, multiple sclerosis, etc. One common disease that can produce tremors, for instance, is Essential Tremors. Like PD, they don't know what causes it, there is no cure, but isn't nearly as long-term debilitating as PD.
So if you have or know someone who has any of these symptoms, it doesn't necessarily mean it is PD. It does mean it is time to go see your doctor to find out what it is.
With that said, below is an non-exhaustive list of the most common PD symptoms and my experience, if any, with them.
Loss of smell
This is often one of the first symptoms people may notice. With it goes the ability to taste as well too. One commentor on a form I frequent recently commented that all wine taste the same to him now, so he no longer feels a need to splurge for the more expensive wines.
This is also a good spot to note that not all PD symptoms are motor related. There are several, as you'll see, that have little to do with movement ability.
So far, the loss of smell is one symptom I've skipped. If I've lost any smelling ability, it hasn't been enough to be noticeable. I may experience this later, or maybe never.
Depression
This is another early non-motor symptom. Due to the changes in the brain, plus the news that one has a non-curable, progressively debilitating disease, is depression. Aside from making life seem dreary and hopeless, it can lead to suicide if it gets bad enough.
Thankfully I've not experienced much depression thus far. The only depression I've had in the last four years I know wasn't due to PD, and happened before PD symptoms set in. It's possible PD may have contributed to it, but it only lasted a month and I was able to exit the depression once I dealt with the actual issues underlying it.
Dystonia
This is a condition that can have several causes. It refers to a lack of muscle tone and stiffness in a limb or other parts of the body. It can be painful.
With PD induced dystonia, the lack of dopamine produces erratic signals to the muscle, causing it to be in a continual state of contractions. This produces stiffness and pain, and lack of usability of that limb.
I have this primarily in my left arm, and to some degree in my left leg/foot. When I'm focused on something physical, I also experience it in my mouth.
The last time I took a "holiday" from my Sinemet medication, in part to see how much symptoms had developed, by the end of five days my left arm was so stiff and in pain it was unusable for task like typing. Needless to say I won't be trying that again.
This is the first symptom I noticed back in 2012, though I didn't know what it was at the time. When I was driving, my left hand involuntarily clamped hard on the steering wheel, causing tightness and pain in my left hand. The second symptom was pain in my shoulder when bringing my left arm over my head for a swimming stroke. The third symptom I noticed toward the end of that year was difficulty in typing as smoothly and quickly with my left hand--the loss of fine motor control of the fingers. All those resulted from dystonia.
Currently I always feel some stiffness and pain in that arm, but it gets better during peak periods of my medication, and worse towards the beginning and ends of my doses (known as off times). Like right now I'm 20 minutes from taking my next Sinemet pill, and typing is slow and difficult, with a constant dull pain along my arm. Thankfully, though minor tremors have migrated to my right arm/hand, it hasn't developed any dystonia so far. Hopefully it stays that way for a few years.
This is why if you visit with me in person, you'll notice I stretch my left arm, hand, and fingers a lot, and rub them when it gets bad, as it seems to help.
Another way a PD patient can get dystonia is from the levadopa medication itself. It is a subset of dyskinesia which we'll talk about in a bit. With the infusion of dopamine through drugs, the central nervous system's connections with the brain get over excited. One result of this is repeated contractions of a body part.
For me it is toe curling, specifically my left foot toe next to my small toe. Consequently, unlike my left arm's dystonia, my left foot's dystonia gets worse during a peak dose of Sinemet. If I'm on my feet much, that left toe begins to hurt as it is constantly pushing into the floor or bottom of my shoe. Sometimes it causes me to limp.
As the disease progresses, the Sinemet becomes less effective and the affected limbs more painful.
Tremors
This is the classic symptom most people think of in relation to PD. Due to motor-control neurons mis-firing, because of the lack of dopamine in the brain, erratic signals are sent to certain muscle groups, causing them to jerk or do repetitive motions.
One common motion you'll see is called "pill rolling," as the thumb moves in a circular motion around the fingers as if rolling a pill between them. Not all PD patients do that. I've experienced it some in my left hand when tremors were bad, but it has been a while since I've done that mostly likely thanks to my medicine.
This was the fourth symptom I noticed late in 2012. My left hand developed mild tremors. Over the course of 2013, it became noticeably worse and led me to go see a doctor. By the end of 2013, I had been diagnosed and was on medication for it. About the middle of 2014, my right hand began to show signs of tremors, indicating the disease was spreading to my right side.
Aside from making some task more difficult, the tremors make typing more of a chore. Frequently, my left fingers will be resting on the keyboard, and a finger will twitch, causing involuntary keystrokes that usually don't belong on the page. That combined with the dystonia means when I type, I often do a lot of backspacing.
My medications currently keep my tremors under control most of the time, except during off-times: at the beginning and end of a dose. However, stress tends to bring them out in full force. Like the last time I was stopped by the police for a taillight being out. When he asked me for my ID, my arm and hand were shaking like a leaf in a strong wind. Even minor stress can uncover some tremors at times, like focusing on something intensely. For example, when I do Yoga or Pilates, my hands tend to tremor some.
Over time, the medications will become less effective, requiring more extreme measures like Deep Brain Stimulation surgery (a pacemaker for the brain). Eventually, if I live long enough, not much will keep me from tremoring away. That usually happens in the more advanced stages: 4 and 5.
Dyskinesia
This is another form of uncontrolled movement. It is not caused by PD itself, but is a side-effect from using levadopa therapy. Since taking dopamine straight will not get to the brain, thanks to the brain's blood barrier, the primary treatment for PD symptoms is using a precursor of dopamine, levadopa, which can cross the blood-brain barrier. It then gets converted to dopamine once inside.
By supplying the brain with additional dopamine, it helps to replace that which is missing due to cell death, allowing the brain to operate normally. It effectively reduces many PD symptoms, sometimes making the person feel perfectly normal again, especially in the early stages. I'm one of the more unlucky ones in that regard, in that it has never made me feel perfectly normal, but it does significantly reduce the intensity level of my symptoms.
However, as mentioned above, it also has the side-effect of over-exciting the brain and central nervous system's connections. This results in a different form of uncontrolled movements resulting not from the disease, but extended use of the medicine.
The average time a person might expect to see dyskinesia symptoms after starting levadopa therapy is around 6 years, so I've read. Usually it takes higher doses over a period of time before symptoms manifest.
Unfortunately for me, I've beat that average by a mile. I took some levadopa in 2013 for about one or two months. Then I was off it until restarting in January of 2014. In September of 2014, upon doubling my Sinemet dose (one form of levadopa commonly used), I experienced my first dyskinesia symptoms. So we dropped it back down at the end of September and the symptoms disappeared.
Then my new neurologist prescribed Azilect. It isn't levadopa, but inhibits the breakdown of dopamine in the brain so it builds up a bigger supply. In effect, it magnifies the effect of any levadopa one is taking. When we started the 0.5 mg/day dose, I noticed a reappearance of dyskinesia, but fairly minor and manageable. Since we've upped it to the 1 mg/day dose, the dyskinesia has become significantly worse.
The difference between these uncontrolled movements and tremors is that these are smoother and bigger, and not limited to my hands. The primary areas it affects are my head, causing it to bob around, my left calf muscle and foot, and a general wobbly feel in my whole body. It feels like someone is putting their hand on me and pushing it around. So a lot less jerky like tremors. It can also make one talk less smooth, sort of stuttering.
A good example of this symptom is Michael J. Fox. If you pull up any of his recent interviews on YouTube, especially between the time of 2000 - 2010, you'll see him wiggling around a lot. Recently they came out with medication that helps reduce those effects, and I believe he has been using it, so real recent interviews he's not quite as bad. The bad news is that medication generally only last around six months.
As I mentioned previously, another effect of this symptom is additional dystonia due to the uncontrolled movements. Currently, I experience that in my left toes and my neck, which tires when my head moves around too much.
Probably the hardest aspect of this symptom to deal with so far has been standing or being on my feet for long periods of time. The hardest of those tends to be at church when I'm on my feet without moving much for around three hours. My left leg gets very antsy, like restless leg syndrome, making it an endurance exercise at times. That combined with the pain in my left toe make for a "fun" service.
Currently I'm not as bad as what you'll see if you've seen Michael J. Fox. But I'm on the road to it unless some changes in my medications eliminate it.
Constipation
Ah, everyone's favorite subject. PD tends to make one more prone to constipation. Let's just say I've experienced some real struggles with this one. I used to treat it by eating a good supply of prunes every night, but found a magnesium supplement works quite well. I take a magnesium taurate supplement twice a day, which gives me 200 mg per day. Haven't had any problems with this for months.
Nuff said.
Bladder/Bowel Control
PD can affect how well a person can control their excretion processes. I've had more than one "accident" on both ends of the system. Sinemet seems to have helped, as has taking a good probiotic (PD patients tend to be missing whole families of bacteria in the gut).
My two biggest problems with this so far relates to the bladder. One, at times I've lost my early warning system. When I start feeling I need to go, I've got precious little time before it becomes desperate. This makes taking trips a real pain at times.
Two, there are times when I feel I need to go shortly after having gone. Sometimes it is a dribble, other times it is substantial. Oddly enough it tends to happen most when I'm working in the kitchen. One time making breakfast I had to stop what I was doing 5 times to go. Very annoying. But it comes and goes. Most of the time I don't have this problem.
Runny Nose (Rhinorrhea)
This is one symptom many doctors are not even aware of. Studies have shown that it affects around 50% of PD patients. It doesn't appear to be due to medications, but the disease itself. It too can be one of the early symptoms.
I first experienced this in September of 2012, shortly before my difficulty with typing set in. I caught what I believed was a cold, but after the cold symptoms disappeared, the runny nose stayed and has never gone totally away. At times it has been better, but currently I blow my nose several times a day.
Incidentally, earlier in 2012 I began having a chronic problem with boils. I discovered it was caused by an infection in the sinus cavities. After applying an antibiotic ointment for a period of time, the boils stopped. It wasn't long after that when the dystonia in the left hand began.
My doctor said the symptoms weren't related, that I likely had developed allergies and prescribed an antihistamine. It wasn't until last year that I discovered the above article and the link between the two.
Certain nasal sprays have reportedly helped.
Bradykinesia
This refers to slowness of movement and reduced movement. Unlike other symptoms of PD, this one is present in all cases. The most common examples are lack of swing in an arm while walking, slowness to initiate movements, and small handwriting.
I've experienced this symptom as well. My left arm doesn't swing well unless I consciously force it. My handwriting does have a tendency to shrink in size. There are times I feel like I'm moving through molasses and I'm slow to respond to stimuli.
I believe my medication has helped with this some, but it hasn't gone away.
Blank Face
This was an early symptom my brother noticed. Many PD patients tend to have an expressionless face, like they're not all there. It was also one of the first symptoms my neurologist noticed upon my first visit.
The important thing to know is that just because someone with PD has a blank face, it doesn't mean they've checked out. It is simply one symptom of PD where facial muscles have lost control.
Drooling
Nothing like drooling to make you feel you're reverting to your baby days. But it is a common symptom of PD. Obviously a little embarrassing in public.
I did have a period where I kept catching drool trying to escape from my mouth. My medications have kept it under control thus far, so you're not likely to see me drooling any time soon. But as medications become less effective, I'm sure it will be part of my future.
Dementia
Around 60% of PD patients experience dementia. Dementia isn't merely forgetting things, but loss of ability to recognize people or events, confusion in thinking, loss of cognitive functions, and hallucinations, among others.
To date, while I think some of my thinking processes have slowed, I've not exhibited any signs of dementia. But it tends to manifest itself in the later stages of PD, so I'm by no means out of the woods. Of the symptoms, this is probably the one I fear the most, not just for me, but for my wife who would be taking care of me.
So far, so good. Still a lot of this journey left to travel, though. All in God's hands.
Swallowing
Difficulty swallowing correctly is a fairly common PD symptom. Not so much in being able to swallow, but being able to swallow without getting liquid into your lungs. The flap that should cover the windpipe when you swallow doesn't work as expected.
One common result of this in advanced cases is the risk of pneumonia, and with it, possible death.
Normally I don't experience this. The only exception is when swallowing pills. It is common at least once when taking my supplements to get water down my windpipe. I've yet to have any problem with normal drinking, but it is likely a problem I'll deal with in the future.
Sleep Disruption
Many PD patients experience problems with sleeping. Common is the presence of tremors and dystonia pain makes falling asleep hard. Once asleep, those tend to disappear. It is the getting to sleep that can be a problem.
Another common sleep problem is the need to frequently go to the bathroom. Many PD patients find themselves waking up in the middle of the night frequently due to this. Then if symptoms make falling back asleep hard, it is a double whammy.
Likewise, some experience the opposite. Due to lack of energy some feel a need to sleep more than usual, leaving little time for productive task completion.
There are also studies showing that PD can negatively affect REM sleep, making one feel less rested after a night of sleep.
To date, I've rarely had trouble getting to sleep and getting enough. I've always been a good sleeper. So to date, I've escaped this symptom.
Weak Muscles
Frequently, PD tends to weaken the affected muscles. As the disease progresses, it gets worse.
I've noticed this to a degree. I find opening packages or unscrewing lids from jars to be much harder than it has been in the past. Scissors have become my best friend in that regard. I can still lift a decent amount of weight, but I've noticed in my left arm that ability has been reduced.
I've been doing more resistance exercises of late to help with that issue.
Balance Issues
Another critical problem among many PD patients is balance issues. As noted above, this is especially critical in stage 3 of the disease, when falling becomes more of a threat. At each visit, my neurologist ask if I've had any incidents of falling in the past few months. As I mentioned at the beginning, falling is one of the main ways PD patients experience injury, life-threatening complications, or even death.
I can tell my balance has been affected. I'm a little more unsteady on my feet than I used to be. To date, though, I've not had any real falls due to this. The only one that could be attributed to it, and it was more a matter of getting my feet tangled in a vacuum cleaner hose, was a slow, controlled fall, in part due to the table I tried to steady myself with not staying put, but slowly scooting out.
During Yoga and Pilates, we do some balance exercises. I currently find these difficult not to end up putting my foot down to keep from falling. I'm doing Tai Chi which is known for helping with this problem. Looks like when I get to phase 3, it will be an issue, unless my work now can head it off or reduce it. We'll see.
Summary
As I said, the above list isn't exhaustive. Each person may have other symptoms not listed. I may have forgotten even some of my own symptoms to mention. However, the above list should help to give you a clearer picture of what many PD patients face with this disease. It isn't just tremors that are the issue, but a whole range of issues.
My treatment plan involves exercise (currently Zumba, Pilates, Yoga, Tia Chi, lifting weights, and swimming), good nutrition, and a combination of supplements and prescribed medications. My symptoms would be much worse without them.
Feel free to subscribe to this blog (top right) using either RSS feed or email, if you wish to follow my journey with this disease. Thanks for reading.
Saturday, April 5, 2014
Medication Experimentation - Part One
When my doctor said he felt pretty sure I had Parkinson's, my initial reaction was sort of nothing. I had a passing awareness of the disease, that it caused tremors, but that was about it. I had no idea how bad of a thing it was, or not.
So naturally when I returned home, I hopped on the internet and started researching both Parkinson's, Essential Tremors, as well as Multiple Sclerosis. I quickly ruled out MS. But for a period of time I thought I might have ET instead of PD. But I began to realize the PD symptoms fit what I was experiencing more so than ET.
As mentioned before, I went a few months before deciding to take the Sinemet (a combination of Levadopa and Carbadopa that stimulates dopamine production in the brain to replace what is missing) to see whether or not it helped my symptoms.
With PD, also both ET and MS, the medical establishment doesn't know why people get it, except in a small percentage of cases (genetic and exposure to certain chemicals), nor is there a cure for it. It is a progressive disease. Currently, all doctors can do is treat the symptoms. There is one potential drug in the final stage of testing that has the potential to slow or halt PD progressing in some people. That is a few years down the road, however, and won't work on everyone. Right now, all doctors can do is prescribe medicine to manage the symptoms. The progression of the disease goes on, unchecked. Some even say the typical PD medications end up accelerating PD progression. Also medically, levadopa drugs like Sinemet tend to bring on dyskinesia with long-term use, which can be just as debilitating as PD itself. Michal J. Fox is a good example of someone with dyskinesia.
While other diseases can be more life-threatening, many of them can also be cured and the person eventually return to a normal life. Whereas with PD, the common saying is you don't tend to die from PD, but you die with it.
But when it comes to trying different things and "drugs" it also has its benefits. Trying out other things, as long as they are safe to do so, isn't going to speed up or slow down PD itself. Even deciding to take nothing isn't going to speed up the march to ending up in a wheelchair should one live that long.
I started taking the Sinemet in August of 2013. I took only that for about two weeks. During that time, it did seem my symptoms lessened, but I didn't get the "all back to normal" experience that some do with the drug. I heard about a potential alternative treatment: coconut oil. The lady who promotes this had a husband with Alzheimer's. He was getting worse. She learned about coconut oil's medium-chain triglycerides that can pass through the brain barrier (a barrier that filters out bad stuff from getting into the brain area) and provide energy lacking in those patients from the inability of the brain to produce its own energy from glucose. At least, that's the theory. It has yet to be tested in clinical trials, primarily because there is no profit potential for drug companies to do so, and no donations have been given.
What I've learned is that there is an abundance of theories of what causes PD and how to fix it. So one has to be careful, especially if they are selling something. But when it made sense to give something a try, why not as long as it is safe to eat/take?
So I didn't buy the lady's book, but our grocery store carried a decently priced jar of organic, cold-pressed, pure coconut oil. Most of them are expensive, but while still not cheap, we found a large jar for around $10. The LuAnn version didn't have the quality needed to assure it would have the MCT needed.
I started taking 4 tablespoons in my morning oatmeal. The lady recommended 8. Tried to figure out what else to put it in. Tried my fruit smoothie, but I didn't like it. Oatmeal seemed to be the only thing I could put it in and eat it. And 8 T was too much for one bowl. Plus, while I'd heard about all the health benefits of coconut oil, I didn't want to overdo it and end up with a heart attack trying to fix PD.
So I stuck with 4 T a day. If I noticed any significant improvement, I'd up it to 8, somehow. So for another two weeks, I took coconut oil everyday except Sundays and a few Saturdays. During that time, I did seem to improve, but I had no idea whether it was the coconut oil, or the cumulative effects of the Sinemet.
To find out which one was the help and to find out if a worsening of symptoms might confirm the Sinemet was helping, I decided to stop taking the drug. By the end of one week being off of Sinemet, but still taking coconut oil, my symptoms got noticeably worse. It verified two things. One, the coconut oil wasn't doing anything for my PD symptoms; it was all Sinemet. Two, it confirmed that the Sinemet was helping for sure. Another confirmation that what I had was PD.
So I wasn't surprised when my nuerologist confirmed I had PD. I would have been surprised if she'd said anything different at that point. That said, while the coconut oil didn't seem to help my symptoms, it was still possible that it did help mental sharpness. Since a percent of PD patients get dementia, and it is a healthy oil anyway, why not keep at it?
So, even to this day I still take 4 T in my morning oatmeal. It is hard to say how well it is helping, since I may not be experiencing the same mental awareness if I weren't on it, but there is no way to know that other than to get off it.
After two weeks of being off Sinemet, the symptoms, noticeably worse than they were before I took it, were getting difficult to deal with, especially while chanting at church. So on 9/24/13, I started taking it again, at least until the neurologist said to do something different.
But that wasn't the end of my testing things out. Even now, I'm trying something new. But I'm out of time and this is long enough for one post. So I'll have to continue my story later Until then.
So naturally when I returned home, I hopped on the internet and started researching both Parkinson's, Essential Tremors, as well as Multiple Sclerosis. I quickly ruled out MS. But for a period of time I thought I might have ET instead of PD. But I began to realize the PD symptoms fit what I was experiencing more so than ET.
As mentioned before, I went a few months before deciding to take the Sinemet (a combination of Levadopa and Carbadopa that stimulates dopamine production in the brain to replace what is missing) to see whether or not it helped my symptoms.
With PD, also both ET and MS, the medical establishment doesn't know why people get it, except in a small percentage of cases (genetic and exposure to certain chemicals), nor is there a cure for it. It is a progressive disease. Currently, all doctors can do is treat the symptoms. There is one potential drug in the final stage of testing that has the potential to slow or halt PD progressing in some people. That is a few years down the road, however, and won't work on everyone. Right now, all doctors can do is prescribe medicine to manage the symptoms. The progression of the disease goes on, unchecked. Some even say the typical PD medications end up accelerating PD progression. Also medically, levadopa drugs like Sinemet tend to bring on dyskinesia with long-term use, which can be just as debilitating as PD itself. Michal J. Fox is a good example of someone with dyskinesia.
While other diseases can be more life-threatening, many of them can also be cured and the person eventually return to a normal life. Whereas with PD, the common saying is you don't tend to die from PD, but you die with it.
But when it comes to trying different things and "drugs" it also has its benefits. Trying out other things, as long as they are safe to do so, isn't going to speed up or slow down PD itself. Even deciding to take nothing isn't going to speed up the march to ending up in a wheelchair should one live that long.
I started taking the Sinemet in August of 2013. I took only that for about two weeks. During that time, it did seem my symptoms lessened, but I didn't get the "all back to normal" experience that some do with the drug. I heard about a potential alternative treatment: coconut oil. The lady who promotes this had a husband with Alzheimer's. He was getting worse. She learned about coconut oil's medium-chain triglycerides that can pass through the brain barrier (a barrier that filters out bad stuff from getting into the brain area) and provide energy lacking in those patients from the inability of the brain to produce its own energy from glucose. At least, that's the theory. It has yet to be tested in clinical trials, primarily because there is no profit potential for drug companies to do so, and no donations have been given.
What I've learned is that there is an abundance of theories of what causes PD and how to fix it. So one has to be careful, especially if they are selling something. But when it made sense to give something a try, why not as long as it is safe to eat/take?
So I didn't buy the lady's book, but our grocery store carried a decently priced jar of organic, cold-pressed, pure coconut oil. Most of them are expensive, but while still not cheap, we found a large jar for around $10. The LuAnn version didn't have the quality needed to assure it would have the MCT needed.
I started taking 4 tablespoons in my morning oatmeal. The lady recommended 8. Tried to figure out what else to put it in. Tried my fruit smoothie, but I didn't like it. Oatmeal seemed to be the only thing I could put it in and eat it. And 8 T was too much for one bowl. Plus, while I'd heard about all the health benefits of coconut oil, I didn't want to overdo it and end up with a heart attack trying to fix PD.
So I stuck with 4 T a day. If I noticed any significant improvement, I'd up it to 8, somehow. So for another two weeks, I took coconut oil everyday except Sundays and a few Saturdays. During that time, I did seem to improve, but I had no idea whether it was the coconut oil, or the cumulative effects of the Sinemet.
To find out which one was the help and to find out if a worsening of symptoms might confirm the Sinemet was helping, I decided to stop taking the drug. By the end of one week being off of Sinemet, but still taking coconut oil, my symptoms got noticeably worse. It verified two things. One, the coconut oil wasn't doing anything for my PD symptoms; it was all Sinemet. Two, it confirmed that the Sinemet was helping for sure. Another confirmation that what I had was PD.
So I wasn't surprised when my nuerologist confirmed I had PD. I would have been surprised if she'd said anything different at that point. That said, while the coconut oil didn't seem to help my symptoms, it was still possible that it did help mental sharpness. Since a percent of PD patients get dementia, and it is a healthy oil anyway, why not keep at it?
So, even to this day I still take 4 T in my morning oatmeal. It is hard to say how well it is helping, since I may not be experiencing the same mental awareness if I weren't on it, but there is no way to know that other than to get off it.
After two weeks of being off Sinemet, the symptoms, noticeably worse than they were before I took it, were getting difficult to deal with, especially while chanting at church. So on 9/24/13, I started taking it again, at least until the neurologist said to do something different.
But that wasn't the end of my testing things out. Even now, I'm trying something new. But I'm out of time and this is long enough for one post. So I'll have to continue my story later Until then.
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