What has prompted me to write this? Well again I had to tell someone while out shopping that I have Parkinson’s Disease, which we usually refer to as PD. This isn’t something I go around saying, like hey look at me, I fall and can’t get up easily, or announce to the world to LOOK at ME!
The problem was I had trouble grabbing my credit card out of my wallet and ended up dropping the wallet contents on the conveyor belt. This was only part of the problem as I struggled to get the cards back in the wallet, I could feel the sighs and eyes glaring at me as I tied up the grocery check out line. This angst of being too slow, getting in the way, worrying about making that venerable ass out of myself yet again, came over me as I rushed to get things together again and only made things worse.
It was an issue very similar to the above which prompted me to join a book committee on Parkinson’s Disease. I was a member of BrainTalk forums and a post was made among the PD forum/community about the idea of a book. This coincided with a work-related issue which can be a subject of another related diary some day.
Thus was born The Parkinson’s Creative Collective parkinsonscreativecollective.org
and the ensuing book. The Peripatetic Pursuit of Parkinson Disease.
When most people hear Parkinson’s Disease, or Parkinson Disease, the first thing they think of is old people shuffling about and shaking. Parkinson’s Disease does not always just affect the elderly. In fact as time has shown, there are more and more younger people affected by the disease. These people are broken down into categories with Young Onset being under 45, and Early Onset being 45-60. I was diagnosed with Early Onset because I was about 45 when I started having the symptoms.
The disease is also one of those so-called boutique conditions because not everyone has all the symptoms at once, nor are they the same for everyone. This makes treating the condition difficult because what works for some most of the time, may not work for another.
Idiopathic Parkinson’s is the one that most people think about. This is the classic, as all the symptoms mentioned below, and these folks follow a common path of treatments. Not all of us are that ‘lucky’, and end up with a basketful of symptoms, and some of the classic signs. These are sometimes called parkinsonism, rather than Parkinson’s Disease, because not all the symptoms are present, but in most cases parkinsonism is PD, and responses to the treatments just the same.
The problem too is the symptoms are not always noticeable unless the person is “off” and the symptoms return. But the more important issue is the stereotype. Parkinson’s is not all about having a tremor. The tremor is only one of the many symptoms, which are classed into categories called motor symptoms .
There are four cardinal signs of PD, of which I have three of them all the time and tremor is not among them most of the time:
- Tremor
- Slow movement (Bradykinesia)
- Postural Instability
- Muscle rigidity
I have all but the tremor most of the time. Yes, there are those of us with PD that do not have that famous tremor, or have it only in times of high stress, fatigue, and just because, but usually when very fatigued it becomes more apparent. I so happen to have what we refer to as an internal tremor. We vibrate internally as though we’ve held an electric tool like a drill and still feel the vibrations.
So what is the “disease”?
Parkinson’s Disease is caused by a lack of the neurotransmitter Dopamine, and is caused by either the area in the brain where the Dopamine is manufactured — the Substantia Nigra, or the receptors not taking up the Dopamine properly. This relationship was discovered during the 1960s and is portrayed in the movie “Awakenings”.
With reduced Dopamine, it was found that people stiffened up, fell or shuffled about, and this became more apparent in Heroin addicts who injected the chemical MMTP. This caused the symptoms of PD, which lead to rat experiments and finally, a manmade substitute called L-Dopa was developed, which was found to be successful. The problem is the medication has awful side-effects, which were mitigated by introducing an other medication called Carbidopa. Carbidopa used to be taken separately, and is still available in that form, however, it’s been combined into a single dose with L-Dopa called Sinemet.
What causes this condition? They’re not sure really. There are ideas and there are many possible causes:
- Exposure to heavy metals such as Manganese, which is used in welding;
- Exposure to pesticides such as Chlordane and DDT. There seems to be a correlation between living and growing up in rural areas and well water;
- Viruses
- Genetic links
- Other medications such as statins
- Head injuries caused by boxing and other causes;
- Lots of small strokes.
Anyway, before we get into the meds, let’s get back to the symptoms and the baggage behind this.
As I said this neuromuscular condition has other components to it which make up the package so to speak. With the slow movements, and muscle rigidity come falls, and are something I am very familiar with.
Besides the motor symptoms mentioned above, we have what are classified as non-motor symptoms, which can be worse than the tremors and stiffness.
- Digestive issues
- Bowel problems with constipation being number one on the charts
- Bladder issues
- Vertigo and balance
- Decreased sense of smell
- Fatigue
- Depression
- Reduced arm swing and limb movement while walking
- Cramped handwriting, or scraggly uncontrolled scribbly handwriting
- Reduced autonomic responses such as sweating or sometimes excessive sweating
- Orthostatic Hypotension
- Hypotension in general — my BP is around 90/60 resting
- Increased Salivation
- A lack of normal responses such as blinking, or reduced blinking
- Lack of facial expression
- Hallucinations
- Vivid Dreams
- Restless legs
- REM sleep disorders such as acting out dreams
- Soft voice
- Slow thinking
- Muscle cramps (Dystonia)
- In ability to organize and stay focused
- Executive function issues
- And, many, many more things not mentioned.
These issues may seem to be annoying one by one, but if you combine them into a “package” they can be a bit much. As a PwPDer (A person with PD), we don’t always have all these symptoms at once, some come and go, and some remain longer than others, but we do get a bunch at once. For many years neurologists didn’t count these as important and focused only on the motor symptoms. This approach has changed as more understanding of the disease mechanics has taken place over the nearly 200 years since Dr. Parkinson named the shaking palsy it was called at the time.
Back to the medication.
I mentioned the gold standard above — Sinemet.
Sinemet is the combination of L-Dopa and an adjunct medication called Carbidopa to help assist the absorption into the bloodstream. The problem is L-Dopa taken by its self is rejected by the body and the person vomits violently once it enters the bloodstream. Since there is no intake of the medication as it gets sent off and there’s very little benefit (if at all from the raw form). The Carbidopa, also known as Lodosyn if taken separately, assists in the breakdown and absorption by the blood brain barrier so the patient gets the benefit of the medication.
The medication works well and I will say that my very first dose was amazing as it nearly eliminated the stiffness and rigidity for me within 20 minutes of the first dose. It was as though I came out of a shell and could move around for the first time in nearly four years if not longer. For the neurologist, this response is something that serves as a marker that this is what the symptoms are showing.
Like many neurological disorders, there is a lot of crossover of symptoms as they affect the pyramidal and non-pyramidal parts of the nervous system. MS, ALS, the Parkinson’s-Plus diseases, and many others share these symptoms, and a response to Sinemet, other than vomiting without other positive results, usually is a good sign, though there’s a catch… some of the PD-Plus diseases will respond at least initially to the medications so it’s not always a win here, but it does rule out MS and ALS.
What’s that Parkinson’s-Plus stuff?
This is a handful of disease which include:
- Multiple System Atrophy
- Dementia with Lewy Bodies (DLB)
- Progressive Supranuclear Palsy
- Corticobasal Degeneration
This small handful of diseases have some of the components of Parkinson’s Disease, however, their response to the medication is usually short lived, if at all, and the disease conditions progress rapidly.
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Anyhow… This is the standard by which all other medications are based on, and it serves as a base upon which others are used in adjunct with.
Like all medications they come with a cost outside the monetary one:
- Nausea and Vomiting (one of mine)
- Vivid dreams — in addition to them being caused by the disease
- Severe constipation — to add insult to injury
- Uncontrolled movements called dyskinesia
- Increased susceptibility to melanoma and glaucoma
- Drowsiness and sudden sleep.
In addition to Sinemet, when increased doses and schedule changes don’t work anymore, there are other medications available which were not there in the 1970s.
Dopamine Agonists such as Mirapex or Requip
These fake the Dopamine receptors fake out the brain into thinking that it’s getting more Dopamine than it is by making the receptors more sensitive, and as a result they work harder and that helps with the symptoms.
These agonists, however, have some really bad side-effects of which some are listed below.
In addition to those above, there are problems with:
- Compulsive gambling
- Hyper-sexuality
- Other compulsive disorders
- Narcolepsy
The problem is, as complex as this really is, really simple. Dopamine is used for multiple things in the body. It’s used for the muscle to brain communication, thus, the motor symptoms, as well as for the pleasure center of the brain, and as a counter balance for the other transmitters Acetylcholine and Serotonin. The increased levels of Dopamine then cause the pleasure center to go into hyper-overdrive and the results are nasty. Families have lost their homes and life’s savings accounts due to the compulsive spending and gambling as a result of these medications. The Hyper-sexuality, as we know, could very well be devastating to families as well, and very much so for a spouse.
On instance, which is now quite famous and has resulted in a lawsuit against the company that make Mirapex, a married man in the UK with PD started dating and pursuing other men! The family ended up with quite a settlement, and once the man stopped taking Mirapex, he went back to his married life.
MAO/B inhibitors such as Azilect and Selegiline
MAO/B is an amino acid which breaks down the Dopamine. People with PD need to keep as much Dopamine around to get as much out of the neurotransmitter they can. These drugs do work well, I’ve taken both Azilect and Selegiline, with the former being the new drug on the block, but very expensive, while the later being older and works similarly but requires an odd dosing schedule.
Like all the medications so far they have the vomiting, et. al. side-effects, however, it’s worth mentioning that there’s also an issue with tyramine interactions which can be fatal in some people. This means dietary restrictions such as reduce or eliminate all the good-tasting things such as pickled herring, Lox, dark chocolate, red wine, hard cheeses, and various cured meats.
COM-T Inhibitors — Catechol O-methyltransferase inhibitors such as Comtan.
Comtan helps keep the Dopamine in the system longer so the receptors aren’t shutdown too soon. Without going into the technical side of things, it’s like keeping the tow truck from going around and picking up the cars before the meter has run out. The COM’s job is to pick up any leftover Dopamine and throw it away, which for a PwPDer this isn’t something we want to happen!
The side-effects again are similar to all mentioned above along with the vomiting and include some mental issues, which are made worse when given to the elderly.
There are other medications which are used as well including Amantadine, which helps with the tremors and stiffness some as well as the fatigue. This was once used as an antiviral medication and has found new uses for Parkinson’s Disease. There are some side-effects, such as vivid dreams, nausea, and for some people red-blotches on their skin.
And finally the Carbadopa, which I mentioned early on. The trade name is Lodosyn and it’s used as an adjunct to help the Sinemet work better. I have taken this for quite some time and it is successful.
As we can see the goal here for all these medications is to keep the Dopamine, as much as possible, in the body as long as possible.
So what was that Off-thing that was mentioned?
Us PwPDers can’t manufacture Dopamine like normal people do. The problem then is the medication runs out and has to be replenished. As my neurologist, a Movement Disorder Specialist explained this I thought of a tank holding Dopamine that’s been manufactured naturally and doled out as needed. In our case the tank gets emptied when the medication runs out and this causes the return of symptoms, and in some cases a severe and sudden return of symptoms. This can cause people to freeze in place as they walk causing falls and injury.
Speaking of the freezing. People with Parkinson’s Disease will sometimes freeze when going from one floor surface to another. This is caused, as explained to me by a physical therapist, by the muscles and brain being slow to react to the change in surface. You see as dumb and clumsy as our feet may seem, they’re pretty adept at changes underneath them. They have this ability to micro-adjust their surface to adapt to the changes from rough to smooth surfaces. Since this is a neuro-muscle response, the signal to change is a bit slow getting to the feet. The result is the feet are still flat and stiff instead of soft and relaxed to take up a soft surface. The end result is freezing and falling as our brain and muscles is trying to figure out what’s going on. It was this kind if thing which was part of the reason I stopped working. I was constantly going from offices to lobby, and all over the buildings I as in. The offices are carpeted while the lobby had a granite and slate floor. This going from soft to hard caused me to fall more than once, and I became a liability.
Currently I am no longer taking Sinemet on a daily basis. It’s not that things have improved, sadly they have gotten worse. The medication now causes more than just vivid dreams. I have seen aliens and had alien abductions, usually see bugs crawling on my walls, or see and hear other critters in the dark. I’ve also had some major war-like fights and found myself crawling on my belly one night as I woke up during a fire fight. I’ve also punched myself in the eye. That was rather interesting trying to explain this to my manager the next day at work when I was working at the time.
When I mentioned this to my doctor a few months ago, she said it’s time we take another course of action and see what else can be done. During my last trip, I talked with a nurse I was traveling with back in July. We were talking about stuff and she had noticed my odd gait and said to me you have a neurological problem. It turns out she actually worked in a neurology care unit at a hospital in Bristol England. We discussed what was going on in details, and she said I had reached the end of my honeymoon period. Thinking about what she said, makes sense. I had been taking Sinemet mostly since late 2005 at least. This is an 11 year period, which is longer than most people do before the dyskinesia and other bigger side-effects start kicking in. I’ve never had dyskinesia even with the really high doses of medication I was taking at one point.
During this time, up until recently I had no side-effects other than a bit of indigestion when I took the medication. Perhaps I was lucky I got the time I did. At this point I’m not giving up hope. I continue to do what I can while I can within limits. This means still playing the piano, still going out for walks, hanging on the website here and getting myself in trouble. (sigh), but anyway there’s no reason to stop living, and there’s no reason ever to seek sympathy. We’re dealt a stack of cards call life and this is what we deal with; both the good and the bad.
I’ve decided a long time ago, the only thing that hasn’t been taken away from me yet is my sense of humor, and try to remain as stress free as possible. Yes, stress is a big instigator in symptoms.
What I hope is that this gives you all an insight into my soul and what goes on in my head. When redwingers and their scary ideas that us folks with disabilities will lose our benefits, I truly get upset. Oh, I really want this in my life. It’s not fun folks and I wouldn’t wish this on anyone.
Politics never upset me before like it did this year. Seriously. The PD must be working overtime because I’ve become more symptomatic as we’re getting closer to the election. Let’s all GOTV and clean up the House and Senate as well as take the Whitehouse with Hillary.
For further reading and resources:
www.apdaparkinson.org
www.michaeljfox.org
www.patientslikeme.com