Parkinson's disease is treated in several ways. And treatment is what is currently available; there are no sure-fire cures. Sadly, treatments often lose their effectiveness to combat both the symptoms and the progression of the disease as the years pass.
To confound the problem of treatment is the fact that Parkinson's disease is a collection of syndromes with varied symptoms and progression rates. Treatment needs to be adjusted to the individual.
Knowledgeable physicians and proactive PD patients learn to be aware of when adjustments in dosage, timing, the addition of another medication to work with the current prescribed med can be effective in prolonging "on" times and reducing "off" times. And some are aware that nutritional supplements are as much a part of a therapeutic regimen as the prescription pad. Other physical therapies are acknowledged by advanced medical plans so that all you need is a prescription for a sessions which the patient can often continue.
So what are the options? Let's begin with a summary of prescribed medications by category. We'd love to post the handy-dandy medication chart we made listing product names, generic names, symptoms for use, contraindications, side effects and some general information about the way the medication works but, doggone it, we've been unable to transfer the table successfully to the blog-site. We're working on it. Today we're working from the printed version.
Prescription Medication:
DOPAMINERGICS are the most common - these have been the "gold standard" for many years but are not without problems and may not be the best choice for the newly diagnosed.
The standard treatment has been Sinemet (levodopa-carbidopa) This is still the first line treatment for the majority of patients but is losing some ground to Azilect
Levodopa is absorbed into the blood stream in the small intestine and converted into dopamine after in crosses the blood brain barrier. (note: dopamine cannot cross the blood brain barrier)
Problem: Levodopa has a short half-life and a major side effect is nausea which can last up to a year. A number of other problems can occur including hallucinations common to other PD meds.
The combination of levodopa-carbidopa improves the functioning of the levodopa, prolongs the "wearing off" meaning fewer side effects such as the dyskinesia-dystonia. It can also allow for a lower levodopa dosage.
Other dopaminergics include Madopar which is levodopa-benserazide hcl.
Carbidopa is also a dopaminergic - it inhibits the peripheral metabolism of levodopa prior to crossing the BBB.
For people who have trouble swallowing there is Parcopa (levodopa-carbidopa) which is orally dissolvable.
The most common immediate unpleasant side effect of dopaminergics is nausea which can last for up to a year but may be relieved by increasing the carbidopa. Timing is important and taking with a low-protein meal may reduce nausea. It is suggested that a regular protein meal follow Sinemet by at least one hour.
DOPAMINE AGONISTS - bind to different dopamine receptors - they are sometimes taken with antagonists because they have a short half life. The binding activates the dopamine receptor pathways.
I'm not going to list all but the most common include bromocriptine, Requip XL (ropinirole), Mirapex, Trivastal, and the
Neupro Transdermal patch (rotigotine) returned to the European market last June and is anticipated to return to the US market in July 2012 - although it is not entirely unavailable to US prescription holders.
DOPAMINE ANTAGONISTS are primarily used as anti-psychotics. They bind but they don't stimulate dopamine receptors - they copy the effect of DA.
COMT INHIBITORS - inhibit the catechol-menthyltransferase enzyme to inhibit the break-down of dopamine after its release in the brain. They begin to work immediately after the first dose. They are often combined with levodopa-carbidopa later in treatment. Common names include Comtan (entacapone) Tasmar (tolcapone and Stalevo (which is a combination of levodopa-carbidopa-entacapone)
MAOI-Bs are another category - Monoamine oxidase-B inhibitors or MAO-B inhibitors slow the breakdown of dopamine by inhibiting MAO-B enzyme. By this action, the dosage of levodopa-carbidopa may also be reduced.
Common MAOI-Bs include Selegiline or Eldepryl, Zelpar. These still carry the tyramine-cheese effect warning which is actually more common to MAO-As. There is also EMSAM which is a transdermal patch of Selegiline which is also approved by the FDA for treatment of Major Depressive Disorder. The 6 mg EMSAM patch does not carry a tyramine warning..
Another MAO-B which differs chemically from Selegiline is Azilect. Many people are turning to Azilect as a first line medication - before any other anti-parkinson's meds because it has shown to be very effective in slowing the progression of this disease. Currently there are trials to determine its effectiveness in being later combined with levodopa-carbidopa to reduce the "Off" times and to prolong the effective usage of levodopa/carbidopa. On December 14, 2009 FDA approved the removal of the tyramine warning from the Azilect label.
OTHER MEDS include off-label meds which have been effective for some people.
They include: Amantadine, an anti-viral which increases the release of dopamine.
DynaCirc CR - a calcium channel blocker or calcium agonist - which tries to restore the cells to a more youthful saline condition.
Note: it is thought that dopamine is forced into the cytoplasm prematurely and there it combines with misfolded alpha synuclein and calcium to create the gummy mess which
causes the dopamine to die.
The Exelon patch - a reversible chlorinesterase inhibitor used for moderate dementia, cognitive skills loss and executive skills.
Aricept functions in a similar way but is still more common to Alzheimer's patients.
In the next category are the ANTICHLORINERGICS which block acetylcholine to compensate for that loss of homeostasis with the declining dopamine neurons. They are not as commonly used now but are the oldest of the modern PD meds.
A few names are Artane, Cogentin, Norflex, Benadryl.
I'm not going to list the ANTI-DEPRESSANTS and the various categories such as SSRIs but that is another category of PD meds and yes, we have another fussy table that won't transfer properly. But we will post it one day because it is helpful.
Okay, what's next? Many people would love to be able to use NUTRITIONAL SUPPLEMENTS or alternatives to conventional medication and there are a number of important supplements, but make no mistake, they too have side effects and can have an impact upon brain/body homeostasis - often the reason for use - unless contraindicated or mis-used.
Most of these nutritional supplements can be
found in foods but to get the right amounts to fight free radicals we supplement. To get the optimal amounts of some nutritional supplements, we take capsules and tablets, powders and liquids. Often we could not possibly eat enough of a particular food and/or those food may also include other elements which in larger amounts might not be so beneficial. Remember also that for PwPs smaller capsules seem to work best unless you can find a chewable or better yet a sublingual that doesn't result in a burning sensation.
In this category are
Antioxidants such as
CoQ10. Another very important antioxidant for PD is glutathione in either sublingual, liquid or the expensive IV treatment. We'll be writing more on glutathione and N-Acetyl L-Cysteine. Vitamins C and E are antioxidants which work synergistically, even more so with the addition of Alpha Lipoic Acid. Vitamin A is well stored in the body but an occasional boost might not hurt either as beta carotene or as Vitamin A.
PwPs have deficiencies of certain B vitamins. A low dose of B complex (25-50 mgs max) might be in order. Otherwise B2, B5, B6 and B12 can be adjusted separately.
D3 will help to boost the immune system and for PD patients who don't get out into the sunlight much - there is no other alternative to producing Vitamin D in the body. Other supplements to consider are: Acetyl L-Carnitine which is sometimes found in combination with Alpha Lipoic Acid.
Creatine is not just for weightlifters and body builders, PwPs are taking it also. Not just any creatine, however but micronized creatine monohydrate which is available as a pharmaceutical grade product. Creatine is also a powerful antioxidant for scavenging ROS.
You don't hear much discussion about mushroom extracts for PD immune system enhancers but Maitake, Reishi, Shitake and Astragalus can sometimes be found in a combination capsule (to keep the cost down).
For folks with digestive issues, consider ginger or Lactobaculis Acidophilus for a healthier GI tract balance. This is very important when diarrhea is an issue or after a course of antibiotics which also does a number on the friendly flora in the gut.
Omega 3 oil is another nutritional supplement. Another interesting source of essential fatty acids (EFAs) for PD is Coconut Oil, a medium chain triglyceride. It has an unique combination of fatty acids and does come in capsule form if you don't find one with a decent taste for food preparation.
If you're not drinking green tea, there's a capsule for that and might actually be better for providing what you need without what you do't need. And if you don't cook with a good turmeric from India, it also comes in pills as well. The primary ingredient of turmeric is a powerful anti-inflammatory in the form of curcuminoids. Recent research (2012) indicates that the curcuminoids in turmeric are effective in preventing the clumping of alpha synuclein proteins. Moreover, it may do this by speeding up the folding and reconfiguration of alpha synuclein.
We don't have any experience with mucuna pruriens. You can obtain mucuna pruriens as velvet or fava beans. It is also available in as seeds, powder, capsule or extract. The problem is finding the "dose" that works for you since much of it will be lost in the digestive process. Standardized doses may work more effectively and be safer. You can find it online as Dopabean from at least one company. Be wary of claims about the L-dopa content because many companies products are not standardized, making it very difficult to determine how much you need and to risk getting too much or too little.
9/2011 Addendum: Steve has some experience with mucuna pruriens now and we will be writing about it when he has used it for a longer period of time and we know more about the assistive benefits of EGCg found in green tea..
HEALTHY DIET for PD:includes items listed above as well as below.
You're going to have to make the adjustments to your medication schedule and the type and restrictions of those meds. For nutritional suggestions, some diets like the Mediterranean diet may be a bit healthier and use some very helpful seasonings. The focus here is on olive oil which actually enables utilization of nutrients from fruits and veggetables, fish rather than too much red meat, and red wine (in moderation).
Is invaluable on a regular basis. This is more than our opinion it has been clinically demonstrated. If you have the $$$$ and can afford it, 2 sessions a week would be ideal. One session would be good and less than that will see many reversals of the good done. Medical massage -
Swedish Massage involves the entire body with focus on the problem areas and issues and really should be done by the same licensed therapist all of the time. Massage increases endorphin levels, works to break up muscle knots, reduces stiffness and alleviates pain caused by a variety of conditions. An important element in
treating postural instability, massage should be on your therapy wish list. Unfortunately this valuable therapy is not recognized by most health insurers including Medicare. Other forms of useful massage include Shiatsu/acupressure, and Neutomuscular Therapy (NMT). Massage therapy can also be beneficial as behavioral therpay when treating anxiety and depression found in PwPs...and their caregivers.
PHYSICAL THERAPY
Occupational therapy for assistance with tasks of daily living. Getting into bed, standing and sitting, buttoning a shirt, whatever. While this is not permanent on-going therapy, a patient will need refresher courses as the disease progresses. Care-givers should attend these sessions if permitted.
Exercise therapy can include a wide variety of therapies: swim, dance, yoga, tai chi, nautilus equipment, exercise bikes - especially motorized bikes for legs and arms, vocal exercises.
Forced Exercise: is a more recent concept but very exciting. If it you find access to the right equipment and can put in the required time, it might work for to reduce reliance on higher dosages of medication and to relieve some symptoms.
Voice therapy will include the very important breathing exercises to aid speaking,
breathing, swallowing. If you can't get to a therapist, there are home exercises which will help.
OTHER TREATMENTS
As the disease progresses there is also
Deep Brain Stimulation if the patient meets the qualifications and the physicians feel they are good candidates.
There are older surgical procedures but are not as commonly used in this century. More treatments and surgeries are in the pipeline. However, it was announced in October, 2010 that these older surgieries are still valid and moreover can be used with DBS with the understanding that there is a higher risk of depression with subthalmic nuclei surgeries.
While we are not convinced that any form of
stem cell treatment performed now will have more than limited advantage, who wouldn't want to have that advantage for a few years? If successful, there appear to be reversals after a few years. The various forms of cell therapy are still works in progress and are still pipeline treatments.
Although not treatments, tools that can help the PD patient with activities of daily living are part of the therapy to assist unaided or semi-aided functioning. Special handled flatware, laser canes, shirts with snaps, cups that prevent spillage, walkers with baskets and seats,
voice recognition programs and other
computer programs to enable "typing", bath seats, higher toilet seats will be of use to many PwPs.
One last observation: a plan is needed that involves the dreaded "what if" stuff. How and who and when, where and why. Quite a bit of planning may be necessary for a disease which can render a person almost completely non-functional. Families need to discuss these matters with the patient in the beginning. Plans must be made to make the home safe for the PwP so that they can remain there as long as possible.
And plans must be made to relieve caregivers from time to time. I'd suggest weekly to be realistic to their needs. Several hours are necessary so that they can catch up with social activities, do shopping, spend some uninterrupted time with reading or email or just get a well deserved rest to make up for their own sleep deprivation.
Think what a wonderful Holiday Present some free time would be to someone who needs recharged batteries.
my mom has PD and your blog is invaluable and full of good information, thank you so much, from Lima, Peru...
ReplyDeletewhat do you think about the Theracycle? I would love to give it to my dad who has PD, but it's over $5000. What is it exactly that makes Theracycle better than using ANY recumbent bicycle (can't i just buy him a recumbent bike?)?
ReplyDeletethanks!
I know what you mean; I too wish we could afford a Theracycle.
ReplyDeleteThe reason for the Theracycle or one of the Rech motorized exercise bicycles is that they will:
1) Get up to the optimum speeds
2) Assist the weaker side in pedaling when the body is willing but unable to do so
3) Assist the entire body in maintaining the optimum speed
4) Recumbents will assist but they will only pedal to the highest speed you can maintain - that is usually NOT around 90 mph.
5) The Rech MotoMed bikes may be a bit more adaptable to space and individual needs. Some models are also intended for chair and wheelchair usage.
To check the prices on the Rech there is a link provided to Rech MotoMed at the bottom of the October 19, 2009 post: Parkinson's Disease News Updates in Brief:
http:parkinsonsfocustoday.blogspot.com/2009/10/parkinsons-disease-news-updates-in.html
You can just click on the Theracycle ad on this page to compare.
You are looking for the motorized bike and not the more common magnetic flywheel bike. There is a significant difference between an exercise bike and a therapy bike. And of course since there is less demand for the therapy bicycle, the cost is more than proportionately higher.
Of course, if you are looking for inexpensive home exercise and not Forced Exercise, those small Sunny motorized bikes will get between 60 and 64 mph and can be used on the floor for legs or on the table for arms. They run about $120.00 and up on eBay or online. They will provide assistance with strength and range of motion and relief from stiffness to some extent.
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ReplyDeletemy husband has Parkinson's disease but does not have tremors but shuffles his feet and has balance problems. He is still pretty active. He takes carbidopa/levodopa 25-100mg. x 3 a day.
ReplyDeleteHe also takes REQUIP XL 2mg. x 3 a day. His doctor has changed it to 6 mg.once a day. This is very expensive and is not generic. His insurance company will no longer pay for in in 2011. I am hoping she will prescribe alternative drug ROPINIROLE HCL which is generic and cost 7.00 for a months supply instead of 224.82 a month for REQUIP.
Often doctors don't realize that a particular medication is not covered under a health insurance plan unless you tell them.
ReplyDeleteIt is so important for patients and/or their caregivers to be proactive in their medical care.
By all means, call your husband's doctor and explain just what you have told us. Ask for the generic. True some generics may not be absolutely identical but it should work well for him at a cost you can afford.
Why did his insurance company decide not to cover this medication? Too many people with RLS and PD taking it? Do they cover the generic?