Treatments for Parkinson's Disease

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). 

don't forget the green and black tea or a few black walnuts a day.

MASSAGE THERAPY

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.

Can We Talk about Sexuality and Parkinson's Disease?

Let's We Talk about Sexual Needs & How to Fulfill Them When One Has a Neuromotor Disease

Can we talk?
About sex and
anger, and sexuality and
sensuality, forgiveness, compromise, pragmatism and reality
and about trust and caring.

It's not easy to forget or ignore that cruel twist of fate, genetics, injury or environmental toxin exposure and we are angry, hurt, scared, confused, dejected for good reason. Some people suffer from PD and some people acknowledge its presence and move on. Wherever we are, either as one who has or one who cares, some of the package instructions may have changed.

We're trying or wanting to maintain an intimate relationship with our partners while life feels as if it has turned upside down. In a way it has. The changes justify those feelings but there is an opportunity to begin again. Perhaps to learn from past mistakes.

The changes are caused by medications, by physical changes and limitations, by the psychological changes caused depression, anger or fear. The anxiety caused by feeling that you can no longer be a sexual person but a PD patient or a caregiver. How do you get past these issues?

Identify the problems. What is different? Whether the issues are the inability to gain or maintain an erection, vaginal dryness, the inability to reach an orgasm, to ejaculate, they need to be faced. Can you roll over in bed, get on your knees? Those things make a difference in what you do now. If you can't find a way through these changes, you need to find a way around. Is there a diminished interest in sex or an increased focus? What do you need to feel That Way now? These aren't insurmountable issues but they may require a bit of finesse and creativity.

Everyone wants to see that SEX word but that isn't all I'm going to talk about. Even if you don't have a sexual partner we can still discuss this. Because this series is about the natural sensuality that is in all of us no matter how hidden.

What turns you on? We've gotten older, some of us, and perhaps that beautiful young exciting body has given in to signs of aging. Okay, life happens and no one can repeal the law of gravity - not without some very $$$$$ plastic surgery. I know that I look better in clothes now as opposed to that time when... Personally, I like to see my husband dressed in jeans and a decent shirt the way I always did. That's a turn on to me. What's your visual turn on?

I loved the low tones in his voice when he was younger. They mellowed with age and then they slowly disappeared with the onset of PD. We were lucky that the combination of meds, supplements and voice exercises restored some vocal flexibility. Because I still like to hear him.

Physical flexibility and strength. Mine are just fine, his is fading. Since he was never that flexible, it was his strength that lit my fire. So find something else. Don't dwell on what was unless you can recreate it. While he is working to regain some strength, muscle strength exercises will have to be a constant as PD can take away almost as fast as you regain it. We didn't do that much of the Kama Sutra when we were younger because sometimes it takes planning and he liked his spontaneity. Talked about it sometimes but...

While for alphas finding the direction might work in a more robust way such as laughing at a joke or something lustier, this can also be a time to find less aggressive direction. Candles, music and incense might not have been the way once, perhaps they can be now. It doesn't matter if you can't hear the music, can your partner?

Oddly enough, sometimes as sexual partners, it can be the little things that warm us. Complementing the cook. A casual touch on the face, neck or shoulders without any demands - just a sign of appreciation and affection. Holding hands. Just sitting quietly together. A smile. Trust.

Trust is tricky because if one of you can't trust your own body...but that's a stop on the way we're going. Trusting your body and your partner's. Trusting each other enough to confide your likes, needs, your fears. To be listened to and to be heard. To move your partner's hand to the right place because you feel that your partner will care enough to remember. This is a whole new level of trust.

Let's face it, some people were never that interested in sex because they weren't. While other people were always uncomfortable talking about what they liked. Sometimes they didn't know. Some people never had the great lovers who taught them about themselves and who knew all of the techniques. Others were just not raised to be able to talk about their sexuality.

I can't speak for men on this one but some women never masturbated to teach themselves about what really felt good to them. So how are they ever going to tell their partners who don't know either? Embarrassment can be two-way. One can't ask and the other can't tell. So no one knows. That needs to stop now. And that can feel uncomfortable.

So make your own list. What turns you on? What can you do? What isn't possible any longer? How would you like to be seen and see your partner? What are the psychological and physical impediments? What is realistic and what isn't. Share your lists if you're not comfortable talking yet...that trust or embarrassment thing, you know. You may not be able to meet in the middle. Wherever you meet, it isn't a place for anger. And don't force each other to lie. If you need to write about anger, that's fine; but don't put it in this list.

As a partner, you may be capable of doing exactly what you always did but as part of a couple, that isn't possible. As a caregiver your mindset has probably undergone some changes so take that into consideration because you are also living with this condition and identify with it even if it isn't your body.

When it's time for one of you to open the discussion, don't start by saying, Houston we have a problem. Begin with I Love You. I miss holding you, I miss touching you and being caressed. I want you in my arms. What do you want, what do you need?

We'll pick this up again in a few days.

For Better Or Worse with Parkinson's Disease

So we all know that Steve has PD

A couple of weeks ago I asked Steve if I could write an entry for this blog because I thought it might be helpful to share his progress from the other side of the room. I'm glad I waited because there has been a change very recently which has been a big boost to my morale.

One of the problems with being the spouse of a PD patient is that your role changes subtly at first to worried carer, then to watcher of symptoms, you develop your research skills in areas you never studied in school. You become an exercise nag, the assumer of household tasks, the valet, then the voice on the phone, you become under-protective and overprotective. Since Steve is only in early stage 2, I don't know as much about the next roles from first hand experience.

These are not play roles, they are quite real. All the while you know that it is the essence of that person which you love and swore to stay by in sickness and in health. And here it is...and sometimes you are not quite sure who you are because your needs have to change as that disease progresses.

Sitting at the computer, everything about him looks normal, as normal as say 15 years ago. The glasses are a bit different as Steve began wearing prism glasses for desk-work only almost two years ago.

So where are the changes?

I take out the garbage now. It was always his chore...which he has hated from the time we were married. When I returned from Florida I realized that he was getting garbage out of the house but not out to the curb. So it became my chore.

His reasons are different now. The loss of strength now prevents him from hauling the bags to the curb. He could still do it but tires quickly from the pain in his knee.

Actually this pain is the greatest physical problem that we have. He was the brains and the muscle of this family. And the muscle tone went rapidly when the arthritis pain caused by the knee deterioration became too great. Because of the Parkinson's disease, he is not a good candidate for any surgical procedures on his knee. PD stiffness coupled with the arthritis caused a very rapid decline in tone and strength. Loss of muscle tone aggravated the bow now seen in his legs. Pain and medication caused the decline in stamina.

The tremor is present in his left hand but it is a minor thing which he resents and I don't give much attention. That slight tremor has caused so much trouble for early PD patients who begin to take stronger meds to hide symptoms. Their fear of that identifying symptom of PD being recognized creates the greater fear of being fired ...which in turn leads to distraction at work...because after all, your employer only signed on for better...which makes it worse.

The hearing loss has been a gradual problem for years. He has a hearing aid but doesn't wear it often. I nag him to take his eyes off the road so that he can hear me while we're talking. He forgets that he has a "good" ear on the far side. It's okay, I'm driving.

So here's some good stuff. Steve is, as everyone knows, going to water therapy which he really began when I was in Florida and he would exercise in the pool - very similar exercises, I might add except for the walking. That pool had a deep end, the one at the therapy center does not. He's doing Nautilus and other exercises from a program designed just for him. And there is some improvement.

He understands about increasing his stride but since this former cross country runner always had a short walking stride, it is that much more difficult to increase it.

The arm swing is another problem which is being addressed at the therapy center and in massage therapy. I haven't seen much improvement but it certainly isn't worse...which with PD, may be an improvement. What makes me feel good is when he says he can feel a difference. His triumph is our triumph.

Sense of smell is almost gone - never was that good. Sense of taste...well, we use different varieties of pepper to hit the tongue on the way in.

I can't talk about sex here because our daughter reads this blog and she doesn't like to think that her parents ever...let alone discuss it. We all know that she was delivered to the hospital in a lovely basket by the stork. She knows about storks and chimneys because she used to live in the Netherlands.

Some of my household identity came from the repairs/remodeling which Steve made around the houses we've lived in. The first house had a new enlarged kitchen, a brand new powder room and a remodeled bathroom all due to his excellent handiwork. This house has not fared as well with remodeling but has had plenty of repair work. He stopped working much on the house when he went into contracting...need I say much more?

Yes, the remodeling is waiting for...? I'm a terrible plumber but in the next few weeks, he's going to teach me how to replace the kitchen drain. We replaced some underlayment (I pried and he supervised) in the kitchen in October and between the two of us, we repaired the furnace in November. So while I would prefer that he do this work while I do almost anything else, it has brought us into closer cooperation.

I bite my tongue less often now when one of us makes suggestions about supplements to try. He's repeatedly reminds me that he can't go back to the 1990s to take CoQ10; he's taking it now. Back then he thought it was all witch doctor stuff. Now he not only listens, he reads, he discusses and he tries the ones that seem to have the most promise.

The latest supplements are a revisit to turmeric (curcumin) and a test of glutathione (with NAC) and milk thistle. And they seem to be helping. I see it in cognition skills returning and an attitude change. He's getting Jeopardy answers that even contestants are missing. That makes my heart soar. I think we need to learn to Tango soon.

I know he'll never have the brute strength he used to have and I know that there may be many changes to come, but like most PD families, we have to live with hope for a cure in our future and that of all neuro-motor patients.

See, it's not just about him, this disease; PD is an Us disease.

Marge

For some fascinating info about curcumin, take a look at this site