Showing posts with label DBS. Show all posts
Showing posts with label DBS. Show all posts

Thursday, March 11, 2010

Attention for Young Onset Parkinson's Disease


There isn't nearly enough discussion of early or young onset PD

Young Onset Parkinson Conference

National Parkinsons Foundation-NPF and the American Parkinson Disease Association, Inc are co-sponsoring the 2nd
Joint Young Onset Parkinson Disease Conference in Sacremento, California. We are all fortunate to be able to join part of the conference from the comfort of our homes on Saturday, March 13, 2010 - 9:00am to 1:15pm Pacific Time and noon to 4:15pm Eastern Standard Time.

All you need to do is to register at the APDA website and tune in at your equivalent time zone start time. Or you can select the sessions you wish to see and join then. So click on the link to go to the American Parkinson Disease Association (APDA) to register for the webcast
Below is the Saturday, March 13th Webcast Agenda
The webcast agenda begins at 9:00 am pacific standard time for us we:ll join at Noon EST

9:00-10:15 am
The Electric Brain: Tailoring DBS Therapy for Parkinson’s Disease Patients
Michael S. Okun, MD
10:45 - 12:00
Complementary Therapies: Expanding your Symptom Management Options
Melanie M Brandabur, MD, MDS
1:30 - 2:45 pm
Update on Gene Therapies for Parkinson’s Disease
Michael J. Aminoff, MD, DSc, FRCP
3:00 pm - 4:15 pm
Parkinson's Disease Treatment: Is Exercise Really Medicine?
Jay Alberts, PhD
We've watched several short videos by Dr Alberts and we're really excited about the chance to hear a longer discussion. It is possible that in addition to the benefits of exercise and specifically of Forced Exercise which has been shown to reduce symptom severity and reduce reliance on medication for up to 4 weeks after cessation, there may be a benefit for neurogenic orthostatic hypotension. We're only speculating on the last but we're hoping to hear that on Saturday.
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From Parkinson's Action Network (PAN)

NETPR - Neurotoxin Exposure Treatment Parkinson's Research program received $2.5 million for fiscal year 2010 in the Department of Defense Apropriation bill. This funding is an add- on each year which means that every year an effort must be extended to have it included.
The 2/17/10 16 Annual Research and Public Policy Forum has been archived but is difficult to locate at the PAN website. It is worth watching in segments, however. And as soon as we figure out how to open it, we'll let you know. If you find it first, please let us know.
Friday, March 26th 2010 is the deadline to ask your Senator to support NETPR.
Last week after the PAN webcast we wrote about the need for everyone to do their part to develop a Registry database for PD and MS that can drawn from current sources. Everyone benefits.. From the Parkinson's Action Network comes the update on the support for the National MS and Parkinson's Disease Registry.
The Importance of Advocacy
If you need a better understanding of what it is the PAN really does and why it is so important, watch the PAN Advocacy video
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Because there are few groups for a sister disease, MSA, and less research, we thought that we should mention this news From Facebook:
Although unofficial, Miracles for MSA (Multiple System Atrophy) has asked that we observe March as MSA month. Since some people have probably been misdiagnosed with Parkinson's disease with a rapid progression when in fact they may very well have MSA, it is only fitting that we should respect and honor that wish.
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I'm sorry to say that there is still no news on the Neupro Rotigotine Transdermal Patch horizon. We'll post as soon as there is some positive news about its return to the US. There are Canadian sites where it can be ordered. We've done a bit of shopping online and the prices are high. We're working on that article and will try to get it posted in a few days.
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For those who are experiencing Neurogenic Orthostatic Hypostension as a symptom of PD or medications or MSA as a result of deficient release of norepinephrine, Droxidopa from Chelsea Therapeutics while available in Japan is still in Phase III clinical trials. We have learned that for MSA patients it can be made available on an emergency hardship basis through your physician.
We'll be writing more as it is closer to being approved by the FDA.

We're enjoying the pseudo March Spring before the next onslaught of midwest snow.

The dogs waited patiently for hours below a tree for the squirrels to come down to play. No fools, the squirrels did not descend to that level.

Friday, December 11, 2009

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 proteinsMoreover, 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.

Wednesday, March 25, 2009

DBS Surgery Basics for Parkinson's Disease

Treatments for PD: Deep Brain Stimulation

We already know that not all PD patients are eligible for Deep Brain Stimulation and that it appears to be effective for some but not all of the people who do receive the treatment. DBS is used in some advanced stages of PD that do not respond well to meds in order to reduce tremors and involuntary movement. It is used in younger and older patients alike. According to CNN, more that 35,000 people have undergone the procedure worldwide. According to one study when successful, DBS a 71% showed an increase in "on" time to about 4.6 hours. In that study about 40% of the patients demonstrated some adverse affects.

Deep brain stimulation (DBS) is a surgical procedure which consists of implanting high frequency electrodes in the subthalmic nucleus (movement center) in order to stimulate neurons to produce brain-derived neurotrophic factor (BDNF) through an implanted pacemaker-like device. Essentially the surgery when successful interrupts the faulty signals of dopamine cell loss. It targets the subthalmic nucleus, thalmus or globus pallidus as predetermined through an MRI or CT. The result is that many Parkinson's patients who receive the treatment find that they require less medication for the PD symptoms they have. The PD treatment is given unilaterally to many patients, bilaterally to others. Some opt for one side only to determine who it will work for them.

The complicated procedure is not without its negative side effects in some cases. There have been neuro-cognitive changes even when there is improvement in motor function. Depression, falls, gait disturbance, motor dysfunction, dystonia, balance and cardiac issues are also side effects in some patients. Sometimes there are infections at the pacemaker site which is usually in the chest. These symptoms may depend upon where the electrodes are placed. If Optogenics is developed to the point of state of the art for PD and use in DBS, we will certainly see far more precision in the placement of the electrodes.

The procedure itself occurs under local anesthetic so that the patient can be awake. The patient's head is immobilized in a frame and an MRI is done to pinpoint where the electrode is to be implanted. Two incisions are made in the skull and the microelectrode is passed into the brain. Current is passed through the electrode and increased while the patients responds to questions and performs certain movement tasks. After trial and error, the correct location is determined and the permanent electrode is placed and secured. The hospital stay is usually a few days.

After the swelling has subsided usually about a week later, the neurostimulator wires are connected to the electrodes. The pacemaker is placed usually in the chest. It may be another two to four weeks before it is turned on. In theory the patients can control the current flow through the pacemaker which is usually implanted in the patient's chest. In actuality the patient meets with the neurologist several times for stimulator adjustment.

The stimulation can be adjusted or turned off unlike the thalamotomy which Michael J Fox underwent seven years after his diagnosis, DBS is reversible in that it can be turned off or adjusted as in cases where tremors recur. When sucessful, the results of DBS can be a radical and remarkable change.

DBS is being used as an alternative therapy to thalamotony and pallidotomy which are permanent irreversible surgical procedures, It is used for control of PD tremor and control of essential tremor. It is being investigated for primary dystonia (involuntary muscle contractions) as well as for intractable epilepsy, cluster headaches which are usually vascular and associated with high blood pressure, chronic intractable pain, morbid obesity and obsessive-compulsive behavior (OCD)

One thng that is important to remember if you are considering Deep Brain Surgery is the Neurosurgical Team that will be performing the surgery. Don't be afraid to ask those questions about their experience and track record. Patients need to be proactive about their treatments.

DBS is not an inexpensive surgery. Costs can vary from $50,000 to $120,000 although in many cases are covered by Medicare and private insurance. Nonetheless, the co-pay can be very high.

In most clinical trials, patients with atypical symptoms, surgical contraindications such as MRIs or past PD surgery are excluded. Most studies will take both genders up to 75 or 80 years of age. What is necessary is that patients must fully disclose their medical history which includes psychiatric history; a desire for the surgery without full disclosure can lead to unexpected side effects.

So who does DBS work for or rather why does it work? How are the cells calmed or stimulated by the electrical shocks they receive? That still isn't clear but researchers in Scotland are exploring the idea that by stimulating other areas perhaps they can affect postural symptoms and gait issues also. One thing that is known is that when successful, DBS can improve the quality of life for the recipient.

Addendum:
On April of 2009, 50 DBS experts assembled to share experiences with Deep Brain Surgery procedures. They reached a consensus, per a recent news release issued by the UCLA Los Angeles Newsroom on October 10, 2010.

The findings include the best candidates for DBS; the importance of having an experienced team with an expertise in stereotactic neurosurgery performing the surgery. For some patients, DBS can be used for patients who have had PD surgeries. It is important to remember that certain treatments of the subthalmic nuclei can increase depression. And a reminder that surgery has complications with infection ranking highest.

You can read the full news release at the UCLA website.

References:
The first link is for DBS clinical trials - both closed and recruiting.
VIDEOS about DBS
You can watch video clips for PPN, dystonia and tremor.
And have your choice of many clips at YouTube.
If you live in Norway, there is a DBS clinical trial currently recruiting:
Clinical trial BCT00855621
Contact: Dr Mathias Toft 4799514189
Open to: 18-75 years
Gender: both
To study motor function, quality of life and cognitive function
Who is a good candidate for Deep Brain Stimulation
The medical history of DBS

Coming next:
Spinal Cord Stimulation
Optogenics
Magnetic Stimulation

Friday, March 20, 2009

Brain Stimulation Breakthrough for Parkinson's Disease

Possible PD treatment without risky surgery

Today I've been reading a fascinating article in the New York Times about a recent new approach to treating Parkinson's disease. It describes spinal cord stimulation in dopamine-deprived rats where a mild electrical current flows up the rodent's spinal cord and into the brain. As long as that current is maintained the rodents regain their ability to move normally.

This procedure in being tested in monkeys now because humans and monkeys are the only two species which get PD naturally. If it is proven to be safe and efficient, spinal cord stimulation will be a potential alternative to DBS since it requires no risky invasive surgery to plant electrodes deep in the brain. It may be effective for some of the 70% of severely impaired PDers who do not qualify for deep brain stimulation.

This could represent a major paradigm shift in available treatments. It is not without drawbacks-tradeoffs, however since one side effect is reported to be a never-ending mini-vibration described by Dr Ali Rezai, director of the Cleveland Clinic Center for Neurological Restoration as "pins and needles."

Read more:
http://www.nytimes.com/2009/03/20/health/20spinal.html?_r=1&ref=health