Redefining Life After DBS – Mt Kilimanjaro

What defines our patients? Is it a rating scale, a stage of disease or dose of medication? Should we make allowances or give in to a perceived limitations? Could we alter the disease course with empowerment by raising the bar of expectations?

My patients’ commonly describe a past filled with distant memories in a body that had found a new normal called Parkinson’s. But do we really know what is possible despite Parkinson’s? Is the pursuit of high adventure a crazy idea that should not be attempted by someone with Parkinson’s? Friend and fellow climber Nathan says no, anything is possible after a diagnosis of Parkinson’s, even when Parkinson’s requires DBS to control symptoms.

Nathan and three fellow climbers with PD moved past our perceived ideas about Parkinson’s. Sierra Farris and neurologist Dr. Monique Giroux traveled as medical team supporting and encouraging individuals with Parkinson’s and Multiple Sclerosis to realize life-long dreams and goals that measured beyond most perceptions.

The Leap of Faith Team consisted of fourteen people living with Parkinson’s disease or Multiple Sclerosis and twelve companions to climb Mt Kilimanjaro in Tanzania Africa July 2011.

The twenty-eight member climbing team was led by Lori Schneider, the first person with MS to climb the seven summits and is an international symbol of the courage and determination necessary to reach beyond the limits.

Through strong camaraderie, team members supported one another and celebrated daily victories that brought tears of enjoyment with each passing day. The team charted their course and the ideas about disease was left behind.

The  adventure encouraged and empowered others to not be defined by their disease but by their abilities and reach beyond a diagnosis. We learned that to alter the course requires believing in one-self as worthy of trying. The climb was about hope, empowerment and support for those living with PD, MS or any challenging condition. It is so important not to be defined by a disease or to give in to what others or society expects that you can or can not do. By coming together this team increased awareness for Multiple Sclerosis and Parkinson’s and showed the world that anything is possible with hope, determination, courage, empathy and support!

Top Benefits of DBS

What are the top-ten benefits we expect from DBS? The information in this post assumes the stimulation settings are optimized and electrodes are adequately positioned in the brain.

  1. Rigidity – muscle stiffness is typically a problem in Parkinson’s and can coincide with muscle pain typically in the shoulder or across the lower back. Stiffness and pain that improves with PD medications should also improve significantly with stimulation. As stimulation power increases, stiffness decreases until the muscle is moving freely and in most cases, pain associated with PD is much improved. If the body has other causes of pain, the pain may or may not improve completely. Dystonia is a common symptom of PD and feels like a tightening or cramping of a muscle and may be more of a problem when medications are wearing off, at peak dose or during exercise. Dystonia typically improves substantially with stimulation.
  2. Bradykinesia – slowness of movement is almost always a symptom associated with PD. Slow movement can steal away energy, cause problems getting up, rolling over, and getting out of the car or off the toilet. Slowness of walking is more obvious when PD medications are wearing off or too low of a dose. Stimulation improves slowness significantly and the body moves at a pace that is closer to normal.
  3. Tremor – tremor that occurs when the arm or leg is at rest or when the arm is moving responds well to stimulation. Chin, head, and voice tremor also respond to stimulation but has less predictable response to stimulation than arm or leg tremor. Typically stimulation will reduce tremor by 70% and sometimes more than 90%. The success of stimulation for tremor depends on the characteristic (pattern) of tremor. Stimulation can abruptly stop tremor, however this is considered a side effect if also associated with acute onset of muscle tightening, speech slurring, swallowing problems, facial contortions, blurred vision, walking problems or gait freezing, worsening balance or slowness.
  4. Shuffling & Posture – these two symptoms are usually related. If PD medications improve shuffling and/or posture, we expect stimulation to improve shuffling and posture. Sometimes these mid-line body symptoms improve only to become a problem later and is important to investigate for overstimulation or too low medication  and can be related to symptom progression.
  5. Speech – if PD medications improve speech, we expect stimulation to improve speech. If speech improves only to become a problem later, we investigate for overstimulation or too low medications and in some cases worsening speech is related to symptom progression.
  6. Sleep quality – stimulation almost always improves sleep disturbances related to PD. Sleep can be from several causes in some cases. Most importantly, if sleep apnea is a problem, treatment should be discussed with the physician and not discontinued without direction of the physician.
  7. Medication reduction – if stimulation improves the above symptoms as expected, medications are not usually needed at the doses used before DBS. Once medications are gradually reduced, dyskinesia becomes much less of a problem and may go away completely.
  8. Fatigue – feeling tired can be related to many factors and should be approached from a comprehensive approach. If fatigue becomes worse after stimulation is turned on, the cause may be related to stimulation settings, medication reduction or a body not quite ready for the increase in activity after DBS. Stamina may be very low before DBS and should be a targeted treatment after DBS in all patients.
  9. Weight gain – weight gain is not typically abrupt after stimulation is turned on but occurs over the following 12-24 months. Best defense is to increase calories burning activities and muscle mass. In some patients, weight gain is a positive change in the setting of chronic weight loss from Parkinson’s.
  10. Long-lasting – stimulation keeps working year after year as long as the battery is changed at the appropriate time and the stimulation settings are appropriate. Overstimulation is a large factor in worsening symptoms that can be reversed with a change in stimulation.

The above symptoms should be reviewed in detail prior to DBS surgery. With a good understanding of the person before DBS, troubleshooting stimulation problems becomes challenging and may require a troubleshooting expert to sort out. If the workup prior to DBS is adequate and DBS is offered, the therapy should always work for the symptoms that are responsive to PD medication.  There is a risk of worsening cognition and mobility from the implantation of the electrodes. For best results, the therapy should be performed and managed by expert DBS teams.

Sierra Farris is an expert DBS troubleshooter in Denver Colorado. Sierra offers a VIP program for people with poor results from stimulation.

Considering DBS Earlier in Parkinson’s

Deep brain stimulation (DBS) improves overall quality of life and social functioning in patients in earlier stages of Parkinson’s disease, according to results of a two-year clinical trial.

The study, led by Günther Deuschl, a professor at Christian-Albrechts-University in Kiel, Germany, and Yves Agid, a professor in neurology and experimental medicine at the Hôpital de la Salpêtrière in Paris, France, is reported online in the New England Journal of Medicine on 14 February 2014. The researchers conclude that DBS was more effective than medical treatment in patients with Parkinson’s disease and early motor complications.

DBS is already established as a treatment for patients with advanced Parkinson’s disease.

It is not a cure, and it does not stop the disease from progressing, but in the right patients, it can significantly improve symptoms, especially tremors, and it can also relieve muscle rigidity. To perform DBS, the neurosurgeon drills a hole in the skull and inserts an electrode about 10 cm into the brain. The electrode delivers mild electrical signals that disrupt and block the brain impulses that cause Parkinson’s symptoms. A wire under the skin connects the electrode to a battery implanted near the collarbone. DBS can be done on one or both sides of the brain. The target areas are usually the thalamus, subthalamic nucleus, and globus pallidus. In this study, the target area was the thalamus.

The Study

The purpose of the 2-year clinical trial, called EARLYSTIM, was to assess the use of DBS in earlier stages of Parkinson’s disease, when “motor complications have just developed and before patients are significantly affected in their social and occupational functioning”. The study recruited 251 patients with early motor complications and randomly assigned them to receive either DBS or best medical treatment. The patients were of average age 52 and had had the condition for an average of 7.5 years. To measure effectiveness of the treatment, the researchers assessed quality of life measures from a questionnaire known as PDQ-39, and social functioning from a short psychosocial questionnaire known as SCOPA-PS. They assessed changes in key areas of motor disability and activities of daily living using the scale UPDRS II. They also assessed any improvements in complications resulting from use of Levodopa, one of the main drugs used to treat Parkinson’s.

Overall Results Show DBS Superior to Medical Therapy

The results showed that patients who received DBS had a 26% improvement in quality of life scores compared with no improvement in the medical treatment group. There was a similar result for social functioning. The results also showed that compared to medical therapy, DBS was significantly superior to medical treatment with respect to motor disability, activities of daily living, levodopa-induced motor complications, and time with good mobility and no dyskinesia.

Among adverse side effects, suicide or attempts at suicide were not very different in the two groups, suggesting the cause lies with the patients rather than the type of treatment, something that is important to take into account in patient counseling, note the authors. Deuschl says in a statement:

“The study showed surprisingly homogeneous results in favor of DBS compared with medical treatment. The most important result is that quality of life of these patients and their social functioning was significantly improved. It is also meaningful that the operation has fewer side effects in this younger population than in advanced disease,” he adds.

Implications

Deuschl suggests that the study has the “potential to change the international guidelines for the treatment of Parkinson’s disease and will put DBS as a treatment option at a much earlier stage of disease severity.” In an accompanying editorial, Caroline Tanner, an epidemiologist who lectures in health research and policy at Stanford University, describes the study as “one of the most rigorously conducted trials of neurostimulation”. However, she warns that the patients in the trial were not typical Parkinson’s patients: they were all under 60 years old when they underwent the surgery, they didn’t have dementia, and on the whole they responded well to the medication. Matthew Stern, Parker Family Professor of Neurology at the University of Pennsylvania, says: “While it is premature to recommend DBS to all patients with motor complications, particularly earlier in the course of PD, it can now be considered a treatment option in this group of individuals.” He says these results “will surely fuel the debate on the impact of DBS on disease progression further and underscores the need for long term follow up of the EARLYSTIM patients”.

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