A book for people interested in or already living with DBS
DBS A patient guide to deep brain stimulation
by Sierra Farris PAC and Monique Giroux, MD
Visit this link to order your copy. www.dbsguide.com
This book distills a high tech brain surgery into understandable terms for every reader. This guide offers a wealth of information whether new to DBS or already living with DBS. The authors bring 14 years’ experience working as a DBS team in treating over 1000 DBS patients. Their easy to read format is packed with practical tips in a patient-centered approach. The authors hope to promote patient empowerment by offering insights that are rarely shared outside the clinic appointment. Being well informed is the first step in making the right decision for you.
Deep brain stimulation offers years of symptom relief for people with Parkinson’s disease, tremor and dystonia. DBS may even modify the disease course and improve quality of life when other therapies are not enough. As medical consumers, patients must become their own advocates to ensure that they are well informed, especially before agreeing to brain surgery. Filled with case studies, personal stories, practical tips and unique graphics, this book offers in-depth easy to understand explanations for one of the most high tech procedures that can turn back the clock on neurological disease.
DBS programming expert Sierra Farris, PAC explains that “the day you have DBS surgery is the first day of the rest of your life. Make sure you know what you are getting into and even more important, feel confident with your chosen team.” These words echo the sentiments of both authors and their patient centered approach to care.
Chapters include detailed explanations of DBS therapy, expectations for improvement, the surgical evaluation process, and surgical procedure. An emphasis on stimulation programming principles and troubleshooting steps for poor outcomes remains an important aspect to a life-time of therapy. Long-term care tips, DBS specific lifestyle tips and caregiver impact is discussed. Finally, myths and controversies make this book unique and an important guide for you- the patient.
REM sleep disorder is a condition described as active, vivid and sometimes violent dreaming. Bed-partners describe restless dreaming that can include talking, screaming, punching and even getting out of bed to physically’ act out a dream.’ This condition occurs during REM (rapid eye movement) stage of sleep when dreaming happens. During REM sleep our bodies lose muscle tone preventing movement while dreaming. During REM sleep disorder, body muscle tone or ability to move is maintained. This, coupled with active dreaming, can lead to sleepless nights and harm to the person or their bed partner.
REMSD can be present as an isolated condition or a condition associated with disease such as Parkinson’s or Lewy body disease. In fact, REMSD can predate movement problems of Parkinson’s disease and is being studied as a risk factor for developing the disease.
The active and vivid dreaming of REMSD is different from hallucinations although an individual can have both problems together. This problem should be evaluated to prevent physical harm and to improve sleep. The following tips can be helpful:
- First, inform your healthcare provider about this problem
- Review your use of bedtime medicines such as Benadryl and antidepressants that can influence REM sleep.
- Review timing and type of Parkinson’s medicines as medicines that increase confusion and hallucinations may also increase your risk of this problem.
- Avoid alcohol before bedtime.
- Make your time before bed a relaxing time. Avoid watching violent movies, stressful tasks or the evening news. Relax and unwind instead with gentle stretching and music.
- Remove furniture and clutter from the room that would be a trip hazard in the event you ‘act out your dreams.’
- Use you sleep mask or oxygen as prescribed if you have sleep apnea.
- When needed medical treatment can help. Melatonin is sometimes helpful as is a prescription medicine called clonazepam. Clonazepam is similar to Valium so does have additional risks of sedation, confused imbalance.
- Talk to your doctor is you are experiencing thinking or cognitive problems as these problems can be associated with REMSD.
Chances are you will benefit from a physical therapy (PT) evaluation and treatment if you have movement symptoms associated with Parkinson’s disease or other brain condition. However PT does more than simply treat movement symptoms. The objectives of PT vary with individual needs but do include these general goals:
- Evaluate movement problems and recommend therapy early in disease before problems and bad habits occur
- Reduce symptoms of disease associated with imbalance, rigidity, slowness, involuntary movements
- Reduce or delay symptoms of disease progression through targeted exercise such as balance and falls
- Optimize independence
- Optimize your home exercise program with a focus on general health, stamina, disease symptoms and long-term compliance
- Evaluate and recommend specific braces, orthotics, and ambulatory assist devices such as canes and walkers
- Improve safety, enhance confidence and reduce fear of activity such as fear of falling
- Neuro re-education designed to combat the abnormal movement associated with physiologic brain changes of disease, programs such as ‘Big and Loud’
- Promote neuroplasticity or enhanced brain activity through movement
- Promote healthy lifestyle changes to improve activity levels, quality of life and well-being both now and long-term
What is most important is that you advocate for yourself and take a proactive stance by seeking out a therapist even before you have problems. Most people wait until symptoms are significant or cause serious problems such as falls, pain or joint disease.
Advocate for your care.
Ask your doctor of healthcare provider if you can have a referral to a rehabilitation specialist.
Use this checklist to see how rehabilitation and other specialists can be of help to you and as a guide for discussion with your doctor or therapist.
Download and complete your Comprehensive-Care-Worksheet.
Begin by consulting with your medical exercise team (your healthcare provider, physical therapist and exercise trainer with medical expertise). These specialists will help you design a program that takes into consideration the many factors listed below and hopefully design a program that is balanced, practical and manageable. Ask your personal trainer or physical therapist if your program addresses each of these:
- General Health– What is the best program to enhance medical conditions such as heart, lung, diabetes risk, weight management, back problems and arthritis?
- Aging– What exercises will combat the effects of aging such as arthritis, muscle loss and balance.
- Individual Strengths and Weakness– What muscle groups or exercises should be used to strengthen a person’s weaker areas, tightness or imbalances in movement.
- Symptoms– What is best for symptoms such as fatigue, pain, memory problems, or depression.
- Behavior– What program is best tailored for the intense athlete, a nonathletic person, a motivated individual or non-motivated person and other behavioral and/or personal attributes that impact success.
- Goals– What are the goals of the person? What do they want exercise to help them do?
- Parkinson’s– What program will target symptoms of Parkinson’s, enhance and normalize neurological control of movement
- Neuroplasticity– Learning and the impact of the experience are important factors for neuroplasticity. What can be added to optimize the experience and challenge learning?
Movement symptoms such as tremor, rigidity and slowness are the hallmark symptoms of Parkinson’s disease. Yet research confirms that these movement problems are not the main contributors to decline in life quality with disease progression. Trouble with balance and falls are a primary motor problem that occurs later in disease and correlates with a change in life quality. Fortunately early and aggressive Physical therapy and balance exercises can make a difference- whether started early before there is a problem or later after falls occur. The Wellness Center highlights additional information about the role of PT and exercise to improve balance and reduce falls.
Follow these helpful hints:
- See a physical therapy early before you have balance problems to improve your balance and before starting any exercise routine.
- Advocate for yourself and ask your doctor for a referral if you think you would benefit from PT.
- Occupational therapy can help reduce fall risk, offer tips and suggestions to improve your home and community safety by reducing risk of falls
- Remember fatigue and reduced stamina will also increase your chance of falling. Aerobic (cardio) exercise will improve stamina. Get professional advice from your doctor or PT before starting a program.
- Stay hydrated. Low blood pressure from dehydration can lead to dizziness, unsteadiness, fatigue, weakness and confusion- all potential problems that can affect walking.
- The best exercise is often the one that mimics what you want to do- walking and balance. If you can, walk, run, dance, play standing computer games such as the Wii, play tennis or other balance supports.
- Music and a metronome can help you time your gait to a beat.
- Freezing of gait can improve with queing strategies.
- Walking, trekking or hiking poles help with balance.
- Sometimes a walker or cane is needed for balance. This is a positive change not a negative one if this keeps you walking and keeps you safe.
- Multitasking or doing two things at once can worsen balance problems. Try to avoid distractions when possible and focus on the task at hand.
- Yoga and Tai chi can help balance and posture.
Learn more about walking and balance at the Wellness Center.
Posture changes for many reasons- Some causes are related to Parkinson’s- Some related to weakness-Some related to arthritic changes
- Bent Posture. A tendency to bend or flex forward is the most common change in posture seen with Parkinson’s disease. There can also be a tendency to flex or bend to one side. It is not known why this occurs but may be due to many factors including muscle rigidity, brain changes that control posture or dystonia. Muscle rigidity (stiffness) and imbalance of bigger muscles overpowering the smaller muscles can cause you to bend over. The muscles that flex, or forward bend the spine or hip may become hyperactive. These muscles that flex your spine forward and limit hip mobility include: the abdominal muscles, psoas major and minor and iliacus muscles.
- Change in Awareness of Posture. As with many motor symptoms, there can also be a change in postural awareness or your own perceptions of change. When this occurs, you may feel like your posture is straight but it is not. This is similar to what happens with speech (you feel like you are talking loud but your speech is actually soft). Standing straight may seem like an over correction and may sometimes make you feel like you are falling backwards.
- Camptocormia- a severe but uncommon problem. This is another severe but less common posture problem than can occur with Parkinson Disease. It is a severe bending of the thoracolumbar spine or lower back, which is seen during standing and walking and improves while lying flat. This may be severe enough that the upper back is parallel to the floor making it hard to look up or see what’s ahead. A patient with camptocormia is bent forward and possibly rotated to one side while standing, less bent while sitting and able to lie flat on a bed or floor. Learn more
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Hallucinations are often described as “seeing things that aren’t there.” In Parkinson’s, hallucinations are most commonly visual and described as objects, people or animals. For many, they are benign visions that the individual experiencing them knows are not real. In more severe cases, a person may not know the visions are not real or may be distressed by and try to interact with them.
Not all people with Parkinson’s experience hallucinations and hallucinations are not caused by Parkinson’s alone. Hallucinations are caused by a combination of medication, stress and the disease.
The risk of hallucinations is greater in older people, those with cognitive problems, and those taking higher doses of Parkinson’s medicines, narcotics, sleep medicines and sedatives. Learn more…