Core elements of our PARKINSON PROTOCOL
The committee uses English as the main language
The European Parkinson Therapy Centre Therapy Protocol is called ReGen™ from the word Regeneration and is based on the 4 pillars of Parkinson
This page covers the opinions of the committee and foundational points of agreement.
- It is essential that the patient is empowered to continue the exercise after their visit therefore explanation and repetition are core elements in the therapy.
- Through exercise and Counseling the patient must be encouraged to take control of their condition and not let Parkinson control them.
- Measurement techniques should be used to help patients monitor their progress (Effect of feedback on learning, M.Lee et al 1990) and together with medical research this data may form part of a research study should the committee decide
- For many people with Parkinson’s disease, depression affects quality of life more than the symptoms such as shaking, according to new research. “At least 50% of people with Parkinson’s have depression,” Michael S. Okun, MD
- Early stage patients experience refusal, apathy and are unaware of what Parkinson is and is not.
- Hospital envionment is to be avoided during early stages.
- A combination of proven techniques is most effective and not one technique on its own. Every patient will require variations in emphasis in the application of the protocol, the Protocol itself remaining unchanged. Non Motor symptoms are as important as the classic movement symptoms.
- The Protocol will therefore cover. Forced exercise, continuous low level exercise, balance therapy, Targeted physiotherapy and Movement and finctional Training, recreational exercise, Counseling, Speech, Cognitive, anti stress, breathing and Biofeedback therapy.
- Forced exercise is better on some symptoms than voluntary exercise (Albert et al 2011). Forced intense exercise may stop the development of Parkinson (Tillerson et al 2009) . “Evidence showed a 35 percent reduction in symptoms of those with PD by the simple act of pedalling a bicycle at 80-90 rpms for 45 minutes, three times a week.”
- The Protocol is primarily targeted at stage 1,2 and 3 patients. Those who do NOT need a Hospital
- The basal ganglia is the part of the brain responsible for automatic movements. This automatic pilot is responsible for guiding our walking and other complex movements such as getting in and out of a chair or bed. Patients need to learn to re-route triggers for movement to the conscious part of the brain (switching to manual). External cues provide temporal (timing) or spatial (size) stimuli associated with the initiation and ongoing facilitation of motor activity (gait). (Rescue project 2004)
- Moderate intense exercise stimulates brain growth factors (Ahlskog et al 2010) and maintains variety of movement and flexibility (Blackburn et al 2011). Learning based exercise increases brain volume and memory (Mahnke et al 2006, Heunicks et al 2008). T Intense exercise spares dopamine and dopamine receptors (Fisher et al 2010). Forced cycling can create greater connectivity between brain regions linked to the disease (Alberts et al 2012)
- Practical aspects of living with the condition must be treated in order to gain more self esteem and autonomy. Writing skills, turning in bed, breathing and relaxation. It is about quality of life , not quantity.
- Therapy should address the four pillars of quality of life. Medical, Physical, Physcological and life style.
- The evidence of over 38 clinical trials strongly supports exercise therapy / physiotherapy as an effective tool in aiding Parkinson’s sufferers BUT more work is required to focus the therapy to achieve the best results (Keus et al 2009)
- External cues may be more beneficial than exercise and the combination of both may provide more benefit in treating Gait dysfunction (Frazzitta et al 2009)
- The protocol recognises the positive results (Ebersbach et al 2010) achieved by LSVT BIG (Farley et al). This involves AMPLITUDE: Largest possible whole body movements SENSORY Re-Calibration: Create new BIGGER motor memories. INTENSIVE Standardized Exercise and EMPOWERMENT: Extensive positive re-enforcement increases activation in motivation circuits of the basal ganglia.Rewards are associated with phasic modulation of DA Increases rate of motor learning Treatment Concepts.
- The centre applies PWR! moves (Farley)
- The Protocol should be applied in a 6 session (introductory) and 13 session (2 week) program. This intense approach stimulates Neuroplastic change
- The Protocol is best applied using all elements of the therapy (see 2.2) using one on one therapist patient ratio.
- Each session lasts between 60 and 90 minutes
- Before any program an evaluation is to be completed (RAM = ReGen Assessment Measurement)
- Explanation and motivation are as important as Physical therapy itself.
- The concept of self Efficacy (Albert Bandura 1977) is a person’s belief in his or her ability to succeed in a particular situation. Bandura described these beliefs as determinants of how people think, behave, and feel. Research results suggest that physical therapists should include strategies to increase self efficacy related to confidence in ability to exercise (Ellis et al)
- The premise of mainstream cognitive behavioral therapy CBT is that changing maladaptive thinking leads to change in affect and in behavior
- Cross-sectional studies have shown that more than 60% of Parkinson’s patients will have at least one psychiatric symptom and, in addition, 50% will have some form of cognitive impairment, 30% dementia and 38% visual hallucinations (Aarsland& Ehrt in Wolters 2006).
- Recent studies utilizing animal models of PD have begun to explore the molecular mechanisms of exercise-induced changes in the path physiology of PD. Yet, many clinicians and communities remain unaware of the scientific literature underlying exercise-induced brain repair or reorganization (neuroplasticity) and accompanying behavioural recovery in animal models of PD (Hirsch 2009)
- Cognitive function is as important as physical. “Use it or loose it”. Attention must be made to cognative stimulation.
- Many of the psychological effects of Parkinson’s disease …. can be at least partially alleviated by individual counseling (Ellgring et. al., 1993). Counselling will be targeted at helping motivate the patient especially focusing on two areas.
1) Supplying information on the condition
2) Showing how to combat the symptoms, depression, stress avoidance ecc
- Parkinson is about choice, a patient must choose to remain active and choose to find new activities they can do instead of focusing on what they cannot. Counselling should help the patient to make the right choice.
- 50% of Parkinson patients suffer from Depression (Okun 2012)
Quality of life can only be maintained by treating and building 4 specific aspects which become the Pillars on which Quality of life is maintained. The failure of one or more Pillar may result in a lower quality of life. The concept of MULTI LEVEL therapy covers all 4 areas.
If a person is Depressed, they are less likely to do exercise and more likely to become negative and say no to activities and cognative stimulation. The Vortex of Apathy (M.Okun). This touches on 3 of the four pillars. The fourth pillar “Medical” then becomes the only solution. Quality of life is difficult to maintain with just one Pillar.
The centre is focused on all aspects but places particular focus on the 3 non Medical pillars.
- Correct dosage and timing of medication
- Relationship with Neurologist
- Understanding effects of Medicines
- Understanding the relationship between medicines and execrcise
- The Placebo effect
- The effect of movement on Parkinson’s (Neuroprotection)
- The need to apply mind and movement together to get sustained Neuroplasticity
- The need for DAILY excercise to maintain improvements (Farley)
- To combine Enjoyment with Exercise to ensure frequency and sustainability.
- The correct type of exercise.
- The benefit of dance and other activities (Should never substitute DAILY exercise)
- It is not quantity but Quality
- Change can be for the better if managed
- The need to take control and to take responsability and not delagate.
- Correct eating and healthy habits
- Combining what is good with what we enjoy
- The dangers of Apathy
- There is a choice.
- Slower lifestyle can lead to benefits
- The effect of stress
- The need to maintain cognative activity
- The application of ACMA protocol (It is not possible to get Action without Acceptance)
- A Acceptance. The need to accept the reality of today, not look to the past or the future
- C Comprehension. Understanding the reality of Parkinson’s. The ability to improve symptoms and slow progression
- M Motivation can only be effective after Acceptance and comprehension.
- A Action. Taking control
- The Placebo effect
- The dangers of Apathy
European Parkinson Therapy Centre
Living with Parkinson’s and the 4 pillars
Our therapy model is based on the concept that there are 4 key elements (what we call Pillars) to maintain quality of life. Medicines are of course at the core but like a house with one wall, it will not keep the roof up. Medicines to a depressed person will not change his or her life. You need all four Pillars delivered in one place intensively.
If you want to learn a foreign language, one hour per week will not work. 2 weeks of full immersion will have a much higher impact. Same for Parkinson’s, an appointment here and a dance class there will not be enough to change our quality of life.
What are the 4 Pillars of Parkinson’s?
1. Medicine of course. It’s what keeps us moving and eases some aspects of Parkinson’s. One well known British Neurologist told me recently. “We know a lot about Parkinson’s but we don’t and can’t know Parkinson’s”. A remarkable truth and probably why this Neurologist is so exceptional.
2. Physical movement is now understood better. Like medicine, it is now understood it must be done daily. Regularity and not quantity is as important.. But what must we do? Walking is a basic and fundamental aspect of daily life with Parkinson’s. It produces a Neuro protective effect, in short it helps slow down Neuro degeneration and is good for everybody but is especially important for us. Tango therapy, gym and physiotherapy are often mentioned but in reality if not done regularly, they have limited effect. Studies show physiotherapy needs to be combined with conscious thought, “think before you move”, this point is often missed and is based on the concept of Neuroplasticity. If we break a leg, we may do Physiotherapy (Physical Therapy) but for us the problem is inside our head so “physiotherapy” must be combined with conscious thought. If we think and correct our posture, length of stride and arm movement and then actually consciously do it, we find that over a short period of time the brain adapts and this correction becomes automatic. Rather like if you sleep on your side and one day have a broken rib and we find we have to sleep on our back. For the first few nights this means little sleep but then our brain accepts the new reality and even after the rib is healed, we continue to sleep happily on our back.
Group therapy is popular too but everybody is different in their Parkinson’s. Take 4 chefs and give them the same ten ingredients and you’ll end up with 4 different meals. If you really want to reduce your symptoms you need to work individually with a specialist to identify, correct and learn to maintain this correction.
3. Life style is perhaps the least understood and hence the less treated. Apart from obvious points about what and when we eat and the avoidance of stress, what is essential to understand is that we have a choice. We can choose to be apathetic and negative or we can choose to take control. We can choose to delegate our quality of life to a Neurologist or to our spouses or we can choose to focus our lives on doing what we can enjoy. Choosing to continue at full speed is not a choice, it’s denial. Full speed is like driving a car fast with an engine that is slowly losing power, at some stage it will breakdown. Life will change but who says we cannot decide how it should change. If we choose to do less but do more of what we enjoy, then quality of life is maintained.
4. Physiological. We use the ACMA approach. We must first ACCEPT we have Parkinson’s, that means accepting something we don’t want but just like ageing, it is a fact. How can we fight something if we do not accept it exists? Like going into a boxing ring with a blindfold, we are going to get hit hard. Take the blindfold off, we can hit back!. COMPREHENSION of the reality of Parkinson makes us stronger as we realize we can influence progression and symptoms. It’s much harder to fight in a war we do not believe in or one in which we do don’t understand the strategy. Only if we accept and comprehend can we be MOTIVATED and this will only be effective if we combine what we need to do with what we enjoy. We cannot stay motivated if we are always doing things we have to do with no reward. Just like Dopamine is released when we do something enjoyable so we become more inclined to take a long walk if it brings a reward like a stop at an ice cream shop or your local pub. These 3 stages bring about real ACTION which we can sustain and believe in. Too many people talk about what we must do (Action) without understanding that we have not yet accepted, understood and decided to do it.
If one of the above Pillars goes down, it may pull down others to. That’s why Apathy and depression are so destructive. We need support not as patients but as people and families.
Taken from the Centres best selling book “Shaken but not Stirred”