Living with Parkinson's and the 4 pillars
We all have a degenerative condition called ageing, yet most people of 70 years do not blame their age for their lesser ability to do things. When we have Parkinson’s this acceptance and adapting to the reality is harder as we are less prepared, but never the less we must adapt and like old age, accept that we are less able.
Our health systems are also not always in our favor. We get the Diagnosis, a packet of pills and an appointment somewhere down the line. It’s a shock to the system and it is little understood that it is a shock to the family too. What are we meant to do? What is going to happen?
Parkinson’s effects the whole family and the whole family needs support and reassurance.
It’s not surprising to know that over 50% of People with Parkinson’s are clinically depressed and that the vast majority do not seek help but head for the nearest desk and hide under it, figuratively speaking! The sad truth about Parkinson’s is that the truth is never made clear.
I wish that when first diagnosed I was told that; “You can reduce symptoms by up to 40%, you can help slow progression, and that your life will become more precious not less if you do and make the right choices”.
Some of us are reluctant to admit that we have Parkinson’s, almost as if we are afraid to be looked upon as different or weaker yet even the person who comes last in an event in the Paralympics is applauded because he or she chooses to fight and indeed anybody who faces adversity with determination is stronger for it
Words like “Parkinson’s made me a better man” or “Parkinson’s was an opportunity” make little sense at that moment of diagnosis. In one famous study the number one thing that destroyed a person with Parkinson’s quality of life was Apathy and depression and not all the usual suspects which are related to motor functions. This point is essential in learning to live with Parkinson’s
Time and time again, I meet families devastated by Parkinson’s and week in and week out we explain that Parkinson’s will change their lives but we get to choose what changes to make. Parkinson’s does not destroy but rather limits what we can do.
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. If we stop caring, we stop exercising and we stop living. We are then left with just the Medicines. Back to square one and worse we enter what one leading Neurologist called “The Vortex of Apathy”. The vortex pulls us down, eliminates Neuro protection and Neuroplasticity and destroys people with Parkinson and the lives of those around them
Looking back at what we were able to do before Parkinson’s instead of all the things we can still do is at the root of many people’s depression. Looking forward we may experience fear and anxiety. “Where will I be in 10 years, what does the future hold”. This put together can create the Apathy so associated with Parkinson’s. The truth is that neither looking backwards or forwards is relevant. Today is very relevant and we should focus on managing and maximizing our lives every day. See the funny side, learn the truth and live a full life with Parkinson’s
People with Parkinson’s have a simple request; We need support not as patients but as people and families.
Taken from the Centres best selling book “Shaken but not Stirred”
Equipment, excercise and advise for living at home
This is one of the most effective pieces of equipement, especially for those who do not have the opportunity to walk enough during the day .
We recommend buying a good mid-range model , that displays : speed , slope and distance traveled ; it is important for optimum use that the platform is at least 48 cm wide .
Use it in the time of day you prefer , DO NOT place it in the garage or any little used room, indeed , you should place it in a place where you can be entertained at the same time : where there is a TV , a stereo , or where you can talk with your family members .
In order to be effective it is important to think about the movements paying attention to the length of the step , the posture control and also the movement of the arms . Concentration will change behaviour and posture.
Use it for 15 minutes EVERY DAY , vary the speed without exceeding 3 km / h .
Another useful tool ! When used correctly and consistently it will reduce the symptoms * ( research J. Alberts et al ) .
We recommend models to monitor the speed ( in rpm or km/h ) during the ride ; we reiterate the importance of putting the bike in a room that offers enjoyable stimulation.
It is fundamental the first time that you use it to identify your ” Comfort ” speed, that is the speed you can sustain without over exherting ; You should then increase this speed by at least 20%. This “Forced exercise” should be maintained for 2-5 minutes . Then return to comfort for 5 minutes and repeat. It is recommended to do this for a 20 to 30 minute period each day.
Our video ( available on request ) is a great way to maintain good flexibility , improve coordination and maintain control of movement.
To make the most, you MUST THINK and EXAGERTATE every activity and not just follow the instructions .
You can find a small introduction to the video on this page ; we recommend the intervention of a Parkinson Neurotherapist to understand and learn better how to get the best results. To order this video “contact us” giving your
Name and Address.
Cost is 15 Euro for DVD or for USB key
Activity and courses
Grocery shopping in a modern large supermarket and walking rather than using the car are basic rules but also gardening , or any daily activity that you enjoy is useful for keeping active . APATHY or loss of interest are signs that we should recognise and fight . Try to do what you like , or even better cultivated a passion ( helping others , collecting objects , paining, etc. ) We know that if we do not use our mental and physical abilities, then gradually they are less and we start to lose them .
EXERCISE IS MEDICINE: If you don’t do it, you will not get the benefits
Daily exercise may be combined with other less regular exercise. Including