Understandably, patients struggling with the symptoms of Dystonia would like to have their spasms reduced as soon as possible. On the other hand, brain rehabilitation after dystonia takes time. A puzzling aspect of Dystonia rehabilitation is that changes in the structure and function of the brain may require months or years for some patients and just weeks for others.
In this post I will try to explain why is so difficult to guess how long it will take to recover for a given patient and how simplistic statistics cannot be used to answer this important question.
So, can Dystonia be cured? If so, how long will it take me to stop my symptoms? Why am I not progressing as much as I expected?
It is interesting to note that people who have recovered by 95% and are not getting to 100% ask the same questions with the same desperation as patients who have recovered just 10% and still have a way to go until they can see an improvement in their quality of life.
These questions are very important and legitimate, but require a long answer to help patients understand that the recovery process is not a simple process that can be explained in a simplistic 200-word answer.
Let me start by using an analogy.
If someone asks me:
- Will I be able to climb this mountain?
- How long it will take?
I will not rush into any prediction. Instead, I will start by asking a series of questions such as:
- How healthy you are at this precise moment?
- Have you ever climbed any mountain before?
- How much have you trained in preparation?
- Are you a professional climber?
- What will the weather be like the day you attempt your climb?
As you can see, it is possible to make a prediction, but the outcome will be different for an untrained person who is not healthy at the moment and climbs on a stormy day than for a healthy professional mountain climber who climbs on a sunny day. As you can see, there are a myriad of possible variations that influence the different outcomes at play in any given case.
Let’s now look at how we might predict how long it will take for you to improve if you work diligently towards improving your health and your brain function.
How to Estimate Dystonia Recovery Time
After studying the process of recovery taking place in thousands of individuals during 25 years of research, I have created my own formula to calculate how fast a person can recover from dystonia and how long Dystonia lasts.
This is the equation:
A+C+D+E+F+G+H+I+M+P+R+S+Q+X=180
you will need to reach a score a 180 to have a breakthrough in your recovery.
- A=Age
- C=Cognition
- D=Depression
- E=Previous experience
- F=Family support
- G=Gut health
- H=Health in general
- I=Interaction with drugs the person is taking
- M=Motivation
- P=Physical condition
- R=Rest
- S=Stress during the recovery process
- Q=Quality of the rehabilitation protocol you are following
- X=X factor
Please be aware that your score will increase if you make the necessary changes in your diet, sleep, exercise routine. You score will also increase if other aspects that may be impeding your improvement change, like working less or reducing unnecessary stress in your life. It is a dynamic process, you can start with a very low score that can increase as you are getting results.
Let me help you now to calculate your actual score for each part of the equation:
A=Age (score 1 to 10).
In theory, the younger you are the faster your body can adapt to changes and the easier it is for your brain to adapt to new requirements. Starting with a 10, subtract a point for every decade you have lived. If you are a 6-year-old you score a 10, if you are a 100-year-old you score a 1.
C=Cognition (score 1 to 10).
Dystonia is not only a motor condition. Some patients find that their memory and the ability to focus, pay attention, or process new information is reduced. Some patients will not even finish reading this post because is too long for them to sustain the attention for several minutes of reading. When this happens, it is a challenge because the patient needs to understand the recovery process in order to commit to the program and its holistic nature. Do not worry if this is the case for you. You can also regain your cognitive abilities, but it will add to your recovery process and will slow it down, because being able to pay attention while doing the exercises and being able to understand the exercises is essential in order to repeat them properly. Give yourself a 10 if your attention and memory is not affected and subtract points based on how often you feel overwhelmed when learning or training something new.
D=Depression (score 1 to 10).
Patients affected by dystonia may suffer from depression, it is one of the most common comorbidities. In general patients affected by blepharospasm are most prone to develop depression followed by patients affected by oromandibular dystonia and cervical dystonia. Obviously, every patient is different and you can find people who are not affected by depression in all the dystonia groups and populations. Depression can alter the ability to make changes in your brain function because it may be difficult for you to commit to a training routine or find the motivation to persevere your recovery efforts after a set back. Please note that set backs are normal even in the most successful cases of recovery. Give yourself a ten if you have no symptoms of depression and subtract points depending on the intensity of your depression.
E=Previous experience (score 1 to 10).
This aspect is called cognitive and physical reservoir. For example, if a patient was an avid Yoga and dance practitioner, when the moment comes and in order to recover you need to practice 10 minutes a day of breathing exercises and dance everyday, it will be easier for this person to commit because these practices were part of his or her daily routines anyway prior to dystonia. So, give yourself a 10 if you were a physically active individual prior to dystonia, and subtract points depending on how sedentary a person you were prior to dystonia.
F=Family support (score 1 to 10).
Support is essential during the recovery process. Recovery is tough, even if you are doing great it will have ups and downs, and every single one of us has felt dispirited, hopeless, and considered quitting the recovery efforts. In many cases, your decision to stick with the program depends on those friends or family who push you into trying again in your worst moments.
G=Gut health (score 1 to 10).
This factor is important. If your brain is not properly nourished it will not be able to produce the functional and structural changes that are required in recovering from a condition such as dystonia. Recovery is exhausting for the brain. You must follow a proper diet to provide the brain with the nutrients it requires to continue the recovery process.
H=Health in general (score 1 to 10).
Some dystonia patients are dealing with underlying comorbidities such as cancer, epilepsy, or autoimmune conditions that make them tired and deplete their energy. This can make following a recovery program way more challenging. If you have an underlying comorbidity you need to treat it. The healthier you are the less taxed your brain will be and the easier it will be to focus on brain plasticity.
I=Interaction with drugs the person is taking (score 1 to 10).
This is a factor that requires further research, but some drugs that induce lethargy, slow down your cognitive process etc. may slow down your recovery. Please have a conversation with your doctor about the common side effects of medication, such as brain fog, memory loss, and restlessness.
M=Motivation (score 1 to 10).
Recovery is emotionally, physically and spiritually challenging. Your motivation will be key to finish the recovery process and to overcome all the difficulties that it entails.
P=Physical wellbeing (score 1 to 10).
As you can imagine, it takes longer and it is more challenging to recover from five high intensity dystonias than from just one low degree dystonia in just one finger. Do not worry if you are dealing with more than one dystonia. They are all connected at a deep level. You may find that reducing your neck dystonia also reduces your oromandibular symptoms and vice versa. Give yourself a 10 if you have just one dystonia and subtract a point for each dystonia you are dealing with.
R=Rest (score 1 to 10).
Resting is crucial. If you cannot sleep properly your energy, digestion, cognition, memory, and motivation will be affected. It is paramount to restore proper sleep. If you need help, please consult a sleep expert to help you restart your body into healthy resting cycles. Give yourself a 10 if you can sleep 8 hours a day, a 5 if you sleep 6, a 2 if you sleep less than 6 hours a day.
S=Stress during the recovery process (score 1 to 10).
Stress will increase dystonia symptoms in all cases. Stress management is paramount in order to reduce the intensity and frequency of the crisis. There are many things you can do to improve your score here, from meditation to breathing exercises, from cardiovascular exercise to dancing, find what works for you, and be consistent. Give yourself a ten if you have a minimum of 20 minutes a day when you feel calm and at peace and you are able to stop the constant feelings of background anxiety.
Q=Quality of the rehabilitation protocol you are following (score 1 to 50).
We have many posts and answers on the platform regarding this topic. If the video shows 3 repetitions of a neck exercise and you do 30 you are not making yourself a favor. You may stress the nerves, ligaments, muscles, and exhaust the brain. Please follow the program as it is designed. Sometimes corrections of your routines are necessary, we offer this service in our seminars and classes. Your doctor or physical therapist can also be of help. Give yourself a 50 if you are having plenty of rest and you are following the protocol as outlined. Subtract 10 points for any class you are supposed to follow and you skip regularly. Subtract 20 points if you are just exercising but you are not spending enough time practicing meditation, relaxation, and breathing exercises.
X=X factor (score 1 to 130).
The X factor is the capacity of your brain and nervous system to get into change and repair itself. We could call it the Neuroplasticity rate. This is going to become interesting very soon. The X factor does not have a range of 0 to 10, but from 0 to 130!. This rate changes dramatically from person to person does not correlate with age. A person in his or her 80’s can have an X factor of 90 and a 20-year-old can have an X factor of 20 and vice versa. The X factor may be affected by all the previous factors we have outlined, but we do not have enough knowledge about it to establish direct correlations yet. It could be mostly a genetic predisposition or a quality that some brains express to a higher degree than others. The X factor is the unknown aspect of the process. The only way to know it is by challenging yourself and seeing how you respond.
If you have crunched some numbers, you may have noticed that a person has the highest score in all the factors but has a 0 in the X factor will not reach the desired 180 points. You will need to have at least 10 points in your X factor from the possible 130. So, a minimum X factor is needed to recover. On the other end, you can see that a person with a very high X factor can get the 180 points easily by exercising every day and walking and dancing regularly even in cases where all the other factors were scoring very low (lucky ones!).
If you have read until here you may have realized how unrealistic is to ask a question like “Why I am not progressing after x months training?” without disclosing lots of information about yourself and without performing a complete test of your current health, dystonia and cognitive state.
Examples scores based on real patients
Let’s use the equation to analyze two cases I treated in the past.
Maria, age 55.
Started the process with a challenging prognosis. High-intensity dystonia in the arm and in the neck plus a stage 4 lung cancer. Maria was not especially athletic in her life prior to the diagnosis but was healthy. Sleep was impaired, she could only sleep 5 hours a day. She was anxious. She was very motivated to help herself. Things at home were not easy, she lived alone and her son lived in another country.
Daniel age 34.
Started the process with a high score. He was young. He was always accompanied by his loving wife who supported him and practiced the exercises with him every day. He suffered from some depression symptoms. His sleep was not affected. He was fit and ran several half marathons during the year. He was only dealing with one dystonia in his hand. He did not feel very motivated during the process. Besides his dystonia, his digestion and health were optimal.
Results
Maria scored very low in all factors but motivation so the prognosis was not very optimistic. In a year’s time she recovered from lung cancer stage 4 and her neck and arm dystonia, I could not believe it nor could her doctors. Maria had a very high X factor!
Daniel recovered his function gradually, it took him 5 years of discontinuous practice to get to a point where he was very happy with his improvement and felt that he had made a major improvement. Even though he scored high in many factors his X factor turned out to be low and his lack of motivation did not help either.
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Summary
What I have learned during 25+ years of observing the recovery process aided by Dystonia therapies is that it is impossible to be accurate with your predictions on such a complex process where there are many factors interacting with each other. The X factor concept helped me to understand how even people who at first appeared to have a very poor recovery prognosis were able to successfully recover. The fact that we do not completely understand the neurochemical processes necessary to trigger a particular neuroplasticity process you may need, creates additional difficulty. In a nutshell, the capacity to predict accurately is not close to zero, it is zero! And it is a good thing, committing my entire professional life to the study of dystonia has made me believe in the immense potential that humans have to overcome adversity and recover from multiple conditions and injuries.
The only way for you to know what will happen is by actually doing what you need to do and having enough patience to see the results that will occur in the future.
All the best to you. Remember, do not compare yourself to anybody else, they are dealing with a completely different set of experiences. Be patient. Above all, believe that you can and will feel better in the future!