Dysphagia in MS, Parkinson’s disease and ALS
Neurological conditions like MS, Parkinson’s and ALS can all, more or less, cause reduced ability to use the face’s and mouth’s functions like being able to eat, chew, swallow, speak and smile.
In this section we briefly describe MS, Parkinson’s, ALS and the usual symptoms for their diagnosis. MS, Parkinson’s and ALS differ symptom-wise but have similar problems and requirements for treatment.
Later, we will show how exercise with IQoro can function as a complement to traditional physiotherapy to maintain the health of the body’s, face’s and mouth’s functions as long as possible. IQoro is a new and unique neuromuscular treatment method that requires just 30 seconds’ exercise, three times per day.
Neurological sicknesses affect the central nervous system: both the brain and the spine and also those nerves out in the body – the peripheral nerve system – which sends, for example, signals to and from our fingers and the central nervous system.
Also affected are those nerves that control our inner organs, the autonomic nerve system, which cannot be controlled voluntarily. In summary, all of these nerve systems can be affected to different degrees depending upon which neurological condition is present.
In all of these neurological sickness groups there will exist symptoms of dysphagia, eating-, chewing- and swallowing difficulties to different degrees depending upon the exact condition and its severity.
There is a large range of medical conditions that are classed as neurological diseases, or that affect the central nervous system.
- Sicknesses where functionality is impaired or ceases to exist in cells, tissue or organs: degenerative diseases like for example Alzheimer’s or Parkinson’s disease.
- Multiple sclerosis (MS).
- Stroke.
- Cerebral palsy (CP).
- Tumours, including brain tumours and tumours in the spine and peripheral nervous system.
- External trauma or injuries to the brain, spine or peripheral nerves.
- Infections in the brain like encephalitis and meningitis, for example as caused by lyme disease.
Certain of these sicknesses arise spontaneously through injuries but others occur in bouts or are degenerative. In the rest of this document we cover only MS, Parkinson’s and ALS.
Numbers of affected
The tables shows how many that are affected in the UK and the world, showing the proportion with swallowing difficulties (dysphagia): [10, 13]
MS [1, 2, 8]
- The NHS say that it’s estimated that there are more than 100,000 people diagnosed with MS in the UK.
- It’s most commonly diagnosed in people in their 20s and 30s, although it can develop at any age. It’s about two to three times more common in women than men.
Of these 100 00 sufferers, the MS society estimates that 30-40 percent of people with MS may experience swallowing problems. - In Sweden there are 17,000–18,000 people affected, with approximately 500 new sufferers each year. It is the most common neurological sickness amongst moderately older women in the world, of which approx 50 percent are in Europe. Most common amongst populations in Europe and North America – and very uncommon in large parts of Asia and Africa.
Parkinson’s [3, 4, 7, 11]
- In the UK, the NHS says https://www.nhs.uk/conditions/parkinsons-disease/ that It’s thought around 1 in 500 people are affected by Parkinson’s disease, which means there are an estimated 127,000 people in the UK with the condition.
- Most people with Parkinson’s start to develop symptoms when they’re over 50, although around 1 in 20 people with the condition first experience symptoms when they’re under 40.
- Men are slightly more likely to get Parkinson’s disease than women.
ALS [5, 6, 9]
- In Europe there are between 4.06–7.89 victims per 100,000 of the population and 1.47–2.43 new sufferers / 100,000 each year. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4049265/ More men than women are affected.
- In the UK this translates to approx. 950 to 1600 new cases every year, and a population of 2600 to 5100 sufferers.
- Of these, dysphagia emerges in more than 80 percent of patients during the advanced phases of the disease.
MS – Multiple Sclerosis
Multiple Sclerosis (MS) [1, 2] is a sickness of the central nervous system caused by inflammation and scarring of the nerves. This prevents the nerve signals being transmitted properly, which then affects various functions.
Because various areas of the central nervous system can be affected, the symptoms strike different parts of the body. The sickness exists in several different forms.
MS often comes in bouts with periods of sickness. Over the years the symptoms can give problems even during the periods between attacks. The symptoms vary greatly from person to person.
Common symptoms of MS
- Become weaker, or have poorer control over certain muscles.
- Sensory symptoms, parasthesias: numbness, tingling, pins and needles.
- Impaired balance.
- Eyesight disturbances
- Swallowing difficulties (dysphagia) in 33 percent of those affected.
In Sweden there are approximately 18,000 people with the sickness and 500 new cases each year. The sickness is the most common reason for neurological injuries in the moderately old in the world, of whom roughly half are in Europe. The disease usually strikes between 16 and 55 years of age, and occurs twice as often in women as in men. [8]
There are a range of different options to minimise the effects of then sickness and an important part of treatment is physiotherapy and personal training to strengthen and keep the affected muscles in good shape.
Parkinson’s
Parkinson’s [3, 4, 7, 11] is a relatively common progressive neurological sickness that affects primarily older men. There are, however, cases of 20-year-olds being affected. In Sweden, there are approximately 20,000 sufferers and around 2,000 new patients are diagnosed each year.
The disease is caused when cells in a part of the brain break down, and affect the manufacture of dopamine, which impairs the ability to control the body’s movements and causes them to be slower.
Usual symptoms of Parkinson’s
Each person with Parkinson’s has individual symptoms, some have shaking and others have muscle stiffness as the primary symptom. The common symptoms, however, are:
- Shaking of the hand (tremors) – the first symptom in 75% of cases with, for example, trembling whilst resting, the thumb moving towards the index finger in an uncontrolled motion.
- Trembling in the body, starting first on one side, but in time affecting both sides.
- Stiff muscles.
- Walking becomes shambling.
- Reduced facial mobility.
- Monotonous voice.
- Swallowing difficulties – dysphagia – in 41 percent of those affected.
In Parkinson’s too, physiotherapy is an important part of rehabilitation to reduce the symptoms and improve everyday life.
ALS – Amyotrophic Lateral Sclerosis
In Sweden, there are approximately 700 sufferers of Amyotrophic Lateral Sclerosi (ALS) [5, 6] and about 200 new cases are diagnosed each year. Two of three victims are men. The sickness usually appears between 45 and 60 years old, but younger cases occur too. Swallowing difficulties – dysphagia – are a common symptom in various types of ALS and affect 40–90 percent of sufferers.
There are five varieties of ALS:
- Classic ALS – Amyotrophic Lateral Sclerosis
- progressive bulbar palsy
- pseudobulbar palsy
- progressive spinal muscular atrophy
- primary lateral sclerosis.
Symptoms of these five variants are slightly different but, in most cases, end in almost total paralysis.
Usual symptoms of ALS – speech and swallowing difficulties
1. Classic ALS – amyotrophic lateral sclerosis
- Weakening of the muscles in the arms and legs – appear as first symptoms.
- Chewing difficulties.
- Speech difficulties.
- Difficulty with facial expressions.
- Swallowing difficulties – dysphagia.
2. Progressive bulbar palsy
- Speech and swallowing difficulties, dysphagia – appear as first symptoms.
- A complete inability to speak and swallow – occurs later.
- Problems with arms and legs – in the next phase.
3. Pseudobulbar palsy
- Speech and swallowing difficulties – dysphagia – increasing severity.
- Facial mobility affected.
- Uncontrolled crying and laughing.
4. Progressive spinal muscular atrophy
- Weakness and withering in the musculature in the arms and legs, increasing severity.
- Reduced mobility, gradual deterioration.
- Note: speech and swallowing functions are never affected.
5. Primary lateral sclerosis
- Paralysis in the body combined with stiffness in the musculature, spasticity, slowed mobility and gradual deterioration.
- Speech difficulties.
- Swallowing difficulties.
- Slow progression of the disease over many years.
IQoro – a part of the rehabilitation
IQoro is a new and unique neuromuscular treatment method that requires just 30 seconds’ exercise, three times per day. Exercising with IQoro can contribute to retaining and maintaining as much as possible of the normal functions for an extended period.
This is possible because IQoro activates the internal involuntary muscles in the same way that traditional physiotherapy strengthens arms and legs. Training with IQoro therefore it makes a positive difference in the ability to continue to eat via the mouth, chew, use facial expressions and to form sounds (speak) for an extended time.
IQoro is unique in being able to effectively activate the involuntary musculature from the face, oral cavity, pharynx, and the esophagus, down to the diaphragm.
The treatment is a good complement to physiotherapy as only a short exercise period is required – one and a half minutes per day, and that the training has no negative side effects except for possible exercise stiffness in the early days. IQoro cannot, of course, treat the underlying disease.
Optimise the conditions for successful PEG feeding
Even in those cases where the PEG (Percutaneous Endoscopic Gastrostomy) is unavoidable, it is still of great importance to maintain the muscle functions which are involved in the entire swallowing process: from mouth to stomach.
This is to optimise the stomach’s ability to receive normal amounts of nutrient and to avoid long, drawn-out mealtimes – which can take longer than 30 minutes via a PEG.
Training with IQoro before being fed via a PEG, and stimulating the taste function – perhaps with a net of varying tastes and consistencies in the mouth – during the PEG session, contribute to stimulating and maintaining the muscle functions that are involved in the swallowing process.
Taken together, these actions can improve the conditions for PEG continuing to work.
IQoro acts on the entire swallowing process
Research[14] shows that IQoro acts on, and regenerates, the entire swallowing process. It stimulates the sensory nerves in the mouth, and by doing this, reaches the brain’s control system for the swallowing process, which is closely linked to the control systems for other bodily functions[15], including breathing, the ability to form sounds (speech), facial expression, postural control [12], stomach and intestine functions, and more. This explains why exercising with IQoro can have a positive effect on so many different bodily functions.
It is not scientifically proven that IQoro has an effect on MS, Parkinson’s or ALS sufferers. However, it is highly credible that IQoro can work as a complement, because the majority of research supporting use of the device has been carried out on stroke patients who are also, of course, suffering from a neurological disease.
As well as this, there is clinical experience of treatment of people with the above conditions and over 20 years’ of research.
Text by: Mary Hägg
Associate Professor of Experimental Research in Ear, Nose and Throat diseases at Uppsala University, and Hospital Dental Surgeon specializing in orofacial medicine.
Mary has worked for 12 years as a hospital dentist and for 31 years as Head of the Speech & Swallowing Centre, Department of Otorhinolaryngology, Hudiksvall Hospital, Sweden.
Translation from the original Swedish text by T. W. Morris, MYoroface
Reference sources
- Neuroportalen.com, (2001), Om multipel skleros, Faktagranskare: professor Jan Hillert, HS samt av professor Lars Edström, Karolinska institutet (KS)
https://www.neuroportalen.com/svenska/ms/ms-sjukdom.php
(English translation, ”About multiple sclerosis”).
- Hjärnfonden.se, (2015), Vad är MS?,
https://www.hjarnfonden.se/om-hjarnan/diagnoser/ms/?gclid=CLDNteeb08cCFWHbcgodmqoIfg
(English translation, ”What is MS?”)
- Neuroportalen.com, (2005), Rehabilitering vid Parkinson,
https://www.neuroportalen.com/svenska/parkinson/parkinson-rehabilitering.php#1
(English translation, ”Rehabilitation of Parkinson’s sufferers”).
- Hjärnfonden.se,, (2015), Vad är Parkinsons sjukdom?,
https://www.hjarnfonden.se/om-hjarnan/diagnoser/parkinsons-sjukdom/
(English translation, ”What is Parkinson’s disease?”).
- Neuroportalen.com, (2008), Om ALS (amyloid lateralskleros), Faktagranskad av professor Sten Fredrikson, neurologiska kliniken, Karolinska Huddinge.
https://www.neuroportalen.com/svenska/als/als-sjukdom.php
(English translation, ”About ALS – amyotrophic lateral sclerosis”).
- Neuroförbundet.se, (2014), Symptom och sjukdomsförlopp, Sakkunnig: Anne Zachau, överläkare vid neurologkliniken, Karolinska univ.sjukhuset, Solna
https://neuro.se/diagnoser/amyotrofisk-lateralskleros-als/
(English translation, ”Symptoms and disease progression”).
- 1177.se, (2015), Parkinsons sjukdom,
https://www.1177.se/Vastra-Gotaland/Fakta-och-rad/Sjukdomar/Parkinsons-sjukdom/
(English translation, ”Parkinson’s disease”).
- E. Kingwell, J. J Marriott, N. Jetté, et. al. (2013), Incidence and prevalence of multiple sclerosis in Europe: a systematic review., BMC Neurology201313:128,
DOI: 10.1186/1471-2377-13-128
- Socialstyrelsen.se, (2014), Ovanliga diagnoser, Amyotrofisk lateralskleros,
https://www.iqoro.com/swallowing-difficulties-dysphagia/neurological-conditions-ms-parkinsons-disease-als/
(English translation, ”Unusual diagnoses: amyotrophic lateral sclerosis”).
- Förekomsten av dysfagi bland neurologiskt sjuka, Läkartidningen -93, nr 47. (English translation, ”The occurrence of dysphagia amongst the neurologically sick”).
- Parkinsonförbundet.se, (2012), Om Parkinsons sjukdom,
http://www.parkinsonforbundet.se/meny2/Om%20Parkinsons%20sjukdom/
(English translation, ”About Parkinson’s disease”).
- Hägg M., Tibbling L. Effect of IQoro® training on impaired postural control and oropharyngeal motor function in patients with dysphagia after stroke. Acta Otolaryngol 2016; 136 (7):742-748.
DOI:10.3109/00016489.2016.1145797 http://dx.doi.org/10.3109/00016489.2016.1145797.
- Viss, Stockholms läns landsting, (2016), Dysfagi, Sanna Holstein Jansson, leg. logoped, Per-Åke Lindestad, överläkare, docent, Maria Juslin, leg. tandhygienist, Louise Britse, leg. dietist, Gerd Faxén-Irving, leg. dietist och med. Dr.
https://www.viss.nu/Handlaggning/Vardprogram/ONH-horsel/Dysfagi/
(English translation, ”Dysphagia”).
- IQoro – list of scientific articles.
- Ekberg O, (2011), Röntgendiagnostiska avdelningen, Universitetssjukhuset MAS, Malmö, Normal sväljning inclusive anatomi och fysiologi, (pdf). Hämtad 2015-12-05, kl 15.00,
http://media1.dysfagi.se/2011/06/svaljningssvarigheter.pdf
(English translation: ”Normal swallowing including anatomy and physiology”)