MS is a devastating disease that can be very difficult to cope with and can ultimately affect your family life.
MyHealios are committed to providing a unique support program through family behavioral therapy that aims to address cognitive issues faced by those living with MS and their partners.
One of the most challenging symptoms of MS is cognitive difficulties where many people suffer with memory issues, scheduling and problem-solving concerns and overall slower processing of information. This can put a huge pressure on the MS sufferer and can lead to depression, isolation and relationship issues with family caregivers. MyHealios is committed to supporting those affected by the impact of chronic diseases through family-behavioral therapy that is flexible, convenient and focused around the person with MS and their partner.
MyHealios is currently running a study in the New Jersey State (USA) to determine what the key concerns are and what individuals and their partners would find beneficial through family behavioral therapy. We aim to evaluate the impact cognitive issues have in terms of their work life, independent living and household tasks, their ability to be involved with family activities and the overall impact on their relationship with their partner. We aim to conduct a series of interviews with all parties so that we can define exactly what support would be most beneficial. This exercise will determine what support we develop for our future MS support initiatives.
If you and your partner would like to be involved please call
PHONE: 908-731- 5061
What is Multiple Sclerosis?
Multiple sclerosis is a condition where there is a disruption within the insulation of the nerves around the brain and spine. While the cause is not exatly known, what is known is that it affects people between the ages of 15-60.
Caring for someone with Multiple Sclerosis
Being close to someone who is living with MS can affect you and everyone in their social network and it is important to seek help and support when needed. Knowing what someone is going through and appreciating how it affects them on a daily basis and learning skills to cope with the pressures this puts on the family is essential to ensure a happier environment for everyone. Being the support for someone suffering with MS can be a daunting task, from the general physical support with mobility, dressing, bathing or getting about to managing the finances and working with social care and employers to ensuring that loved ones have access to all the support available to them. Living with MS can put a strain on a relationship and can lead to caregivers developing physical and mental health issues themselves.
Overview of condition
Multiple sclerosis (MS) is the most prevalent disease in young adults globally and affects around 400K people suffer in the US and 2.5 million people worldwide. It affects the autoimmune system within the central nervous system, your immune system mistakes myelin (the coating around your nerve fibres) for a foreign body and attacks it, stripping it from the fibres leaving scars (lesions), however, much research is still ongoing as MS is unpredictable and its rate of progression hard to define.
MS is generally detected around age 20-40 years and women are twice as likely to get MS than men. It is not an inherited condition but there is some evidence that there is a genetic predisposition to developing the disease. The most common early symptoms of MS are fatigue, vision problems, cognitive issues, mobility difficulties and psychological concerns.
For a lot of sufferers learning they have a chronic disease like MS is devastating and hard to comprehend, and coping with the impact on their daily lives is a challenge. The effect on a sufferer’s life is vast and can seriously affect their work, social and home life, for care givers it is equally difficult, helping with mobility and cognitive issues, supporting a loved one when depressed or suffering mood swings puts a huge pressure on a relationship and the family structure.
Types of Multiple Sclerosis
Benign MS Can be detected by an MRI scan but otherwise exists without symptoms with little or no disability.
MS Pediatric Children can develop MS, many of whom suffer with problems with cognitive function, movement issues and tremors, they tend to have issues at school due to this condition.
PPMS, (Primary Progressive MS) From first primary symptoms the disease is progressive, symptoms gradually get worse over time, rather than relapses. Average 40 – 50 yr old can get relapses over slow symptom increase. 10% of those diagnosed have PPMS of which 5% transition to RRMS as the condition progresses.
RRMS (Relapsing Remitting) Distinct attack of symptoms which then fade away either partially or completely – they initiate over a 24 hour period or more and can last 4-6 weeks. 85% of those diagnosed have RRMS.
SPMS (Secondary Progressive) A secondary stage of relapsing remitting MS where a sustained buildup of disability, independent of any relapses occurs. Incomplete recovery from relapses contribute to the gradual progression of the condition. 50% of RRMS patients transition to SPMS.
Signs and symptoms
The most common early symptoms of MS are; tiredness, vision problems, numbness, dizziness, muscle problems and spasms and problems with balance and co-ordination but you may also suffer with many other conditions like cognitive issues, mobility difficulties and psychological concerns.
Memory loss, speech problems, co-ordination
Fatigue, tingling and numbness, dizziness, muscle weakness and spasms, problems with balance and coordination, difficulty with walking
Mood swings, depression, fear, sense of loss, grief, isolation, withdrawal from others
Bladder and bowel dysfunction, vision problems, Swallowing problems, sexual dysfunction
Diagnosis of MS can be a long process whereby various tests are conducted to determine the cause of health concerns and the extent of the disease and its progressiveness. All the procedures are generally pain free and your healthcare team will ensure you are made aware of what will happen and the outcomes, if in doubt do ask questions as it is important that you feel safe and cared for.
Neurological exam - A neurological examination is the assessment of sensory neuron and motor responses, especially reflexes, to determine whether the nervous system is impaired.
MRI scan - Magnetic resonance imaging (MRI) is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body. An MRI scanner is a large tube that contains powerful magnets. You lie inside the tube during the scan. An MRI scan will determine the extent of lesion damage and to monitor the progression of the disease.
Evoked potential - Evoked potential (EP) tests measure the electrical activity of the brain in response to stimulation of specific sensory nerve pathways.
Lumbar puncture - a medical procedure where a needle is inserted into the lower part of the spine to test for conditions affecting the brain, spinal cord or other parts of the nervous system. During the procedure, pressure is measured and samples of cerebrospinal fluid (CSF) are taken from inside the spine.
There are many ways MS can be managed and disease progression reduced, these include medication - DMT’s (disease modifying treatments), exercise programs, house adaptation, physiotherapy, acupuncture, reflexology, cognitive therapy and disease support programs.