MS Ireland’s voluntary Branches are primarily run by people with MS and their families. They are governed by an elected committee to organise the activities of the Branch including all the services and fundraising activities. Voluntary Branches work very closely with the regional offices.
The five voluntary Branches below provide local support and services to people and families with MS in their own communities. The work of the Branch depends on the resources it has, the needs of people in the community and the size of the Branch.
Contact the regional office today if you would like to get in touch with your local Branch.
Chairperson: Mr Michael Farrell
Vice-Chair: Ms Bridie McGuire
Secretary: Ms Florence Gibbons
Treasurer: Mr John White
Chairperson: Mr Pat Burke
Vice-Chair: Mr Tom Byrne
Secretary: Ms Patsy Burke
Treasurer: Ms Teresa Cahill
Assistant Treasurer: Mrs Marie Farrell
Council Delegate: Ms Patsy Burke
Chairperson: Mr Liam Cannon
Vice-Chair: Mr Duncan Pratt
Secretary: Ms Carol Millington Pratt
Assistant Secretary: Ms Yvonne Corrigan
Treasurer: Ms Sharon Dillon
Assistant Treasurer: Mr Damien Barrett
PRO: Ms Yvonne Corrigan
Council Delegate: Mr Duncan Pratt
Want to know what's happening in the South Mayo Voluntary Branch?
Chairperson: Ms Josephine Regan
Vice-Chair: Ms Caroline McCavera
Secretary: Ms Gretta Kavanagh
Treasurer: Ms Mary Melia
PRO: Ms Elyse Kenny
Part 2 of a special feature on Menopause and MS from Bobbie Severson, ARNP from the MS Centre at the Swedish Neuroscience Institute in Seattle, Washington, US. Treatment interventions for symptom management of menopause and MS. An integrated approach to menopause and MS management is desired since the MS specialist may be the first to notice the symptoms of menopause and how they impact MS. He/she may therefore play a critical role in managing these symptoms or directing the woman to her primary care provider or women’s health care specialist/gynecologist. Identifying which symptom(s) are due to MS versus menopause could positively affect treatment outcomes. For instance, if a new symptom such as bladder dysfunction was due to MS, it might require a change in disease modifying medication (DMT), lifestyle, or adjustment of a general symptom management medication (eg. oxybutynin). However, if the new problem was caused by menopause, lifestyle or hormone replacement therapy (HRT) might be a more appropriate choice. Overlap of common menopause and MS symptoms and treatment interventions Fatigue: Fatigue is one of the most prevalent and disabling symptoms in MS. During menopause, fatigue often increases in severity. The health care provider’s responsibility is to evaluate all possible contributors and not assume the fatigue is due to solely to MS and/or menopause. For example, the provider will need to assess such factors as medical history (eg anemia, hypothyroidism, depression, sleep apnea), lifestyle (caffeine consumption, sleep hygiene, activity level, work routine), medications, as well as complementary and alternative health care practices. Target the treatment to the primary problem(s). Tailor the interventions to the individual. Mental health: Depression and anxiety are more prevalent in MS than the general population. Depression can negatively impact other MS symptoms such as fatigue, cognition, and pain. During the menopause transition, women may experience increased depression and anxiety which can further affect menopause and pre-existing MS symptoms. Treatment interventions should focus on psychotherapy (individual counseling, group therapy), social engagement, exercise, and medication management if necessary. Cognition: Cognitive impairment may affect up to 50% of people living with MS at some point in their lives.With menopause, women may also report changes in attention, memory, executive function, and word finding difficulties. Treatment interventions could include neuropsychological testing, cognitive behavioral strategies, and more optimal management of MS and menopause contributors. Bladder: Urinary frequency, urgency, incontinence, and urinary tract infections are common in MS. Menopausal symptoms may also include urinary stress incontinence and urinary tract infections due to a combination of urogynecologic and hormonal changes. These symptoms might be intensified in women with MS who have pre-existing bladder dysfunction. Management to include lifestyle interventions (timed voiding to keep bladder volume low, limiting fluids a few hours before bedtime to reduce nocturia, reduction in bladder irritating beverages to reduce urinary urgency and frequency) and medication management as warranted. Sex: Problems with decreased libido, altered genital sensation, atrophic vaginitis, inadequate vaginal lubrication and alterations in body image, self-esteem and sexuality may occur with menopause and MS. Interventions, regardless of cause, include a comprehensive medical evaluation encompassing a gynecological history and examination, counseling and assessing medication and equipment needs. In assessment, it is important to inquire about abuse and domestic violence since these issues can affect response to treatment interventions. For vaginal dryness, using water-soluble lubricant is helpful. For decreased sensation, vibrators can enhance stimulation. The introduction of new sexual techniques, such as body mapping, can improve intimacy, increase arousal and orgasmic response. A woman may also want to participate in individual and couples counseling to enhance communication and understanding about sexual concerns, treatment options, and goals of care. Much research is being done with hormone replacement therapy (HRT). A woman should discuss this topic with her primary care provider and gynecologist since there are several important factors to consider. Vasomotor symptoms: Many women with MS are heat sensitive. Hot flashes while perimenopausal can aggravate a woman, with MS, who has heat sensitivity and further contribute to sleep loss, fatigue, bladder, and sensory problems such as pain. Vasomotor symptoms may include hot flashes, night sweats, and cold flashes associated with menopause. However, it is important to realize they may be misinterpreted as MS exacerbations. Management to include, but not be limited to, air conditioners, cool drinks, cooling vests and/or collars, layering of clothing, exercise in cool rooms, and use of natural fibers for bed sheets, versus synthetics, since they are the most breathable and can wick away perspiration and keep a person cool. According to recommendations from the North American Menopause Society, estradiol is the most effective therapy for treating vasomotor symptoms. Other options include Selective Serotonin Reuptake Inhibitors (SSRIs), selective noradrenergic reuptake inhibitors (SNRIs), gabapentin and additional medications. Sleep: Sleep disturbances may be managed by implementing good sleep hygiene principles, sleeping in a cool room, limiting fluids a few hours before bedtime, no caffeine before bed, taking a cool shower/bath before bedtime, and use of natural fiber sheets. Another important sleep recommendation is to shut off electronic devices a few hours before bedtime to enhance the release of melatonin. If people cannot live without their electronic devices, try using blue light screen blockers or goggles to reduce exposure from these devices. Hormone replacement therapy The North American Menopause Society recommends taking an individualized approach to HRT. This means assessing a woman’s risk/benefit profile. Rick factors, include but are not limited to, a woman’s age, history of breast cancer, heart disease, blood clots, stroke, hysterectomy status, and whether or not she smokes. According to the Mayo Clinic, newer research exists which shows there is some scientific evidence to suggest HRT may be a good choice for certain menopausal women, depending on their risk factors. HRT may help with bone health and it may possibly be neuroprotective. HRT may improve some menopausal symptoms that can aggravate MS symptoms (eg fatigue, poor sleep, low libido, mood disorders). One’s primary care provider and gynecologist/women’s health care specialist need to consider risks/benefits with respect to the most current HRT research when advising a woman about treatment options. The goal is to develop a mutually agreed upon therapy plan based on best practice guidelines. When considering HRT, the health care provider should start with lowest dose to be taken for the least amount of time to achieve the desired outcomes. The woman should also follow up for regular health care exams while receiving HRT. Important to understand that utilization of HRT is not for everyone and must be determined on an individual basis. Directions for future research 1. Impact of hormone changes with menopause on MS disease course. 2. Role of HRT on MS disease course. 3. Larger studies to determine if HRT can be safely used to reduce the symptoms of menopause and MS. 4. If declining levels of estrogen adversely affect the pace of neurodegeneration. 5. Longitudinal placebo-controlled trials of effects of HRT in women who start perimenopause compared to those who start post-menopausal. 6. Neuroimaging studies to identify neurodegenerative changes in women, with MS, who are transitioning through menopause. 7. A better understanding of MS and menopause to more accurately evaluate therapeutic MS disease modifying therapy interventions. 8. Larger studies evaluating race as a variable in menopause and MS research and interventions Conclusion Given an increasing prevalence of women being diagnosed with MS and a median age of women living with MS that are close to menopausal age, future studies should be directed towards investigating whether modifiable changes at menopause can positively impact the future direction of the disease and enhance quality of life for all those affected by MS. See below for references of research used in this article. Here is a video of Bobbie Severson speaking about her work References i Brunk D. Clinical Neurology News, June 7, 2015 ii Gold EB, Sybil L, Crawford NE, et al. American Journal of Epidemiology July 2013; Vol 178(1); 70-83 iii Bove R, Healy BC, Musallam A, Glanz BI, De Jager, PL, Chitnis T. Multiple Sclerosis Journal 2016, Vol 22(7), 935-943 vi Bove R, Chitnis R, Houtchens M. J Neurol 2014; 261:1257-1268 and Gold EB, Bromberger J, Crawford S, et al. Am J Epidemiol 2001; 153: 865-87 v Rocca WA, Grossardt BR and Shuster LT. Brain Res 2011; 1379: 188-198. vi Bove R, et al; J Neurol. 2014; 261 (7): 1257-68 vii Bove R, Healy BC, Musallam A, Glanz BI, De Jager PL, Chitnis T. Multiple Sclerosis Journal 2016, Vol 22(7), 935-943 viii Holmquist P, Wallberg M, Hammar M, et al. Maturitas 2006 ; 54 :149-153; Smith, R and Studd JW. J Royal Soc Med 1992; 85:612-613; Wundes A, Amtmann D, Brown T, et al. Int J MS Care 2011; 13: 47
This week we bring you a special feature on Menopause and MS from Bobbie Severson, ARNP from the MS Centre at the Swedish Neuroscience Institute in Seattle, Washington, USA. We have divided it into two parts for ease of reading, click on the link at the end of the piece for Part 2. Multiple sclerosis (MS) is an autoimmune, neuroinflammatory and neurodegenerative disease of the central nervous system that affects many more women than men. The prevalence of MS is about 3 times higher in women than men. The onset of MS typically occurs during early adulthood, a woman’s reproductive years, however many women living with MS are also of perimenopausal and menopause age. About 50% of women with MS are post-menopausal (i). The purpose of this article is to: Review the stages of menopause. Identify symptoms of menopause that may adversely impact MS. List treatment interventions for symptom management of menopause and MS. Identify a direction for future research. There is frequent overlap between MS and menopause symptoms and comorbidities such as bladder dysfunction, depression, cognitive impairment, sexual dysfunction, fatigue, and sleep disturbances. In addition, some MS symptoms may be aggravated by perimenopausal changes such as hot flashes and insomnia. A better understanding of MS and menopause is necessary, so we can more effectively assess, implement and evaluate therapeutic interventions in treating either, or both, disorders. Often, the MS health care specialist is the first provider to become aware of a woman’s symptoms.He/she may then assume a primary or secondary role in monitoring and managing a woman’s MS and menopause symptoms. Cross sectional studies have indicated the age of onset of menopause begins around a woman’s mid-40s. However, menopause can also occur earlier in a woman’s life either surgically (removal of ovaries) or chemically (from chemotherapeutic agents). The median age of menopause among white women of industrialized countries is 50-52 years. These ranges may vary by race, sociodemographic, and lifestyle factors (ii). The majority of women naturally transition into menopause at about 51 years of age in the United States. The most common age range is 40-58 years according to the North American Menopause Society. Little is known about sex specific changes in the MS disease course around the age of 50, which may represent a significant biological transition period for reproductive aging. Decline in ovarian estradiol production may be the most prominent of the changes. This transition can contribute to a variety of issues such as vasomotor symptoms (hot flashes, night sweats), sleep impairment, sexual dysfunction (vaginal dryness, atrophic vaginitis, low libido), emotional disorders (depression, anxiety, irritability) and cognitive changes (impaired memory and concentration). Other symptoms may include bladder impairment, dizziness, headaches, and muscle aches. Some of these problems can overlap with MS symptoms. The questions then become: How does menopause affect MS? Can symptoms of MS be incorrectly attributed to menopause? The evolving research of menopause occurs at a time when there is uncertainty about whether a definitive relationship exists between the menopausal phases of life and MS (iii). 1) Stages of Menopause (iv) The menopausal transition involves a series of physiological changes associated with reproductive senescence in women, divided into a series of stages. Perimenopause or menopausal transition period: Is the time leading up to menopause. During perimenopause, a woman’s ovaries begin producing less of the hormones estrogen and progesterone. Menopause: Signifies the permanent cessation of ovarian function resulting from loss of ovarian follicular activity as well as changes in hypothalamic regulation and is defined as the final menstrual period, after which no menses occur during a 12 month interval. Natural menopause is affected by genes, metabolism, behavioral and environmental factors, and reproductive history. Symptoms of menopause that may adversely impact MS. MS affects a number of systems which include, but are not limited to, urogenital, cognitive, visual, and psychological function. It can also contribute to fatigue, sleep impairment, headaches, and pain. All these symptoms can also be experienced during a woman’s menopause transition. However, they might be incorrectly attributed to MS, or missed, if they are triggered or intensified by menopause. For example, menopause can cause hot flushes which might then contribute to an increase in pre-existing MS fatigue, sleep impairment, dysesthesias, Uhthoff’s phenomenon and pseudo MS exacerbations. Declines in estradiol at menopause may be linked with cognitive decline (v). Due to the symbiotic relationship between menopause and MS, MS health care providers will need to determine whether a woman’s symptoms are caused by menopause and/or MS. Some studies show menopause may be linked to worsening MS symptoms. However, there is additional research that does not support this (vi). Dr. Riley Bove is a neurologist and researcher providing comprehensive care for patients with MS, including women who are transitioning into menopause. She is also a member of the American Academy of Neurology and the Consortium of Multiple Sclerosis Centers). According to Dr. R Bove, the impact of menopause on MS disease course is unknown and “menopause is highly variable for all women and depends on the individual”. A study by Dr. Bove explored the changes in disability after menopause in a longitudinal multiple sclerosis cohort. The study concluded there was a possible worsening of MS disability after menopause. It was determined that larger cohorts are required (vii). In 2 small cross-sectional studies, 40-54% of women reported a worsening of MS symptoms after menopause. But menopause was not reported to affect MS in a third, larger study (viii). >> Treatment Interventions Part 2 of Menopause and MS
Have your say The HSE Disability Service in CHO5 (Carlow / Kilkenny/ Wexford/ Waterford and South Tipperary) are hoping to work with Genio Trust and their Service Reform Fund to design alternative Respite Care for those living with a disability and their families. The HSE Disability Service in CH05 would very much like you to contribute to this survey which is totally confidential and conducted by an independent advisor. Please feel free to send the email on to anyone else who may be interested in completing the survey. The survey will take 5 minutes to complete. Thank you for taking the time to answer these 11 short questions.
Young adults lived experiences and perceptions of parental MS and how it impacts on them. Niall Moloney, 4th year Occupational Student, NUI Galway is looking for participants to engage in a research study. Who can participate? The participants for this particular study are children of people with MS who are aged between 18 and 30 years. Aim of study The study seeks to explore young adults lived experiences and perceptions of parental multiple sclerosis and how it impacted and/or impacts on them. It is anticipated that this study will inform service provision regarding areas in which young adults who experience parental MS may require support. What do I have to do? Young adult participants aged between 18-30 years, will be asked to engage in short individual interviews and complete a demographic questionnaire. We are asking if you have children within this age group who might be interested in participating in this project and if so, would you pass on this information. How to get involved If they are interested please contact Niall directly at email@example.com Further reading Download participants invitation Download participants Information sheet Download summary of project Download letter from research supervisor Download Interview schedule
Where do you get your MS treatment information? This week in her first blog as part of the renewed MS and Me writing team, Joan Jordan tackles medication, DMTs, clinical trials and decision-making. Read on for a clear description of how Joan made her DMT decisions…. I was a bit late to board the DMT (Disease Modifying Therapy) train. Although I had experienced symptoms of MS since my early twenties, I did not actually get diagnosed until I was 36. About six months later, I signed up for a clinical trial. For a few years, I was not actually sure which medication/DMT I was on because it was a double-blinded trial. This means that neither I nor my doctor knew which of the two drugs I was taking was the placebo (dummy) and which one was active. I found the whole process of participating in a clinical trial fascinating and it inspired me to want to learn more about how medications are developed and monitored. While I was on the clinical trial, I experienced severe side effects. I felt like I was losing a day a week to “flu-like” symptoms. Can you imagine having the flu for one seventh of your life? That’s ten years of feeling dreadful if I reached the average life expectancy! I began to weigh up the advantages of taking medication for my MS at all. How did I know it was working? Were the “flu-like” symptoms worth not having relapses? I also felt terribly guilty about not being able to do my daily tasks like caring for my children or not being productive at work when I was experiencing the dreaded “flu-like” symptoms. I don’t regret taking part in the clinical trial. I feel it gave me a bit of time to get over the shock of my MS diagnosis and to get a clear picture of what treatment options were available to me. I also felt that I was contributing, in my own way, towards the process of getting new medication on the market for people living with MS. I learned what a Disease Modifying Therapy meant. DMTs are NOT a cure for MS but could reduce how many relapses I had and their severity. DMTs can also slow down the damage caused by relapsing MS that builds up over time. Because I did not respond well to the first DMT I took, I was then moved onto a second line therapy. I had to have a ‘wash-out’ period where the old medication left my system. During this time, I had my first major relapse. I guess I had the answer to the question about the “flu-like” symptoms being worth it. Choosing my next DMT was difficult and I would encourage anyone considering starting or changing, to do their homework and investigate which one would suit you and your lifestyle best. Don’t let yourself be rushed into a decision. At the end of the day it’s your health you are deciding about. How long would you take to choose a new car? I have much less side effects on the second DMT I tried. I know it’s working because I have no evidence of disease activity in my annual MRI. I make sure to read my patient information leaflet and get my bloods checked regularly to monitor how my liver is functioning. When considering a DMT it is vital to get your facts from a trusted source and make an informed decision with your neurologist.
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