MS Ireland
Informing, Supporting and Caring for the MS Community
Decision-making is a challenge for the cognitively impaired. Decisions can be made that are illogical, unrealistic and harmful. To assist your loved one in the process, write out the pros and cons to make the situation more visual. Confer with a knowledgeable source such as a solicitor, doctor, neutral observer, or relative if you need to. If there are important decisions to be made, such as life planning or financial decisions, try to address these issues when cognitive decline is first noticed and before decision-making is significantly impaired.
In December 2015, the Government passed the Assisted Decision-Making (Capacity) Act. This new Act, when commenced, will have significant implications for people who are caring for someone whose capacity to make decisions may be impaired. The Act provides a statutory framework for individuals who have impaired capacity or may have impaired capacity in the future to make legally-binding agreements to be assisted and supported in making decisions about their welfare and their property and affairs. More information is available here
Altered mood states are considered neuropsychiatric rather than cognitive deficits. Neuropsychiatric changes can include mood swings, depression, irritability, anxiety, inappropriate and excessive cheerfulness (euphoria) agitation, apathy, and disinhibition.
Mood swings can fluctuate quickly between anger or rage and normal behaviour. A separate mood disorder termed pseudo-bulbar affect, also known as Involuntary Emotional Expressive Disorder (IEED), is characterised by uncontrollable episodes of laughing and/or crying, and affects 1 in 10 people with MS. These episodes are not necessarily associated with the person’s underlying emotion, and can be inappropriate to the external circumstance.
A minor stimulus, such as watching a television commercial or receiving a gift, can cause uncontrolled tears for example, while learning of a death can bring on uncontrolled laughter. Euphoria and disinhibition (inappropriate sexual talk or behaviour, loss of “social graces”) can occur in people with advanced MS. Treatment for altered mood states may involve medications, and successful management is possible. Ask a neurologist, mental health professional, or an MS nurse specialist about current treatments.
Consciousness level refers to how awake and alert a person is. Levels of consciousness include: alert, confused, drowsy, and unresponsive. Situations that might alter consciousness are medications (for example pain medications), infection, fluid and nutrition intake, or the underlying disease process. Infection, such as aspiration pneumonia, can worsen respiratory effort and affect level of consciousness.
Poor nutrition and hydration can also lead to states of altered consciousness. Persistent vegetative state (unresponsiveness with no brain function beyond bodily activities such as heartbeat) can occur in multiple sclerosis. Care of these individuals is focused on maintaining dignity and hygiene. Life expectancy is 2 to 5 years.
They say of men and doctors, we don’t go if it’s not bleeding, broken and still gets up. Trevis Gleason went to the doctor… Last weekend, with the changing of the clocks and 60 minutes added to our night, The MS Society of the UK posted a series of blogs under the header “A Sextra Hour”. In our MS & Me Blog of last week, Emma took us into the EMSP bedroom (not to mention her own) and talked about what nice Irish women “aren’t supposed to” talk about. I suppose it’s my turn to turn down the duvet on issues men with multiple sclerosis might face in the bedroom. It’s a serious subject, but let’s remember that sex is fun (and can even be funny), so I may poke a bit of fun as we talk about this topic. Age or MS? It’s not uncommon for people with multiple sclerosis to ask ourselves if something going on with us is, indeed, our MS or if it’s just aging. Men’s sex drive - both mental and physical – can decrease with age. It is important to remember that. Saying that, however, I know of men better than a decade older than me with satisfying sex lives so don’t put it all down to age. The physical function of obtaining and maintaining an erection might be first on the list of considerations for the lads, but sex is more than inserting tab A into slot B, as if you’re assembling Scandinavian furniture. Besides, we all know there are tablets, injections and “appliances” that can help with that arena. The reasons behind such disfunction can be complex; from demyelination of nerves leading from big brain to ‘little brain’ to emotional and physiological issues we heap on ourselves when it comes to performance. It’s important you talk to your doctor, as well as your partner, about concerns in the ‘mechanics’ of sexuality. Feeling all the Feels Loss of sensation in general or specific regions of the body can also have negative effect on our sex lives. Some parts of my body are hyper-sensitive, others have lost some (or all) level of ability to feel touch. But as important as feeling the physical is important in sex, the emotional connection is important as well. Men don’t always get that… do we, ladies? All the parts Every part of our body and its systems can be touched by multiple sclerosis. It’s not just the sex parts that can lead to difficulty between the sheets. If legs make it difficult to walk, flipping and flopping around the bed like we may have when we were younger could be difficult if not impossible. Weak arms can also make sexual positioning a challenge There’s an old joke that God must have been a civil engineer because no one else would put a waste disposal pipeline next to a recreational area. Bladder and bowel issues with MS can have a rather embarrassing result when it comes to sex. Your Massive Sex Organ Here’s the thing, there are work arounds for many MS sexual issues, you just have to use your head. I can’t do much of my everyday living the way I used to do it. Why then would I think that I should expect the sexual part of my life to go on the same way? This is where communication comes into play. We must talk about what’s working and what’s not. We can have frank (and fun!) conversations about how to give and receive sexual pleasure with our partners. A chat with your MS doctor or nurse might seem embarrassing but, trust me, it’s better than giving up such an important and fulfilling part of a relationship. They say that our biggest sex organ is our brain. Use it, men (and women), to its fullest advantage and your life in the bedroom (or wherever it is you might fancy a ride) could be great again… different, perhaps, but still great. Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning book, Chef Interrupted, is in the shops now. Follow him via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com
Fund for students with disabilities to be extended to part-time students The operation of a €10m fund for college students with disabilities is to be reformed to ensure more people benefit and with fewer delays. The fund for students with disabilities exists to financially assist students with disabilities while they are in education. Students apply to the fund via the Disability Support Service in their college. The fund can be used for: Assistive technology equipment and support Personal and Academic Support Transport To date, this fund has only been available to full-time students, however one of the reforms recommended by a recent review was that it be extended to part-time students also. You can read more about financial supports available to students on page 9 of the latest issue of MS News
This week Emma Rogan feels a little bit… awkward. No one who walked into the room left without having some of their ideas changed to a more sex-positive way. It was after lunch, it wasn’t in the dark and they didn’t whisper when they spoke about positions, difficulties climaxing, drugs that help or toys that work about lubrication, orgasmic spinal centres not getting enough stimulation and vacuum device to help with erectile dysfunction in loud voices and in public! They were talking about sex and people with MS. “For most people, sexuality and its expression are a natural and important component of self-concept, emotional wellbeing and overall quality of life” World Association of Sexology Sex is a core part of being a human yet in this society it’s a topic so weighed down by disgust and shame that having a sex-positive discussion is almost impossible. Add to this living with a nerve-signal, body-altering condition and we’re all silent. I have scars in/on my brain and spine and damage to my nerves causing loss of feeling. I’ve not always been able to feel the touch of a lover and I’ve faked so many orgasms I can’t count. I’ve had great sex, fall-asleep sex and everything in-between. Sex only got better when I was honest about whom and what turned me on. There are thousands of women with MS and their sex-partners having unfulfilling sex lives for all sorts of reasons. Maybe it’s because of the dreaded T word- talking. Maybe being diagnosed with MS has severely impacted how we feel about our body and our personhood has been seriously harmed. Maybe it’s a traumatic experience in the past that has damaged our bodily integrity. Maybe when we’re in front of our neurologist our sex life not on the priority list. If we value your sex life, we must talk about it. Otherwise, we leave the clinic without a referral to a therapist or having a conversation with the MS nurse or a getting prescription for something useful or tips on what would work for us. We’re complicated creatures and if having MS is having an impact on how we feel about ourselves, we need to deal with it. If there are issues with our relationships, we need to talk with our partner and consider seeing a couple counsellor. If it’s something physical (loss of erogenous/clitoral sensation) speak to your neurologist or an urologist. Ask someone and learn to talk about it so when you do talk with your girlfriend or boyfriend, wife or husband or with someone you trust, you start getting sexual healing. MS Ireland has a trained psychosexual therapist on their staff, Mary Leonard (maryl@ms-society.ie) and she’s available if you need her help. Get in contact with an accredited therapist. Imagine living in an Irish society free of repressive attitudes, where people are decent to one another, disagree and still get on and where there’s a celebration of what it means to be a living, breathing human being. Imagine sex being a routine, part of daily life without competition and not about performance. Being with someone who really turns you on, you can talk to and who makes you happy is worth talking about. Sex doesn’t need to be mind-blowingly amazing every time but pleasurable, yes. The people from earlier were Charalampos Konstantinidis and Moira Tzitzika at the EMSP Spring Conference in Athens, 2017. I’m not a Greek goddess no matter how amazing I think I am. I’m an ordinary woman with needs and desires and I know what and who makes me feel good. Learning about and understanding the issues I have is a step towards me learning how to ‘overcome obstacles effectively’ (Moira Tzitzika). Having MS has not diminished my desire to have a healthy, sex-positive life and if talking about it helps, being awkward is something I know I can overcome. I’m on Twitter @emmadragon a lot and am eager to chat about this and other MS topics. Moira Tzitzika MSc, BTEC, EFT, ΕCPS, MSMC Charalampos Konstantinidis, MD, FEBU, FECSM MS Trust Sexuality and MS: A Guide for Women
Over the coming months the MS Ireland Western Regional Office are hoping to run a 'Mindfulness Course' for people with MS. However, we would like to gauge the level of interest in such a course before we book a qualified facilitator. If you are interested please click on the email below and let the team know what day/time/location that would suit you best and send it back to us here in the Western Regional Office western@ms-society.ie at your convenience.
Thursday, 26th October @ 6pm (Irish Time) Dr. Nonnie McNicholas, St Vincent’s University Hospital, will provide an update for people with MS and their healthcare professionals on the hot topics from ECTRIMS covering the main updates and research themes from the conference. Tune in on Thursday, 26th October at 6pm Irish Time. Click the link below and use the following password ThinkMS to login. http://esc.eventresult.com/default.asp?EventCode=Novartis&RoomCode=Novartis
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04 November 2017: Ongoing Physiotherapist led exercises for people with MS.
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