People with MS and their families can be robbed of many things as they live with MS, including physical abilities, independence, financial earning power, emotional ties, and options for the future. It can be frightening to consider all the changes that can happen over time. Losses that may need to be anticipated include:
• Loss of income can occur because of care giving duties and changes in family roles. In addition to probable loss of income by the person with MS, care giving can also result in lost income as more and more time is required at home. This can cause a significant financial burden on families. Being aware of what financial supports are available is very important
• Loss of time to care for one’s own needs. Family Care Givers providing 24-hour care often cut back on making time to take care of themselves.
• Reduction in friends and family being involved in yours and your loved one’s life. There are often two types of people in our life - individuals who are very important to us, and those who are more acquaintances. The acquaintances may drop out of your life. But if you can focus on the people most important to you, they are likely to stay around and be supportive.
• Changes in your partnership with your loved one. It may be that he or she finds it more and more difficult to communicate. Ability to speak and cognition may become impaired. Intimacy may fade in many ways, from companionship and conversation to the loss of sexual intimacy. Finding joy in the small things of life, and spending time to nourish things that both of you care about, may become increasingly important.
• Physical mobility often becomes impaired to the point that moving on one’s own becomes impossible. When this happens, total care and assistance can be needed. Total dependence impacts caregiver independence significantly and requires planning, should this occur.
Because of all of the challenges and changes that can come with MS, anticipating ahead and being prepared for challenges that might come in the future are extremely important. It can enable your family to make decisions in a much more deliberate and thoughtful fashion, rather than being caught off -guard and having to make decisions in the midst of crisis.
If we sit down as a family to talk about possible care needs in the future, what should we discuss? What would our goal be for this conversation?
Practical considerations such as costs of care, transportation for treatment, necessary equipment and the need for outside help should be discussed.
What is known about all of these issues?
The emotional and social needs of each family member should be discussed, and it is important to speak honestly about personal limits and the burden of stress involved in caring for someone who is seriously and chronically ill.
You want to tap into the strengths and abilities of all your family members. What services do you need to know more about? Who can do some research on the internet? Who can explore financial eligibility for some community services? Who can find out more about equipment and assistive technology that might help make things easier? Who can review legal and financial documents?
Discuss together what needs to be done and prioritise a “to-do” list. Sometimes this planning conversation takes place in one long meeting; other times it involves several discussions. The important thing is to develop a plan for how to go forward, and see that the plan is written and distributed to all involved. Keep in touch with each other, so that the best possible care can be provided.
Can a person with MS donate tissue or organs?
Anyone can donate organs and tissue. For people with MS, these donations will be used for research rather than for transplants. For those considering organ and/or body donations, planning ahead is essential. Brain tissue must be prepared within hours after death to be of use in research. Further information is available here and here.
Is it recommended that funeral arrangements be discussed in advance?
The more details that can be discussed, the easier it will be to administer funeral arrangements according to stated wishes. This also helps to decrease family stress at the time of death.
Some of the decisions that can be made in advance include:
• the type of service desired
• the type of casket or urn
• the type of disposition of the body that is preferred (burial,
• cremation, etc.)
• details related to the service (funeral service vs. memorial service, clothing for burial, make up, hair, viewing or not, open or closed casket)
MS is such an expensive disease. Are there things I can explore right now that could help our family financially?
Maximise your income tax deductions. You probably already know that you can deduct out-of-pocket medical expenses for doctors, hospitals, therapies, etc. if these expenses exceed a certain percentage of your income. However, you may not realise that other costs related to living with a chronic medical condition, such as room and board for a personal care assistant, wheelchair repairs, modifications to your home for medical reasons, wages for personal care services, etc. might also qualify as medical deductions.
It is important that you consult with a qualified tax professional to be sure you are holding on to as much income as you can.
Why is it important to have legal documents regarding future health care decisions for your loved one? It is important that someone is authorised to make health care decisions on behalf of your loved one, should the time come when they are unable to make these decisions. Since some of these decisions are apt to be life-or-death decisions, you want to make sure that enough information has been shared so that decisions reflect your loved one’s wishes.
What are the different types of advance directives? Advance directives help people achieve a sense of control over their health care in the event they become unable to make a decision for themselves. The most common directives are:
What is a Living will? A living will spells out a person’s wishes about medical care in case he or she is physically unable to state those wishes. It addresses specific medical situations such as the placement of a feeding tube or the use of mechanical ventilation if respiration fails. The living will spells out what the person wants to have happen in those situations. Many states only allow a living will to be utilised when a person is terminally ill, in a coma, or in a persistent vegetative state. Sometimes this document is referred to as an advance medical directive.
What is a Health care proxy? This directive allows a person to name a personal representative or agent who will make medical decisions on his/her behalf, should personal decision making become impaired. It is critical that this representative understand the values, beliefs, and desires of the person being represented, and that any decision he/she makes reflects the person’s wishes as outlined in their living will. Health care proxy is sometimes called a medical power of attorney.
• Do Not Resuscitate Order. This document instructs medical personnel not to use CPR (cardiopulmonary resuscitation) if the person’s heart stops beating. It is important to review these documents regularly, and execute new documents when wishes have changed. Also, as long as the person is mentally able, these directives can be revoked at any time.
Is it important for me to have these types of legal documents as well? Everyone, even those in good health, should prepare these documents because we never know when we might become unable to express our wishes. It is also good to keep in mind that if one does not choose an agent to make medical decisions, then a court will do so.
Do we need wills? Everyone should have a will. You and your loved one should have a current will drawn up by a solicitor and be sure that you keep it up to date.
A will allows you to make your own choices. It also provides an opportunity for wishes to be stated with regard to guardianship of minor children and management of their assets until they are old enough to assume control.
If these plans are not made court systems can make this extremely expensive.
Many people have never hired a solicitor or thought they needed one. But a long-term illness or disability can change lives dramatically, and it is helpful to have expert advice to avoid possible devastating effects on you or your family. Your needs will determine what kind of solicitor will be best. Perhaps a solicitor who practices general law will be able to do everything that’s required. But if the financial situation is more complicated, you may need a solicitor with experience in estate planning to help you sort through income, property, bank accounts, and other assets.
If you need help finding a solicitor, ask trusted friends and associates for recommendations. Other professionals like bankers, accountants, and insurance agents may also have suggestions. The Irish Law Society have a list of registered practitioners which may help you find a solicitor with expertise in the area you need. (Look in the Yellow Pages under “Solicitors Referral & Information”.)
Some Of The Services A Solicitor Can Help You With:
• Wills: Everyone over age 18 should have a will. Most solicitors in general practice can draw up a simple will. If a will was written long ago, review and update it if necessary. Appoint an executor.
• Estate planning: If there are large assets or there are complicated business or legal considerations, consult an solicitor who specialises in estate planning and is familiar with the legislation concerning estates and taxes.
• Durable Power of Attorney: This legal document, signed by a competent person, gives another person the authority to handle some or all of the first person’s affairs. It continues to operate even if the person who signs it becomes incapacitated.
• Durable Power of Attorney for Health Care: This legal document allows another person to make medical decisions for someone who has lost the ability to make their own decisions. It can include detailed specifics about what should be done in the way of treatment and life-sustaining supports. It allows a trusted friend or family member to direct the GP according to the patient’s wishes. The person who signs the durable power can change or revoke it at any time. Everyone over age 18 should have a durable power of attorney that includes health care.
• Advance Directives: Sometimes called living wills, these allow the person to give instructions about medical treatments that he does or doesn’t want if he becomes terminally ill and is unable to express his wishes. Hospitals and nursing homes are required by law to inform a person about advance directives before he is admitted. However, he is not required to sign an advance directive in order to be admitted.
• Guardian: The court appoints a guardian to control and manage another person’s affairs and/or property. Guardianship is expensive and time consuming and is rarely necessary if other procedures like a durable power of attorney are in place.
On this Valentine’s Day when many of us choose to celebrate romantic love, Christina McDonald and Niall McGahon give us their take on MS and Romance. Christina We see it all around us. On the streets, in movies and in songs, love and romance. They are everyone’s desire at some point. I was diagnosed at 26 in the common age range for an MS diagnosis (20s-40s). These are also the years seen as someone’s prime years- in college, looking for love, perhaps settling in with someone, building a career, getting married and all the typical life-steps. MS at times has changed how I view myself as a woman. Questions constantly loom such as “am I a burden for my partner?” or “am I still attractive when my symptoms peak?” or “have I embarrassed you in public? “Am I still fun to be around when my fatigue is bad? Sometimes I wish I could be more spontaneous and that I had more energy like I used to before MS. It can be difficult to maintain a romantic relationship when you’re living with MS but with two people who compromise and understand the difficulties that may arise from MS, they can plan around what suits their needs and keep the spark alight. The thing is, I am not my disease, I am not MS. While those questions might go through my mind, I know that when my partner looks at me, she still sees the person that she fell in love with and not the condition. Although we might not go out for date nights as much as we used to, we still make a joint effort in bringing a date night to us. This includes nights in with a movie and takeaway - Netflix and chilling out. We tend to do things earlier so that I have more energy. Compromise is key for myself and my partner when it comes to MS and romance. I see myself as lucky because I had found “the one” before my diagnosis so I didn’t have to worry about how to tell someone I’m dating about my condition. My partner has been with me every step of the way. Niall’s Perspective I think it’s fair to be said most men don’t live up to the Hollywood romance and the way it’s sometimes portrayed but god do we try our best! By the time of my diagnosis at the age of 34, I had met my beautiful wife and we were 4 years married. We now have a beautiful son and another on the way. Like Christina, I never had to go through the process of having to tell someone about my condition. I thank god every day for that because without my wife going through this process with me, I don’t think I would be as strong as I am now. One of the definitions I found for Romance was: “feeling of mystery, excitement, and remoteness from everyday life” Quite apt for both MS and romance with a loved one. The illness fills your head full of mystery about the future and sometimes pulls you back and isolates you into a remote-ness from your everyday life. MS gives you a kick in the nuts, excuse the pun, from an in-timacy perspective. I’ve found myself questioning myself on countless occasions “Jesus you’re useless…”, “how embarrassing…” and as time progresses this can eat at you and sometimes it’s easier not to try. Thankfully I get a kick up the ass and get pulled out of whatever dark room I may have entered. All because the person who, 13 years ago filled my head full of mystery of what could be, of excitement of what was to come, took me to a remote place that was only her and I. To me romance is not necessarily about the big gestures; it may have been that a few years ago. Sometimes the smallest of things can be the most romantic. The spontaneous back and foot rub, the dinner made or simply the holding of hands. These all may seem the easiest for most. However when you have little feeling in your dominant hand these tasks become even more challenging but more enjoyable and appreciated when they are done. Christina is right, Netflix and chilling on our own sofa is a bloody good date night too! My perspective on life with MS is about team work. Like Christina, we are not MS, it doesn’t define us. We have the full understanding that the love that we first found all those years ago is not going to be broken by MS, we are only going to get stronger. Ro-mance is not dead, it has just taken on a different form and that’s ok because it will never disappear.
Research Request What is Parental self-efficacy? Parental self-efficacy describes the beliefs one has of their ability to manage and perform the role of parenting successfully. Who is carrying out this study? Rachel Mc Laughlin is a 4th-year Occupational Therapy student in NUI Galway. This research is being completed with a final year university project. This study will run between January and April, 2019. Aim of study Your participation in this study will add to knowledge on how MS can affect parents, specifically through levels of fatigue and parental self-efficacy. It is hoped that this information will lead to an improvement in health services in the future. Who can participate A parent with MS with a child/children between 2-18 years old? If you are interested in participating in a study looking at the impact of fatigue on parenting please read the information sheet to find out more about this study and if you are eligible to participate Get in touch Contact the researcher at email@example.com who will happily answer any questions that you may have.
We are so excited to announce that we have teamed up with Emma Larkin, a jewellery designer who is based in Galway. Emma has designed these small little kisses to wear on your lovely lobes. So now you can show your support and help us Kiss Goodbye to MS! Emma is supporting our Kiss Goodbye to MS campaign as MS is a condition that she has been surrounded by for her whole life. Emma’s mum was diagnosed with MS before she was born. “I am aware of the good and the bad days that MS can bring but I think trying to have a positive attitude, can go a long way. My mum has been a great support in my life so it means a lot for me to take part in this Kiss Goodbye MS campaign”. Emma has recently started her own jewellery business and her work is on sale both online and in selected shops. You can check out more of Emma’s amazing designs here. So what are you waiting for? These stunning Kiss Goodbye to MS lip earrings are subtle and add a touch of glamour to your everyday! So head to our shop or call one of our team on 01 6781620 to place your order today! Our earrings are priced at €11.00 including post and packaging. 50% of the cost will do directly to Kiss Goodbye to MS.
Research Request We have been approached by a postgraduate student of psychology at Trinity College who is researching whether young people aged 14 -18 years who live with chronic pain have different worries and beliefs about worry, from their counterparts who do not live with chronic pain. Aim of study This study is the first step in understanding beliefs about pain and about worry in a sample of adolescents, who experience chronic pain, and to compare and contrast this with a sample of adolescents who do not experience pain. Get in touch If this is a study you would like to take part in, please email Aoife firstname.lastname@example.org
To mark the International Day of Women and Girls in Science on 11th February, this week our MS and Me blogger Ciara O’Meara highlights the women of science and innovation who have changed the world for us all. The importance of science is too great to ever be underestimated or underappreciated. Without developments and continued progress and innovation in the world of science, we would not have the knowledge and information to understand the behaviour of the world around us. My own thinking on science has evolved dramatically throughout my own life journey. From a naïve and frustrated Leaving Certificate Chemistry student, I am now an avid subscriber to scientific research based journals and a research contributor. My initial train of thought on this topic ran something like this: Marie Curie- The first person to win a Nobel Prize in two different fields for her ground breaking work on radioactivity, Leaving Certificate Chemistry- the fear of remembering the difference between organic and inorganic compounds and that dreaded periodic table Florence Nightingale- the founder of modern nursing and instigator of professional training standards and better health outcomes Fourth Year Bachelors Degree Nursing Research Proposal- literature reviews were the bane of my life and this concept of methodology and sample size was seriously impacting on my RAG week preparations Dr. Rita Levi- Montalcini- Nobel Prize Recipient for her work on neurobiology. Dr. Montalcini also carried out research in conjunction with the National MS Society on identifying proteins that help nerve cells grow and stay healthy. The pride and sense of achievement and empowerment when I handed in my own Masters Research Dissertation on ‘Parent’s Experiences of a Multiple Sclerosis Diagnosis in their young adult sons/daughters’. Science can no longer be considered a male-dominated area; women and girls have always had a critical role in scientific research and development. And continue to do so. The United Nations 2030 Agenda for Sustainable Development focuses on the importance of science, empowerment and gender equality to achieve their identified goals. Given that less than 30% of researchers worldwide are women and in tandem with the UN’s goals for sustainable development, The United Nations General Assembly declared February 11th as the International Day of Women and Girls in Science. Women are more at risk of developing Multiple Sclerosis in comparison to our male counterparts. Given this female dominance, it seems only right to give credit to some of the women and girls who have contributed to recent scientific research and development in the field of MS. Maria Howard, MD at Harvard Medical School (2018), focused her research on pregnancy and MS. Given the diagnosis of MS in women of childbearing age, her research examined annual pregnancy rates between women with and without MS and also studied medical insurance claims made in terms of complications which occurred post pregnancy. Her results were promising with an increase in women with MS becoming pregnant in comparison to a decrease in pregnancies among women without MS between 2006-2014. Medical claims relating to difficulties encountered post partum, i.e. birth complications, premature labours, were similar in statistics between women with and without MS. Her research, in tandem with other studies, strengthens the understanding among women that pregnancy does not necessarily affect the long term clinical course of MS and can be done so successfully with the support and monitoring of health care professionals, new treatments and continued research. The importance of early screening and recognition of cognitive impairments in people living with MS has been highlighted through the work of Dr Rosalind Kalb (2018). Her research has focused on the importance of establishing standard baseline assessments for cognition, appropriate treatments, increased awareness and education among healthcare professionals and stricter monitoring. This initial research by Dr Kalb on the importance of cognitive health and monitoring among people with MS has paved the way for future researchers to develop on this identified need and work on tools to address these issues Scientific Research in the field of MS is developing daily and women and girls are playing a more prominent role in their contribution to the field. There is an increase in female led research in the areas of drug therapy, complementary therapies for MS and an increase in the number of grants, funding and research scholarships awarded to females. February 11th is one day to mark the role that women and girls play in the field of science, technology, engineering and mathematics. Let’s encourage, empower and support girls and women every other day of the year. #WomenInScience #WomenInResearch Check out these resources for further reading on scientists mentioned in the piece: Maria Howard’s Research on Pregnancy ttp://n.neurology.org/content/91/17/e1559 United Nations Homepage on International day of Women and Girls in Science http://www.un.org/en/events/women-and-girls-in-science-day/ Female Scientists that have changed the world https://www.globalcitizen.org/en/content/17-top-female-scientists-who-have-changed-the-worl/ Research on Cognitive Impairment and Recommendations for MS https://journals.sagepub.com/doi/10.1177/1352458518803785
11:00 - 12:00
10:00 - 13:00
11:00 - 13:00
North Dublin A...
12:00 - 13:00
North Dublin A...
11:00 - 12:00
10:30 - 11:30
13:15 - 14:00
18:00 - 19:00
14:30 - 15:00
11:30 - 12:30