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.
Internet services and supports for family carers Do you have 10 minutes to answer a few questions about internet services and supports for family carers? We know that a lot of family carers rely on the web for information, supports and socialising when unable to leave the house due to their caring responsibilities. The partners in National Carers Week would like to know a little bit more about how family carers use the internet supports available, and what supports aren't available but should be. The survey should take about 10 minutes and is completely anonymous. If you have any questions, email Zoe in Care Alliance Ireland (the organisation who coordintates the week) on firstname.lastname@example.org. Click here to take the survey: https://www.surveymonkey.com/r/NCW2019
This week we get to ‘listen in’ on a conversation between Grace Kavanagh and Keith Byrne. They’re talking about the good days and the bad days, the ups and downs of life with MS and life in general. What does a bad day feel like to you? Grace: Everyone’s MS is different and so is everyone’s version of ‘bad’ days. I have been diagnosed with MS for 13 years now. Over that time my version of ‘bad’ days has changed as my MS has progressed. To be honest at this stage I don’t even rate days as good or bad, I just go with it and do what I can. I think that there are different kinds of ‘bad’ days. There are days where my body just won’t cooperate and I barely have the energy to blink. For me there is not a huge difference between physically good and bad days as I always struggle with fatigue and mobility so I try not to focus too much on my physicality. The worst for me are days when I am emotionally exhausted or just cannot motivate myself to engage with the world around me. Keith: Everyday there are a couple of hours where I just have to zone out. I’m unapproachable, I’m cranky and I can barely string a sentence together. My brain feels like it needs to shut down and reload. This is something I’ve come to accept rather than fight against. I don’t know if accepting fatigue is the right approach to take, however, it holds me in good stead if I manage to have an impromptu nap every other evening. I see my brain as a battery and time-out helps it re-energise albeit briefly. What works for you on bad days? Grace: I’ve had a lot of therapy and mindfulness practice to try deal with the negative spiral that can go on in your head when things are not going too well. I have a number of “distraction techniques” (fancy way of saying I bury my head in the sand for a bit) that take my mind off the negatives. For example I spend time with my cat, he always makes me laugh. I enjoy mindful colouring and play games on my phone. I can vastly improve a bad day by accepting my limitations and adjusting my plans for the day accordingly. That may well mean watching TV in bed but giving myself permission to do so means I’m not feeling guilty all day on top of everything else. Now that is an easy option for me since I don’t have a job to go to or children to look after but Keith you have both of these - how do you cope when downing tools isn’t an option? Keith: I have to admit it’s rare that I can take time out to look after myself as I know I should when having a ‘bad’ day. Having a full-time job and a toddler at home doesn’t really allow for it. I’ve tried therapy and mindfulness too. I did find them beneficial but when fatigue really kicked in, I lost interest. Although I know it’s not possible for many people with MS, keeping myself as active as possible is the best way I find to tackle the bad days. The high I get from running really stands to me. It helps me think straight and de-stress. I’m at a stage in my life where stress is unavoidable but the endorphins triggered by running at least make it manageable. Easier said than done particularly when fatigue and multiple other symptoms have you wiped, however, I would recommend anything that gets the brain pumping as a way to tackle the bad days. Asking for help Grace: We are both lucky enough to have understanding partners who pick up the slack for us when we are struggling. Do you find it difficult to ask for help? Keith: In some ways I’m a very stereotypical man and don’t like asking for directions. When we’re driving somewhere I’m unfamiliar with I will always rely on my wife to have Google Maps open and direct the way without asking her directly. It’s the same with asking for help. Sometimes I need a steer in the right direction and she’s the one who provides it. Yet I would never say directly “I need help” even when it’s blatantly obvious! It is important that someone close to you has an understanding of how you are affected by MS especially as we are all affected by it in so many different ways. Advice/Suggestions: Grace: I find a gratitude diary can be helpful when I’m in a dark mood. Writing down 3 things I am grateful for reminds me that there are good things in my life. Talking to someone who understands and has MS has been a big help to me; we can empathise with each other and maybe even laugh when brain fog hits and we can’t remember what we were talking about. Listen to upbeat music or watch funny videos on the internet. I read a blog somewhere that suggested having an emergency ‘bad’ day kit. You could put in a copy of your favourite book, chocolate or some other treat, perhaps your favourite movie. If at all possible get out of bed and get dressed. Try to achieve one small thing in the day, it might make you feel better. What would you suggest as a survival kit for bad days Keith? Keith: Some really good points Grace. I also find writing very therapeutic and the best possible remedy for brain fog. The thesaurus is my friend when I know what I want to say but just can’t think of the word – this happens easily one hundred times a day. Also, being kind to yourself is very important especially when we’re having a tough time of it. I’d definitely have a playlist of my favourite songs for my ‘bad’ day kit and maybe a YouTube playlist of historical sporting moments. Actually, on that note, I think I’ll watch Ireland beat Italy in the USA ’94 World Cup. I wonder if Paul McGrath still has Roberto Baggio in his pocket :)
Living with a Long Term Health Condition Self-care group programme that teach practical health-related skills. This programme is for adults 18 years and over. It is suitable for you if you are: living with one or more long-term health conditions (For example stroke, diabetes, heart failure, asthma, COPD, arthritis, Multiple Sclerosis, muscular dystrophy, depression, arthritis, Crohn’s, Colitis) caring for someone with a long-term health condition, depression, intellectual disability or dementia feeling low, anxious, unhappy or depressed Instructors/Tutors are specially trained to facilitate the workshops. All have personal experience of living with a long-term physical or mental health condition. Cost: €20 for 6 sessions, course handbook and refreshments Waterford: Sacred Heart Family Resource Centre, Richardson’s Meadows, Kilcohan, Co Waterford. Starts: Thursday the 11th April from 11am-1.30pm for 6 weeks. Book a place by ringing Joan or Gillian on 051 306728 or via Eventbrite Wexford: South West Wexford Family resource Centre, New Ross, Co Wexford. Starts: Monday 29th April 7pm-9.30pm for 6 weeks. Book by ringing Lana or Denis on 086 8163772 or via Eventbrite Carlow: Bagnelstown Family Resource Centre, Bagnelstown, Co Carlow. Starts: Friday the 3rd May from 10.30am-1pm for 6 weeks. Book by ringing Lana or Denis on 086 8163772 or via Eventbrite Part funded by the Lottery Grant from South East Community Healthcare (HSE)
This week Rosie Farrell shares with us how she has learnt the art of listening to her body. Ah, those three little words. The uncompleted tasks and treasures of today hang on those words. Like a carrot on a stick, they lure me into the future by promising me what the now can't deliver. Tomorrow I will… They may just be three little words but to me they mean the world because within them they hold hope, hope that tomorrow the pain will be better, that I'll manage that walk, hope that I'll finish that painting I've been too sore to work on. Hope is my fuel and it drives me through the tough days. There are never any guarantees with MS. I always have several back-up plans because I can often wake from a fitful sleep to find my pain has soared or my mobility has plummeted. I think that's the hardest thing about this disease, trying to grasp its ever-changing mood and adapt when the goalposts change daily, hourly even. To future-proof myself and how erratic my MS can be, you will always find a wheelchair in my car boot, or if you see me without a walking stick, there is always one folded up in my handbag, because if there's one thing I don't want this disease to take any more of, it’s my freedom. There's a real stigma around using a wheelchair though, and it doesn't do us any favours. I don't know how many times I've heard the word wheelchair used in an almost-end-of-the-road context where MS in concerned. And when we use it that way I don’t think we realise how much that ostracises those of us using wheelchairs, as if our MS is this separate disease - the worst-case scenario. Because of this I ended up in one of the loneliest places of my life because I had no idea that someone with relapsing-remitting MS may need a wheelchair and that using one is often just the sign of an unlucky relapse - a badly placed spinal lesion in my case - and not always a sign of progression. A negative attitude towards the wheelchair is a society-wide issue really. Every time I find myself unable to enter a building, it feels like society screaming at me to go home, to not bother. But using a wheelchair is NOT the worst thing that MS can do to you and if accepting its help is the difference between leaving the house or not, if it means you can board your flight and start your holiday without extreme fatigue, is it not worth it? If I’ve learned one thing it’s that my wheelchair only ever enables me, it’s the badly designed country we live in and the stares of people who aren’t used to seeing enough wheelchairs in their daily lives for that exact reason that disables me. The chronic pain I’ve developed with this disease is what I struggle most with and I’m so tired of popping pills to keep the beast at bay. I plan my tomorrow always mindful of that. Even now I’m writing this from the couch in fits and bursts after a dreadful night’s sleep, willing my painkillers to kick in. But this is where plan D comes in, this is where I snuggle up on the sofa with my husband and our little dog Trixie and our day bursts to the brim with love. It can be easy to spiral when you have to cancel plans and it’s only natural to be disappointed. However, I try to find a few things to be grateful for in each day no matter how tough they are. In doing so it bathes the day in a more positive glow The art of seizing tomorrow lies in listening to your body. This is a skill and in the early days I found a symptom diary helped me learn my triggers. I also find studying my calendar for the week ahead helps me keep things in check. I often open it on a Monday and start crossing out things I know will tip me over - and the people who matter always understand. So if there’s one piece of advice I can offer anyone with MS it’s that - learn the art of listening to your body. For me, my wheelchair has become my safety net because no matter how bad I feel, I always know that I can say “Tomorrow I will”, and that’s a beautiful thing.
FDA approves the drug Siponimod, to treat people with active secondary progressive MS The US Food and Drug Administration (FDA) has approved a new drug, siponimod, to treat MS. The FDA decision approves the drug to be used for relapsing forms of MS, including for people with secondary progressive MS who continue to experience relapses (a phase described as active secondary progressive MS). This follows successful trials showing that siponimod slowed disability progression and reduced inflammatory activity. Siponimod is currently being reviewed by the European Medicines Agency (EMA), the body responsible for drug licensing in Europe. A decision is expected later this year. Siponimod is an immune modulating drug, taken as a pill, once a day. Professor Xavier Montalban, Chair of the International Medical and Scientific Board for MS International Federation, commented: ‘This is another important step in our efforts to make sure that all types of MS can be treated effectively. ‘Each new drug that is developed and approved not only gives us a new treatment option for people with MS; it helps us to understand MS better. Of course we still have much work to do, but piece by piece we are unravelling this disease and making strides towards our ultimate goal of stopping MS.’ In many countries, people with secondary progressive MS who still have signs of inflammatory activity can continue with existing treatments for relapsing MS. Siponimod’s approval by the FDA specifically applies to these people, as well as those with other forms of relapsing MS. Some countries do not allow drugs that have been approved for relapsing MS to also be used to treat secondary progressive MS. Siponimod could provide a new treatment option for those living with active secondary progressive MS. The clinical trials tested siponimod against placebo, not against other treatments. The largest (Phase 3) trial was conducted across 31 countries. When enrolled into the study, trial participants had been living with MS for an average of 17 years, and had an average age of 48. Read the FDA’s announcement here.
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