Latest news with #multipleSclerosis
The Independent
19 hours ago
- Health
- The Independent
My husband wanted to go to Dignitas: the new assisted dying bill wouldn't have helped him
It takes something unusual to get an almost full attendance in the House of Commons on a Friday – and that unusual, potentially epoch-making event was the decisive third reading of Kim Leadbeater's Bill to legalise assisted dying, or as formally entitled, the Terminally Ill Adults (End of Life) Bill. I have a particular, and very personal, perspective on this. I believe this Bill, in its original form, and still less as amended, falls very far short of legalising assisted dying for very many of those who might have been pinning their hopes on it. So limited is its scope, in fact, that it will positively exclude many of those – such as my late husband – who have been the most determined in arguing for a right to choice at the end of life. The only people empowered to take advantage of the new law will be those judged by doctors to have less than six months to live. That will automatically rule out many, perhaps most, of those with chronic, progressive conditions, such as multiple sclerosis, motor neurone disease, or – in my husband's case – Parkinson's disease – some of the very people who have been campaigning most passionately for legalised assisted dying. How many doctors will commit to pronouncing that someone with – say, Parkinson's – has only six months of life left, knowing that this will be a licence for an assisted death? Almost none, I would submit. The pace of such progressive diseases can be unpredictable. Some, such as Parkinson's, may fluctuate, while always on a downward trajectory. Those with terminal cancer may be among very few able to take advantage of the law change. Even then, the time taken up by panels and paperwork, as required by the Bill, could take up an undue portion of the six months the applicant is deemed to have left. But let me set out my husband's arguments, which will echo those of many others. He (and I) had watched his mother's decline and death from Parkinson's. He knew, from the moment of his diagnosis, pretty much what lay in store, with the difference that he was diagnosed in his mid-forties and it affected primarily mobility, without the characteristic tremor. Drugs can control the condition in its early stages, and more so today than three decades ago, with glitches when medication needs to be increased or changed. As the disease progresses, the amount and complexity of medication brings problems of its own in the form of side-effects. There comes a point where the sufferer may find the side-effects as bad, or worse, than the acute tremor, pain or mobility difficulties caused by the disease. My husband reached that point in the early 2000s, a time that happily coincided with some of the first brain implants – deep brain stimulation, which functions a little like a heart pacemaker to replace electronically the missing dopamine in the brain. The operation tends to be more successful in arresting tremor; the outcome is more mixed for those, such as my husband, whose Parkinson's primarily affects mobility. Pluses and minuses, but it drastically reduced the amount of medication he needed, and so some of the side effects, and I would gauge, gave him an extra seven years of reasonably enjoyable life. Nikolai was utterly determined to have the DBS operation, fully recognising the then considerable risks. There was no point in trying to dissuade him. His great fear was of becoming helpless – remaining conscious, mentally alert (which he was to the end), but immobile, mute, and unable to do anything for himself. This is also why, practically from the time of his diagnosis, he became a supporter of Dignity For Dying, the charity that has long lobbied for assisted dying, and took every opportunity to insist that, when he judged the time to be right, he wanted to go to Dignitas, if there was still no legal assisted death in the UK. He was adamant and very clear about what he wanted – and didn't want. Yes, it was partly about control, but it was mainly about gradually losing so much of what made his life worth living. (The loss of dexterity sufficient to operate even an adjusted keyboard was one landmark, as was the decline in his speech.) And I would have taken him to Switzerland – probably by car, as the last of the road trips we used to take in Europe. I would also have been prepared to defend myself in court, should that need arise, as others in a similar position have done. I am not a natural law-breaker, but I would have had no hesitation in following that course. It should also be stressed that what amounts to a freedom to choose extends only to those with the means and the physical capability to make that journey to Zurich. I am well aware of the counter-arguments to the current Bill, and to assisted dying in principle and in practice. There is the risk that someone decides on an assisted death, when the diagnosis is wrong. There is the variable (to put it mildly) quality of palliative care, and the largely paid-for social care system in England that could cause sufferers to feel obliged, or be pressurised by potential beneficiaries of their estate to protect the inheritance. (And to anyone who denies that this is a risk, just read all the accounts of disputed wills that regularly appear in the media.) The most compelling contrary arguments – to me, at least – are those about the sanctity of life, that it is for 'man to propose and God to dispose', which are common to many religions. I also understand, while not quite accepting, the view that assisted dying implies an undervaluing, even dismissal, of people who are disabled or ill. As it happens, I have a cousin, Revd Michael Wenham, a retired teacher and Church of England vicar, who represents these counter-arguments with admirable conviction and clarity (See My Donkey Body, and many articles). I would never argue that assisted dying should be, or become, anything more than a fully informed and personal choice. I also have qualms about doctors who argue that their Hippocratic oath says 'do no harm', and assisting someone to die amounts, as I heard one say recently, "to the ultimate harm'. To me, an equal harm is to 'strive officiously to keep someone alive', which is what modern medicine, too often, allows. In the event, I was spared the agonising trip to Zurich. Seven years ago, my husband suffered a cardiac arrest while we were on holiday in Sicily. A mediaeval historian, he had spent some of the morning happily looking at the Norman tombs in Palermo cathedral, and died in the evening, within minutes of his collapse, for all the heroic efforts of the Italian ambulance crew, to revive him. In many ways, it was the perfect end, in the perfect setting – and the Italians, from the medics to the police to the undertakers, were exemplary, assisted by my nearly bilingual sister, who flew in the next day from southern Italy where she has lived for more than 40 years. That many of those who would opt for an assisted death, if it became legal, will depart this life, as my husband did, before the need arises to act on their wishes, does not diminish the fundamental argument. There is an urgent need for assisted dying to become a choice that does not depend on possessing the means to get to Dignitas in Zurich or risk a close friend or relative ending up in court.
WebMD
2 days ago
- Health
- WebMD
Too Warm or Too Cold With MS
Must I choose between uncomfortably cold and dysfunctionally warm? Before I had multiple sclerosis (MS), I didn't worry much about temperature. If it was cold out, I put on a coat. If it was hot, I could take off a sweater, but if I didn't, nothing bad would happen. After 40 years of MS, I have to think about temperature constantly. If I let myself get too warm, my body stops working. If I wait too long to take off that sweater, I won't be physically able to do it. Two of the three times MS has landed me in the emergency room, it was because of getting too warm and not being able to sit up. One time, the day started off cold, so I dressed in a few layers and went to see some art shows. When it got warm, I was too engrossed in the art to notice. When I noticed, I tried to take off a pullover I was wearing, but I could not lift my arms well enough to do it. I should have asked a stranger to help me take off some layers, but I didn't want to bother them or to be embarrassed. I tried to tough it out. I wound up on the floor and got an unwanted ambulance ride to the hospital. That was five years ago. Since then, my temperature sensitivity has gotten worse. Now, I'm also quite uncomfortable when I get too cold. My body hunches in on itself to keep warm, I start sneezing and coughing, and I can't wait to get home and warm up. But if I get too warm, it's worse. Then I need to get into bed, or everything falls apart. I wish it were a question of finding a 'sweet spot' – not too hot and not too cold. But for me, there is no sweet spot. I can actually be too warm (weak) and too cold (uncomfortable) at the same time. It's taken me a few years to realize just how important it is to take off layers when I start to get warm. Like right now, writing this, I had to take off a sweatshirt and just wear a T-shirt, because the day is warming up. How does this work out in the world? Memorial Day weekend, I spent a delightful two days at San Francisco's Carnival celebration. So much dance, music, art, costumes, and food, all in one place. I love it and almost never miss it, but it's in the Mission District, on the warm side of town. It is difficult for me to spend hours there without getting into a temperature crisis. This year, I was smart. I packed four layers: two T-shirts, a sweatshirt, and a sweater. I paid attention to the weather and how I was feeling and frequently changed between outfits so that I felt cool but not uncomfortably cold. It wasn't finding one right outfit; it was frequently changing to fit my body's needs at the moment. I missed some moments of the parade, because I was busy putting on or taking off a sweater. It was a lot of hassle, and I'm sure a few people were wondering, 'What's up with him?' but it enabled me to enjoy the event and not collapse. Temperature balance is important at home, too. My apartment, especially my work area, tends to get warm. If I'm busy writing, I might not notice until my fingers stop working and I can't type anymore. Right now, I'm still warm, so I have turned on an electric fan that sits by my desk. I love that fan; at its low setting, it really does seem to put me in a sweet spot of not being too hot or too cold. Fans are great; they use way less energy than air conditioning, so they're better for the environment, and they work right away. They cool you without unnecessarily cooling the whole house. So, there are a lot of tricks. To avoid heat, stay in the shade; if you're cold, get into the sun. Some people with MS wear cooling vests or neck wraps if they can't avoid being out in the heat, but San Francisco rarely gets that hot. Drinking lots of fluids, iced or not, helps control our temperature. Like with a lot of other MS symptoms, there are many things we can try. For me, doing the right things means taking our time, paying close attention to our bodies, learning and trying new things, finding balance, and then doing what works. That process applies to mobility issues, doing tasks, enjoying life, and a long list of MS challenges, including heat sensitivity like mine.
Health Line
13-06-2025
- Health
- Health Line
Cognitive Changes with Secondary Progressive MS
This progressive form of multiple sclerosis (MS) can cause changes in memory and other cognitive abilities, ranging from mild to severe. Knowing what to look for and how to manage the changes can make a difference. Secondary progressive MS (SPMS) can affect both physical health and cognitive abilities. Results from a small 2025 study found that just over 55% of people with SPMS experience some form of cognitive impairment. The condition may affect memory and slow down the speed at which the brain processes information. It may also reduce communication abilities, reasoning faculties, or attention span. These cognitive effects are often mild and manageable, but they can vary in severity from person to person. You can take steps to help maintain your cognitive health if you live SPMS. To manage the cognitive effects of SPMS, it's important to be proactive. Here are some strategies you can use to identify and manage cognitive changes. Watch out for signs of cognitive changes SPMS is a progressive condition. Over time, it can cause new cognitive symptoms to develop and also cause existing symptoms to get worse. To identify cognitive changes, go for regular screenings. Guidelines from 2018 recommend that people with MS be screened for cognitive changes every year. It's also important to let your doctor know if you notice changes in your cognitive abilities. For example, you might be experiencing cognitive changes if you're: forgetting things more than you used to having difficulty finding the right words to express yourself finding it more challenging to keep up with conversations or familiar activities showing signs of impaired judgment or decision making skills finding it harder to navigate social relationships receiving less positive evaluations at school or work If you notice changes in your memory, concentration, or other cognitive abilities, let your doctor know. They may use one or more tests to check for cognitive decline. Identify the cause of changes If you experience cognitive decline, your doctor may use one or more tests to identify the cause of those changes. SPMS is one of many things that can affect your cognition. Other medical conditions, certain medications, or lifestyle factors may also impair your cognitive abilities. Your doctor's recommended treatment plan will depend on the cause of the cognitive changes. Your doctor may also refer you to a psychologist or other specialist for testing and treatment. Try cognition exercises and activities To manage cognitive symptoms of SPMS, a healthcare professional may advise cognitive rehabilitation exercises. Some 2020 research has found that implementing certain at-home, computer-based learning and memory techniques may help improve cognitive function in people with SPMS. Your doctor or specialist may also encourage you to participate in mentally stimulating activities. This may help build your cognitive reserves. For example, you might find it helpful to complete crossword puzzles, play card games, write poetry, or learn to play a musical instrument. If your doctor or specialist believes the cognitive changes are due to another medical condition, they may recommend other treatments to manage it. If they think the cognitive changes are a side effect of medication that you're taking, they may advise changes to your treatment plan. They may also advise you to make changes to your diet, exercise routine, or sleep habits. An overall healthy lifestyle is important for supporting your physical and mental health. Make small changes to your daily habits Tweaking your daily habits may help you manage changes to your cognitive abilities. For example, it might help to: Make more time for rest and take breaks when you feel fatigued or distracted. Focus on one thing at a time and limit the amount of multitasking that you do. Reduce background noise and other distractions when you're trying to concentrate. Use an agenda, journal, or note-taking app to keep track of upcoming appointments, to-do lists, important ideas, and other information. Set alerts on your smartphone to remind yourself about important dates, deadlines, or daily tasks. If you're finding it difficult to manage your responsibilities, you may need to scale back on commitments at work, school, or in your personal life. If you can no longer work due to the cognitive effects of SPMS, let your doctor know. They may refer you to a social worker or other professional who can help you learn if you're eligible for government-sponsored disability benefits.
WebMD
12-06-2025
- Health
- WebMD
More Thoughts on the Myth of the Perfect Patient
In my last post, I talked about the extreme efforts I took to be the healthiest, most perfect MS patient. I realized I had more to say on the subject. If the average person looked at my diet today, they'd still think I was pretty strict. I still cut out most inflammatory foods: gluten, dairy, excessive sugar, corn, oats, veggie oils, and highly processed foods. But some "bad" habits have definitely snuck back into my life. I drink coffee every day, have Diet Coke a few times a week, indulge in (gluten-free and vegan) sugary desserts, eat out often, sacrifice sleep for fun, no longer read food labels with a magnifying glass, blast music through my headphones, and occasionally grab fast food after a night out. And with these choices comes guilt. Constant, nagging guilt that I indulge so much despite having an inflammatory condition. You would think I'd have more self-restraint, given the implications, and yet I've entered a chapter in my life where that's just … not a priority. People are often surprised by my lifestyle. Those who knew me throughout my MS journey saw me transform from a lifestyle that was average, to extremely strict and healthy, to average again, and now possibly even slightly unhealthy. They're shocked that I've "regressed" so much, and I get questioned about it constantly. I'm always uncomfortable answering. What do I say? "Yes, I still have multiple sclerosis and it's a really scary disease, but I'm just kind of taking a break from being healthy"? Or when people who newly meet me realize I have MS, they often question how it's possible when we seemingly live the same lives. They applaud me for having so much energy and "handling it so well." But they don't see me take three-hour naps just to get through my day. They don't see the migraines, numbness, and spasms that creep up on me. They don't see the constant doctor appointments, blood tests, and MRIs. Why are they so shocked by my diagnosis? Why are people shocked that I stopped eating such a strict diet? Why do they make comments about it? Why do their comments make me feel even more guilty? Why are they allowed to drink a can of soda, but not me? Nothing is worse than when someone points out I'm doing something unhealthy and asks how it affects my MS. Even when they don't mention my MS directly, the implications of my chronic illness hang heavy in the air. Because the reality is they're projecting an image of a perfect patient onto me, and that simply does not exist. Even when I was at my healthiest, I wasn't perfect. Eating that healthy gave me extreme anxiety, and any misstep sent me into a spiral. But truly, you cannot win with a chronic illness. When you try to eat super healthy, you put immense pressure and stress on yourself. When you decide not to prioritize it, the guilt and shame eat at you. Not to mention that your body changes throughout each transformation, making the transition even more obvious and difficult. When people come to me for advice about managing MS through lifestyle changes, I feel like an imposter. Yes, for almost two years I was eating strictly healthy and following all the health trends. But now, I don't really think about them. I feel inauthentic talking to people about what they should do to be healthier because I don't currently follow those practices. Sometimes, I wish I could recapture that energy, passion, discipline, and motivation I had to be so healthy. But I'm not perfect, and I am certainly not the perfect patient. For now, I will enjoy my indulgences. I will remind myself that nothing in life is permanent and that life has many chapters. I will never be the perfect patient, because there is no perfect patient. It is not my fault I have MS, and there is no need to punish myself more for it. I'm sure my healthy habits will come back to me one day. For now, I will enjoy myself in ways I never even thought possible a few years ago. And I'll try to let go of the guilt that comes from not living up to an impossible standard. Maybe the healthiest thing I can do is accept myself exactly as I am today, and try my best to live in the present.
CTV News
12-06-2025
- Health
- CTV News
Calls for multiple sclerosis drug coverage
Vancouver Watch B.C. is the only province that doesn't cover the cost of a powerful and pricey medication for people with multiple sclerosis.
