Struggling with voice loss due to SMA | New medical equipment reminds me of the harsh reality of SMA

As this writer’s voice grows weaker, she struggles with the loss of another ability

Struggling with voice loss due to SMA | New medical equipment reminds me of the harsh reality of SMA

“OK, SMA. You win,” I thought after signing off from a virtual meeting.

I didn’t know how it was possible to feel so defeated yet relieved about finding a solution for one of my recent health woes. But there I was, staring up at my ceiling and arguing with my intrusive thoughts about why this was supposed to be a good thing.

Allow me to explain.

A few weeks ago, I lost my voice. In the past year, my ability to speak has declined due to general disease progression. But since getting my NJ feeding tube, it has become increasingly difficult. I either squeak my way through a conversation sounding like a dying mouse, or my voice sounds completely normal. There’s no in between, and it’s indescribably frustrating, to say the least.

However, more recently, my voice went entirely. Though it’s difficult to determine the exact cause of this, it is likely the result of irritation and swelling from my frequent NJ tube changes. For a week, I battled between staying much quieter and continuing to strain my voice, because speaking is my main form of communicating my needs. I knew there was a simple solution all along — I just didn’t want to face it.

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Confronting reality

I struggled with my voice for a week before conceding the fact that I needed to find a way to make my voice heard. And all week, I was fully aware that there was a voice amplifier on my desk — a viable solution that would have saved me a lot of frustration and strain.

I bought the amplifier last summer for outdoor gatherings and used it a few times in group settings. There are many external noises outside, and using it allowed me to participate in conversations without having to repeat myself multiple times. Truly, it was a great find. It also left many people wondering why I didn’t use it every time I had company, regardless of whether we were indoors or outdoors.

The short answer is that I am one stubborn person. But the long, more complicated explanation is that I don’t like using medical equipment unless I have no other choice. It feels embarrassing to write this, only because I know how foolish it sounds, but my skewed way of thinking tells me that getting new equipment means SMA is winning. It means one less ability I can perform independently. I’ve been trying to break this vicious thought cycle for a long time.

It might not make sense to most people. In fact, it doesn’t make sense to me sometimes. After all, medical equipment is supposed to help me. It’s supposed to make my life easier. I love my wheelchair and BiPAP machine, two tools I use every single day. So why am I open to some and not others?

This is a question I’m still exploring, but I suspect it comes down to finding acceptance. I don’t want my voice to get weaker. I want to be able to talk at the same decibel I always have. Sure, my voice has always been weak. But after managing so well for so many years, I don’t want to adapt to new equipment. I don’t want to admit I’m weaker. I don’t want to accept my new reality.

Even though muscle weakness is the name of the game with SMA, losing abilities still stings. Having to use new equipment still reminds me of what I’ve lost.

While I don’t know if my strained voice is permanent, using my voice amplifier during my meeting (and thereafter) was a stark reminder of what my future might hold. Yes, it was the answer to my problem, and I’m thankful to have solutions that improve my quality of life. But it doesn’t take away from the harsh reality that comes with living with a progressive neuromuscular disease.


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Japanese Health Secrets Can Help Anyone Struggling With Weight Loss

  • Kaki Okumura is a Japanese wellness writer and illustrator who lived in the US until she was 12.
  • Okumura struggled with being overweight and tried numerous dieting tactics, but none of them worked.
  • Her book “Wa: The Art of Balance” will be released in March and focuses on 4 Japanese practices that helped her. 

This as-told-to essay is based on a conversation with Kaki Okumura, the author of “Wa: The Art of Balance,” a book set to be published on March 14. It’s been edited for length and clarity.

I remember looking down at the family photo and feeling my heart sink. I couldn’t help it. I was clearly the only one who was overweight.

I’m Japanese, but having been raised in the US until I was 12, I had found myself facing a health challenge that a lot of other Americans face: being overweight.

If my family had shared this trouble with me, I may not have felt so alone in my journey.

But my family just didn’t struggle in the way I did, perhaps because most of them lived in Japan — a country that is a leader in longevity and has very low rates of obesity. 

My parents were kind and never shamed me for my body, but I still couldn’t help but feel an intense amount of pressure to change the way I looked. So I embarked on a number of dieting tactics — I tried everything from calorie restriction and intermittent fasting to low-carb. Some worked, with varying levels of success, but none were sustainable.

At least, not until I moved to Japan.

I always had an image in my mind that people in Japan ate very healthfully — that they didn’t eat fried foods, meat, or ice cream — and most of their meals were composed of rice, fish, and steamed vegetables.

matcha desserts

Matcha desserts are one of the most popular treats in Japan.

Kaki Okumura



But after living there, I started to realize that Japan is just like any other developed country: they have snacks, they have fast food, and they certainly indulge in sweets. It was clear that Japanese people enjoyed these foods regularly too.

So what’s the secret? It’s in balance.

Since following these 4 principles, I have never struggled or worried about the way I ate. 

1. Moderation

One of the first things that people who visit Japan will say about the food is how small the portions are. When you go out to eat in Japan, you’ll probably be able to finish it in one sitting, while in the US you’re probably going to want a takeout box.

Japanese food

Portions served in Japanese restaurants are often just right.

Kaki Okumura



But these moderate portions are one of the key reasons why people in Japan often eat whatever they want — and many without rigorous exercise routines. When you eat in moderation, nothing has to be off-limits, and you can relax about eating cake at birthdays or steak to celebrate a job promotion. Consequently, we feel less stressed about food.

I came to realize that sustainable healthy eating is not about willpower or self-discipline, but it’s about being able to incorporate the foods we love, in moderation.

2. Variety

When you go to a Japanese restaurant in Japan, you often come across a meal set composed of rice, miso soup, a protein dish, and a few vegetable side dishes. The dishes can range from grilled fish and steamed spinach, to deep-fried chicken and a salad.

Japanese meal

Eating a variety of dishes in a meal helps to keep your diet balanced, and your mind happy.

Kaki Okumura



The key point is not so much the actual dish itself, but that there is such a wide variety of dishes in one meal. This way, people can easily get a variety of nutrients without having too much of any one thing.

We need carbohydrates, fats, fiber, and protein, but instead of having to overthink how to incorporate them together, the Japanese style embeds balance into each meal by having various mini dishes.

The variety also keeps meals interesting, so you don’t feel restricted or deprived of anything, while still eating everything your body requires.

3. Simplicity

I’ve found that vegetables are often treated as a necessary evil in the US. There is no shortage of recipes and articles that are worded like “How to make vegetables taste good” or “Vegetable dishes you’ll actually want to eat.”

With the assumption that vegetables don’t taste good, we end up with recipes that will do anything to mask the flavor — often with heavy amounts of salt, oil, or sugar.

Contrary to that, in Japan, the narrative around vegetables is the opposite: that they are delicious.

Japanese nabe

Popular dishes often have a significant variety and amount of vegetables included.

Kaki Okumura



It’s common for vegetable dishes to be seasoned lightly, often steamed or even raw, like the shredded cabbage that often comes with tonkatsu, Japanese pork cutlet.

Popular Japanese movies, for example Ghibli’s “My Neighbor Totoro”, have entire scenes of children eating plain, fresh, vegetables with delight.

totoro vegetables

Vegetables are not ingredients that Japanese children dread.

My Neighbor Totoro/Studio Ghibli



Once I started recognizing that the ingredients we use to cook are delicious, I started focusing on how to enhance and complement these flavors rather than mask them.

Sometimes, the most important ingredient is the one you leave out.

4. Self-compassion

This was the most difficult principle for me to adopt, but it was the most important.

When I would overeat, I would end up feeling bad about myself. Occasionally I might feel guilty, ashamed, or weak-willed.

An idea that helped me during moments like this was the Japanese phrase “kuchisabishii.” It’s a commonly used phrase that directly translates to “lonely mouth,” but it refers to boredom snacking, or when we eat without intention.

But kuchisabishii is less critical in nature than phrases like binge-eating, or compulsive overeating, because it recognizes that like loneliness, eating out of boredom is a very natural emotion.

Japanese meal

A simple home cooked meal that comforts the stomach as well as the heart.

Kaki Okumura



Instead of sitting in guilt and shame, by shaping experiences in which we may have eaten a bit too much as a forgiving experience, we can recognize and move on with kindness.

Living in Japan has shown me that healthy eating is less about self-discipline or willpower, which are not helpful in building lifelong habits, but it’s more importantly about finding a balance. Food is not just fuel, but it can be central to our culture, traditions, identity, and values.

I’ll be publishing a book in March of this year, called “Wa: The Art of Balance.” “Wa” — the Japanese word used to describe Japanese things — also means harmony, and represents the value of seeking balance to live a well-rounded life.

UK Leader Calls Crisis Meeting Over Struggling Health System

LONDON (AP) — British Prime Minister Rishi Sunak collected authorities ministers, medics and health assistance administrators in 10 Downing St. on Saturday for talks aimed at correcting a wellbeing treatment disaster that has seen countless numbers of sufferers stranded outdoors overflowing hospitals.

The federal government claimed it was “bringing together the finest minds from the overall health and care sectors to support share understanding and realistic solutions.”

The opposition Labour Social gathering dismissed the collecting as “a speaking store,” and experts warned there are no fast fixes for very long-brewing difficulties in the point out-funded Countrywide Wellbeing Service.

Britain’s health and fitness procedure faces an inferno of pressures, which includes rising need for care soon after pandemic restrictions have been eased a surge in flu and other wintertime viruses soon after two lockdown several years and employees shortages from pandemic burnout and a post-Brexit drought of European workers in the U.K.

Thousands of medical center beds are occupied by individuals who are fit to be discharged but have nowhere to go since of a dearth of spots for extensive-phrase treatment. Formal figures present that previous 7 days only a third of sufferers ready to be unveiled from a healthcare facility in England really still left.

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UK Leader Calls Crisis Meeting Over Struggling Health System

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That has led to ambulances caught outdoors hospitals with people who can not be admitted, and in turn to people today with wellbeing emergencies waiting around hours for ambulances to get there. Health and fitness leaders say the delays have most likely led to hundreds of fatalities.

On prime of that, a price tag-of-residing crisis fueled by soaring foodstuff and energy expenditures has left some wellness workers battling to make ends meet. Nurses and ambulance crews have staged walkouts, part of the country’s greatest wave of strikes in decades.

The pressures have renewed a very long-running debate about how to fund and operate the NHS, established up in 1948 to deliver free treatment to all, funded by way of taxation. As in other industrialized nations, extended life expectancies and an ageing inhabitants have greater demand on the broadly beloved but consistently overstretched company. Britain’s NHS has extensive been a political warm potato. Opposition politicians accuse the Conservative Occasion, in electric power because 2010, of continuously underfunding the health provider or looking for to privatize it by stealth.

Matthew Taylor, main government of health services umbrella human body the NHS Confederation, stated “this crisis has been a 10 years or additional in the generating.”

“High stages of flu, respiratory syncytial virus and rising COVID levels are exacerbating the problem but the induce is decades of below-financial commitment in staffing, funds and the absence of a extensive-term solution to the capacity-crunch experiencing social care,” he explained.

The governing administration suggests health funding continues to increase in serious phrases. It suggests community sector personnel are remaining made available pay will increase but that it can not pay for to give out raises to match inflation, which hit 11.1{bf0515afdcaddba073662ceb89fbb62b6b1bf123143c0e06b788e1946e8c353f} in Oct.

Well being union leaders are thanks to fulfill the federal government on Monday in an endeavor to close the strikes.

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