How to maintain the best quality of life with motor neurone disease (MND)  


Being diagnosed with MND can be traumatic. I knew that from experience.


What should you do?


Should you stop living normally?


Live happy?


Be curved in with the highest peak of depression?


No. Don’t be.


There are still ways for you to live just like everybody else — maintaining your sanity and live life to the fullest.


MND might be a complex condition and requires a wide range of support from a variety of health and social care professionals BUT you can still have the control you inherently got.


In my experience, I had a huge amount to think about things. I felt overwhelmed with was happening. Learning to know the problem helps you to understand more.


And you what? The problem with MND is that it is always moving on while you play catch up. These circumstances may caught you in a crossroads if not handled well.


What approach should be done? Should this be only applicable to individual circumstances?


Approaching this condition with more knowledge and confidence is a good first step.


For the tips, here you go:


  1. Purchase an equipment with proper assessment from the relevant professional. In short, don’t rush into buying the equipment for MND. What I do is to have an expert advice from occupational therapist or speech and language therapist. They’ll provide you with the required information as well as some recommendation on what, where and other considerations enclose to the equipment.


  1. Don’t rush decisions especially when these will affect your financial capability. This is a practical advice, though. If your finances can be compromised, then think again. Plan it out, consider the PROs and CONs. What I did is that I seek an advice from an independent financial advice and a benefits officer. It’s the wise thing to do.


  1. Consider the help advice about your future needs from an occupational therapist. Home adaptations as early as now is something to take into account, too.


  1. Ensure that the major equipment will have a continuous benefits for your present and future needs. Mobility aids is something to think of as this will affect your future needs. I recommend that an assessment from an occupational therapist should be sought after.


  1. Ever thought about social services? Then this is next tip: social services can provide a Community Care Assessment for yourself and a Care’s Assessment for your main care. This will help in identifying the needs, planning for emergencies and helping in the social care assistance in total.


  1. Don’t forget to give a lot of detail describing your worst day, not your best. This will ascertain the appropriate level of support to be given. I suggest you record your progress to keep track if there’s some changes or not. Providing the full picture of the care needs required can save you a lot of hassle.


  1. Log your queries about your health. Why? This helped me to not miss anything out. If you’re tired or overwhelming, the written notes can be helpful.


There are lots of other tips I want to share but then I want to hear what are your thoughts about the abovementioned information.

What is ALS?

This question will popped on your mind for sure.

So what is it?


For the definition, Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease, currently with no treatments or a cure. It progressively robs people of their ability to use their hands, to walk, talk, swallow and eventually breathe. On average, people live three to five years after their diagnosis.


ALS does not affect individuals, it affects families.


Living with the disease will make you question about the future. That a big part of living with the disease is questioning how to face the future — for yourself and for your family.


Living with ALS makes you question not just that but a lot of things.


Like, can you make the joy of living outweigh the burdens?


Aside from the mental burden of relying totally on those around you, you’ll also questions if the joy and purpose of your life outweigh the physical, mental, and financial burden you place on loved ones who know it is up to them to keep you alive? Those are only the major dilemma that usually knocks on your brain. It can be tormenting most of the times, you know.


Facing the future is different than having no hope for the future.


But good thing is that there’s that understanding of this disease which improves by leaps and bounds.


Why? Because IF there are treatments that have been developed for other difficult diseases then there’s a great possibility there’ll be treatments that will be developed for ALS, too.


But then again, that does not mean that the system is working perfectly. And we, as those who lives with this disease, can help make it work better.


It will be beneficial for those living with ALS, those who lived with ALS and those who want to know and wanted to extend their understanding about this condition.


Here are some facts that you ought to know:


  • That ALS is not contagious.
  • That although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable, and many people can live with the disease for five years and more.
  • That while the average survival time is 3 years, about twenty percent of people with ALS live five years, 10 percent will survive ten years and five percent will live 20 years or more.
  • That ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries and can affect anyone.
  • That the progression is not always a straight line in an individual either. It is not uncommon to have periods lasting weeks to months where there is very little or no loss of function.
  • That these ALS “arrests” and “reversals” are unfortunately usually transient. Less than 1% of patients with ALS will have significant improvement in function lasting 12 months or more.


Hopefully, this article has enlighten you into understanding what ALS is and how to deal with those having this condition to understand what they’re going through.

How to communicate with family, children and friends if you have MND

Very tough question.

But this should be faced straight ahead because in reality, our families are directly affected with what we will go though once diagnosed with MND.


Learning that I was diagnosed of MND is indeed a shocking revelation and worse part is as to how to share it with my family.


For those not familiar with this, MND affects everyone in different ways, but impact on movement, mobility and posture is to be expected as the disease progresses. This can be extremely frustrating and, for some, may result in falls and injury. It can also restrict living independently at home.


It’s quite a dilemma even how to start stating the “I have an MND” dialogue.


How did I overcome the fear of telling the big reveal? I did it without sugarcoating things and said what feels right. I had contemplated how and when to do it. I had a fair time thinking about it before telling anyone else. I was also thinking to just to only tell my immediate family while I’m still adjusting. And also, not just my immediate family but also my closes friends should be aware too. I don’t want them to be surprised in case the uncontrollable emotions surge in the middle of our gathering or a chat. That would create an misinterpretation on their part. And I don’t want them to think I set them apart from learning the truth about my condition. Instead of keeping it within my family circle, I owe it to my closest colleagues to understand me as well.


Once I had delivered the shocking speech, the reactions to my diagnose greatly vary. Some were still confused, some were shocked like how I would react, some were sympathetic, some were worried, some were very understanding. So, it’s a mixed of reactions, too.


The overall reaction is but of natural because the news is troubling and confusing to those who are not familiar with the MND diagnosis.


I keep the “reveal situation” scheduled. Explaining things over and over again can be very stressful and only adds up to the overwhelming feeling.


Open communication, although can be hard, but essential step. I was thinking of hiding this to protect myself and the people around me. But I realised it will only make things worse that what I originally intended to.


Open communication means developing a better way in order to face the condition as a team instead of doing it solo. Sharing your feelings and opening up actually felt good. Less burden to keep and more people to lend a hand which is beneficial whenever there’s a need to talk about the health condition and the social care that you may need. These type of specific worries will be addressed accordingly.


Bottom line is that, when revealing about having been diagnosed with MND, it is important to be clear on how you explain it to avoid confusion and/or misunderstanding.


Introduction: Living with MND

Every individual is different when it comes to responding how it feels living with MND. I, myself, has that feeling of uncertainty for some time. Some who don’t understand what MND or Motor Neurone Disease will never understand what it’s like, of course, and that is understandable.

The Street, Blandford Forum, Dorset DT11 9EU, UK

You might say, “I don’t have any clue as to what motor neurone disease is.


So, what is MND?


MND is a progressive life limiting condition that can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.


It is a progressive neurodegenerative disease. As the motor neurones deteriorate, this causes increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The muscles first affected tend to be those in the hands, feet or mouth.


Therefore the effect may vary from one person to another. It’ll vary from the different experience, from symptoms and disease progression, to the length of survival time after diagnosis.


Living with MND, I feel a range of emotional responses that are most of the time confusing. Some of those mixed emotions that I felt (and still feel) are shock, fear for the future, denial, anxiety, anger, isolation, intense sadness, guilt and finally, relief because at least I know what’s happening within me and why I’m experiencing these symptoms.


There are instances where I feel so depress that I considered MND as the worse and serious illness in all diseases. Yes, I had that insane thoughts sometimes because I can’t help it. Those low moods at times made me say to myself. “Poor me!”


There are also some instances where I tend to laugh or cry for not reason at all or at an inappropriate time. It makes you feel out of control that results to distressing myself. Even my closest confidante won’t even understand. But then, as I mentioned, it’s part of the uncontrollable emotions that you’ll undergo living with MND.


There are moments wherein, the denial part is so strong you might ask, “Why me of all people?” This clearly manifested that people with MND tend to lose the control in managing the illness. The illness’ unpredictability and rapid progression are hard to handle if denial is very intense. Learning to find a positive way with the diagnosis is not just your family’s responsibility, but yours too, if you’re having this illness. It’s tough but somehow, I had adapt to change and being able to ascertain how to take control of my life again.


The key point I keep in mind is that I think a lot about living and not about dying. Of course, I may not be around a year from now but on the other hand neither might anyone else, right? So I decided to not spend too much time worrying about the worst scenario and focus on now, the present and plan for the future, the future that I envision to live my life with.