alswarriorsa

[alswarriorsa]

Updated Head to Toe

As I write this post I am watching ‘The theory of everything’. I watched it a few weeks after receiving my diagnosis, but it hits differently this time.

My reality is very different now to how it was then.

For one, I think Stephen Hawking was far stronger than I am. I struggle to get through an ordinary day, nevermind accomplishing anything grand. Secondly, I’m relating to the physical loss in a whole different way and lastly, I’m experiencing the toll this disease takes on relationships.

My current symptoms include:

Head and neck drop and neck stiffness

Facial, tongue and full body fasciculations

Difficulty speaking and swallowing

Shortness of breath

Weight loss and decreased appetite

Weak and immobile left limbs with pain and inflammation

Sore, weak and stiff right limbs and I can barely use my right hand

Sore and weak body

My mental health has taken a beating. Having no certainty about any stability in my life going forward is unbearable. Because what is for certain is that I am not going to be able to work for much longer, and then I’m going to die. That might sound defeatist but it is the truth. The way I choose to live the life I have left should be in favour of my well being…

#als #mnd #mental illness #endals #motor neuron disease #voetsekmnd

[alswarriorsa]

Being the wet blanket

There’s a scene in the movie, “The Beach” that comes to mind, in light of this post. After a shark attack the community remove an injured man from their surroundings because his pained cries put a damper on the mood.

That’s how I feel about having MND. It’s annoying to everyone else.

For the first time since my diagnosis I was excluded from an invitation, and although it probably had nothing to do with me, the exclusion hurt.

There’s so much I’m already missing out on, it isn’t nice to feel like a third wheel or wet blanket.

I’ve spent a day in solitude and silence and it feels empty and alone, even though it shouldn’t.

I don’t think anyone really enjoys spending time with me anymore, because everything is centred around this disease and my needs as a patient, not as a person.

But that’s the other factor- I’m at risk left alone. Is it worth the risk or am I just being selfish?

It’s a very strange feeling.

Fuck you, MND.

#als #voetsekmnd #mnd #motor neuron disease #endals

[alswarriorsa]

Head to Toe

Living with MND is obviously different for everyone living with the disease, but I imagine there are many ways in which symptoms or their effects are similar.

Let me walk you through my current head to toe:

I have fasciculations (muscle twitches) all over my body, starting from my face and tongue right through to my feet.

My jaw feels clenched. I often bite my tongue and the insides of my cheeks.

My speech is slow, slurred and speaking has become difficult.

I yawn a lot, which may have something to do with my breathing, or the jaw itself. I’ve noticed that I sleep with my mouth open more regularly, and that is definitely with respect to my breathing.

My neck is stiff but if I tilt it far back, it drops by itself.

My left side is weaker than my right side, with muscle atrophy of the left arm and leg. This leads to muscular pain.

I have regular discomfort on my right side from sitting up. This is due to my right side overcompensating for the weak left.

I have foot drop on my left and walking is impossible unassisted. My left big toe hurts when I walk as my heel isn’t properly bearing weight.

On my right side, weakness is coming in on my right hand, right foot and arm.

I’m unable to sit up unassisted. Turning over in bed has become very difficult.

My skin has become more sensitive. Certain parts of my scalp itch. Two days ago sitting on a sewn-in button irritated me. Sitting in my loan wheelchair for more than a few hours, hurts.

Chewing and swallowing food as well as eating with utensils has become much harder. I’m actually looking forward to my PEG.

In general, fatigue is real. I sleep a lot!

Further to this is the emotional toll of it all, which is often worse.

I don’t know how different this list will be in six months time, but I know that I’ll be ok.

I insist.

#als #mnd #voetsekmnd #endals #motor neuron disease

[alswarriorsa]

The struggle is REAL

If this blog provides any insight into living with MND, it’s the struggle with ups and downs.

The reality of the progression, coupled with the trauma of it all, sent me into an absolute downward spiral over the past few days, but here I am. Exhausted, wounded but out on the other side.

There’s an illustration of an iceberg above and below the water’s surface, which comes to mind…

Above the water line it appears small, but below the water line a monstrous hazard exists, ready to tear open a ship’s hull.

Not that the visible effects of MND are insignificant, but certainly what can’t be seen is a real threat to one’s welfare.

It’s brutal and the efforts to stay positive aren’t always successful, and like the disease, negative thoughts become harder to overcome.

Yesterday I had to make certain decisions about my approach as I was feeling overwhelmed and like I was nearly at rock bottom.

1. I need to talk to a professional. It can’t do anything but help.

2. I need to find better balance and routine.

3. I need to talk about how I feel.

4. I need to allow myself the lows, but I need to work through them.

5. I need to add joy to my life, even if in little actions like watching Disney movies 🫶🏻

Life isn’t a waste of time. It’s valuable - and maybe that’s why it isn’t easy.

#als #mnd #voetsekmnd #endals #motor neuron disease

[alswarriorsa]

Out of Control

I’m spiralling. It feels like I’m free falling without a parachute, about to collide with Mother Earth with a zero chance of survival, and in a way, that’s what MND is.

It robs you of your independence, it robs you of your dignity and eventually it takes your life.

I find myself feeling so angry, sad and frustrated all at once. I can’t express myself properly, I hate the impact this has on me and also the people around me.

I realise that I need therapy, and soon. I’m not coping with this at all, and perhaps it’s just that I’m processing what this all means for my immediate future.

It’s so hard to stay positive when the debt calls keep coming and the universe never lets up. When your family aren’t prepared to help. When people you know that can afford to help, just scroll past your pleas for assistance.

And I know I’m both right and wrong on many of these things, but my emotions are a mess and I can’t adequately deal with anything at the moment.

I want to be held and reassured, but that one thing I want I’m not getting because I’m lashing out.

Today I’ve been jealous of a kitten. Because I too want to be held and adored, but my reality is undignified loo visits, mobility assistance, work and work admin - not the light and fluffy stuff.

Who would adore an angry person who’s a pain in the ass? Pass the kitten.

My conversations don’t get to be fun. They are always about what needs to be done or happen next. What PMBs cover, or don’t, the wheelchair quotes and the next invoice.

And in the middle of all this I free fall.

Finding joy would be great, but I don’t know where to start. It’s practically evading me.

I want to feel like a normal person, for just one day, where I’m me, and not the disabled patient.

I just want my life back.

#als #mnd #voetsekmnd #endals #motor neuron disease

[alswarriorsa]

It’s happening too quickly

I’m in panic mode. My legs are becoming increasingly weak, as is my right hand.

It’s changing by the week.

Although I was diagnosed in March 2023, essentially I’ve had symptoms for over a year, which was misdiagnosed.

That client comment of it being “oddly rapid” still strikes a nerve.

But here’s what we know:

MND is a progressive neurodegenerative disease, and unfortunately, the prognosis is often poor. On average, life expectancy after diagnosis ranges from 2 to 5 years, although this can vary greatly depending on individual circumstances.

According to this, I’m at stage V:

Am I scared that the fast progression means a swift death, or am I fearful of living for years, bedridden?

#als #voetsekmnd #mnd #motor neuron disease #endals

[alswarriorsa]

Screaming into the void

It’s nearly 1am. I’m sitting in the dark working, feeling productive although frustrated.

I was ten minutes away from finishing a 10.2GB download, when Eskom struck and the power went out. That took hours and now I’m back to square one.

I’m seeing the top of my workload and making progress, despite a really tough week, health-wise.

My right ankle is stiffening up like my left, so it’s no surprise that I fell this morning. Battered, bruised, sore and mentally exhausted.

Earlier in the evening one of my clients referred to my MND as “odd in its rapidness.”

It is rapid though. Although that isn’t necessarily odd. My right hand is affected already. I’m struggling with a mouse and keyboard.

Although I’m so grateful for the support I have, part of me wants to scream into the void, grab people by the shoulders and shake them, “I’m dying, help me!”

I don’t need fancy trips or ‘reach for a dream’ wishes…

I need tools to keep me working so that I can survive.

I need help taking care of my mom.

I need my medical aid to cover MND.

And maybe, just some kindness sprinkled in between.

—

I'd like the memory of me to be a happy one.

I'd like to leave an afterglow of smiles when life is done.

I'd like to leave an echo whispering softly down the ways,

Of happy times and laughing times and bright and sunny days.

I'd like the tears of those who grieve, to dry before the sun;

Of happy memories that I leave when life is done.

#als #mnd #voetsekmnd #motor neuron disease #endals

[alswarriorsa]

The burdens of truth

My relationship with my mother has always been complicated. I know that in her own way she loved me. She certainly did express pride at many points in my life, but it was still a very difficult relationship.

On the outside looking in, it probably seemed quite rosey. Easy to overlook the thorns.

For one, my mother has always had psychological problems, and a fair share of these were only accurately diagnosed when she went into frail care in 2019.

I grew up with a very temperamental woman that would snap very easily. Although she wasn’t physically abusive, verbal abuse was common, followed by manipulation and bullying that is associated with being a narcissist.

A close friend witnessed her aggression over a pot of hot oil, which I still dream about.

As a teenager I remember my father calling me to their bedroom to find my mother a mess of tears and tissues, insisting that we don’t love her and wish her harm.

These moments are entangled with the good memories of how she stood up for me against rogue teachers at school, or moved mountains to get me what I wanted or needed.

She would remind me frequently of how much I cost her financially, but she did make sure I had what I needed.

I felt a very strong urge to connect with her my whole life, to make her proud, but I don’t know if I succeeded.

It recently dawned on me that my mother wasn’t there for any of the truly difficult moments in my life.

What she didn’t accept, she rebuked. When she didn’t like something or someone there were no exceptions.

When I introduced her to the person I was to marry, she shot me in the knee with a pellet gun, two months after arthroscopic knee surgery.

I once dated someone with scoliosis, and she asked quite proudly, “what’s its life expectancy.”

I went through a lot on my own, without her being there for me, yet I still wanted to share my MND diagnosis with her. I didn’t, as she no longer knows who I am.

In 2019 I was alerted by one of her sisters that her behaviour was strange and I went to investigate.

Once examined, it was obvious that she had dementia, which caused her to have a violent breakdown.

I eventually had to step up, move her to Johannesburg, get her set up in a care facility and handle her bills.

With selling her house and accessing her savings, we were able to cover most of the initial expenses and her very expensive care.

Five years later I’m solely financially responsible for her, with all her funds dried up, and a terminal illness of my own.

Now what?

I’ve turned to her sisters and our family for help, but they’re either unable to or unwilling.

I’m dying and this responsibility still sits heavily on me.

Let me be clear, my mother isn’t a burden, but the truth is that I will probably die before her. What happens then?

#als #mnd #voetsekmnd #endals #motor neuron disease

[alswarriorsa]

Thoughts brewing

The strangest and undoubtedly hardest aspect of my MND is it’s progression.

Two weeks prior to this post, I could stand up by myself. Now, I need help.

My right hand has become far weaker as well. This isn’t for the faint of heart.

The pressures of adulting and the onslaught of MND pushed me into a very unhappy corner. And then I chose to visit a brewery.

No kids, I’m not advocating alcohol as the solution to life’s problems. Finding joy, is.

What’s even better is finding an accessible place to enjoy a beer at.

They see me rolling.

#als #mnd #voetsekmnd #endals #motor neuron disease #trans man #ftm #transgender #transman #transisbeautiful

[alswarriorsa]

We’re all dying - please stop saying this

Sure, everyone dies. Life is the one thing that we can all agree, isn’t guaranteed.

However, we still (as emotional and social beings), experience shock and grief when someone close to us loses their life at a young age. “Parents shouldn’t have to bury a child,” is a common sentiment.

We don’t expect to die in our 20s, 30s or even 50s. Our factory setting (at least in thought) is that we’ll grow old, unless something devastating happens.

When you tell a person who has a fatal disease, “We’re all dying,” essentially you are stating that there’s no significant difference to knowing that your death is near, than that of having a ‘normal’ life expectancy.

With one statement you diminish the seriousness of their own illness and minimise their unique experience.

It’s dismissive and belittling to someone who is facing a terminal illness, and they may feel like their fears and concerns aren't being taken seriously.

Don’t forget that with most fatal illnesses there is a varying degree of pain, suffering and grief, for the person with the condition and those around them.

We’re scared, and you’re not making us feel better.

What to Avoid Saying to Someone Who is Dying

As you connect with someone in the process of dying, try not to:

Discuss your religious thoughts, especially without asking first

Say anything canned or corny about death- this may come across as disingenuous

Discuss your own beliefs about why they are dying

Shift the discussion to focus solely on your feelings

Hyper-focus on end-of-life plans

Discuss how you'd feel if you were in their shoes

The bottom line is, treat us with compassion - just the way you would want to be treated.

#als #mnd #voetsekmnd #motor neuron disease #endals

[alswarriorsa]

Doggies and Digging In

The 21st June marked World MND Awareness Day, and it delivered great news - my application for a service dog was accepted! Now, we just wait for a suitable dog and training dates!

Although I’m probably one of the first pALS (people with ALS - although not my favourite acronym) to apply for a service dog, it’s a brilliant opportunity with both mobility assistance and mental health benefits. I’m planning on documenting the whole process, that perhaps this can break new ground for MND patients.

I’ve also received great news from a friend in online media, who would like to interview me and share my story as a member of the LGBTIQA+ community, and an MND fighter.

Furthermore, I’m getting involved in working with NPO’s like MND/ALS South Africa from a web and social perspective, to build awareness and strengthen their brand positioning.

It feels like progress, it feels like giving back and it feels like there’s hope for the future.

#als #mnd #voetsekmnd #endals #motor neuron disease #trans man #ftm #transgender #transisbeautiful

[alswarriorsa]

The REAL Heroes

Some nights I have the most extra-ordinary dreams. Last night I dreamed I was camping with my partner. We swam in a river, walked along the banks and just enjoyed nature. Of course, in reality it's a very different picture.

Dreams can remind me of what I lost, or I can choose to live vicariously through them. Making that distinction can be so hard, choosing to be positive can be hard.

In this battle, the real heroes are the people in our lives who work so hard to keep us positive and who help us find joy.

Firstly, I wanted to acknowledge the incredible work of the medical professionals who are on the front line in the fight against MND. These individuals truly are the unsung heroes of this disease, providing care and comfort to those of us living with MND on a daily basis. Whether it's helping us manage symptoms or simply being there to offer support and understanding, these individuals are truly making a difference in the lives of those of us who are affected by this debilitating condition.

I also wanted to take a moment to express my gratitude to my partner, who has been incredibly good to me during my journey with MND, through the good days, bad days and even diabolical days...And of course, I couldn't forget my closest friends, who have been an incredible source of support during this difficult time. Their understanding and empathy have meant the world to me, and I am so thankful to have them in my life.

But it's not just my loved ones that have been there for me. I am also incredibly thankful for the support and generosity of the MND/ALS organisation here in South Africa. They loaned me a wheelchair that I affectionately call "Mevrou Laubscher" (also because that's the name written on it), and it has been a lifesaver in terms of helping me maintain my independence despite the challenges posed by MND.

Recently I joined the CReATe research study with Professor Heckmann at UCT/Groote Schuur and hope to contribute in some way to the search for a cure. I've already had two appointments, with the next in July.

So to all the carers, medical professionals, loved ones, and organisations out there fighting against MND, thank you. Your compassion, support, and dedication are what make all the difference in the lives of those of us living with this disease.

#MND #ALS #VoetsekMND #endals

[alswarriorsa]

Progression and Depression

There’s two aspects of Motor Neurone Disease that impact my daily life; progression and depression.

MND is progressive, which means that the disease and related symptoms worsen over time. It affects everyone differently, so its impossible for doctors to provide their patients with an accurate timeline, but the prognosis is the same - in the end, we die.

In my case, progression from an "annoying twitch" in my left arm, to practically no use of the arm at all, was just five months. Seven months later I'm wheelchair-bound, as I'm unstable on my feet and only able to manage a few short steps from bed to bath, whilst assisted. I fall very easily and have the head scar to prove it.

MND is also said to be a painless disease, which is theoretically true, however, the effects on the body are painful, from stiffness to cramps and muscle atrophy.

I can't sit up straight as my back is weak. When I force it, my right side spasms. I use my right arm to pick up my left arm, as it's weak and stiff. It hurts constantly. I have foot drop on my left foot, with stiffness and cramping.

My swallowing is strained and for that reason, I have surgery next month to install a feeding tube (PEG). Recently, I've developed hectic tongue fasciculations (tremors) and my speech is heavily affected.

I slur, struggle to voice words and be understood and worst of all, I'm 100% mentally sound, with a lot to say!

My daily care involves assisted bathing, dressing, meals prepared for me, assisted mobility and as of recent, my speech has worsened, so I’m withdrawn as free text to voice apps aren’t easy to use, with one mildly cooperative hand.

I can still create, conceptualise, strategise and contribute to my clients and the outside world, in general. But, I need help to do that and its extremely frustrating.

Today I finally got an assisted aid for showering, but it too comes at a monthly rental cost. Motorised wheelchairs and communication tools are incredibly expensive with no free government or private sector funded resources available in South Africa.

Medical aids in South Africa don't even have this disease under their PMBs!

The MND/ALS organisation very kindly do provide some loan equipment to members, but it sadly isn't enough to provide the support and freedom people need to continue working and providing for their families.

You feel trapped inside your failing body. Therein lies the second problem - depression.

I'm fundraising as best I can, but I know people have their own problems to deal with. I'm told to share my story, that with hearing what I'm going through, people may be more sympathetic. But, there's a problem in that, too. On the days I feel strong enough to share words of encouragement or positivity, I might give the impression that I'm "okay."

If I vent my real anger and frustration, I’m seen as negative or mopey.

I'm tired and in pain. I have umpteen financial responsibilities, and I’m not able to take on more than I’m doing. Sometimes that manifests and it’s human.

All I really want to impart on people, is that kindness is free. You don't need to open your wallets, open your mouths!

Don't just do it for me. Do it for everyone with MND. Because this disease picks anyone, at any time, any where.

Yes, you pick your battles, but sometimes, they pick you.

#MND #ALS #motor neuron disease #VoetsekMND #endals #fuckals

[alswarriorsa]

Genesis

It all started with a twitch. A simple little muscle tremor in my left arm, near my bicep.

I can’t recall exactly when in 2022 it started, but it was in May that I finally decided that “stress” was not the right self-diagnosis.

By May, it wasn’t just one twitch. It was a wave of twitches, same arm, with a pinky finger tremor. My GP referred me to a neurologist, with a month and a half waiting period - however, she insisted it would be worth the wait.

In August 2022, after X-rays and scans, and with the way my symptoms presented, I was diagnosed with early-onset Parkinson’s disease. That diagnosis alone felt life changing, yet in hindsight was nothing close to the reality that would eventually close in on me.

I immediately started researching, reading everything I could, and started sharing my journey online, advocating for awareness around Parkinson’s… but after a few months, my symptoms just weren’t adding up or making sense.

By December 2022 I could no longer use my left hand or arm, at all. I had given up riding a motorcycle, playing guitar and even an instructor career in scuba diving.

After attempts to secure a follow-up appointment with my neurologist were unsuccessful due to availability, it was a stiff and painful left wrist that pushed me into the ER at a nearby hospital, that would change my life.

Late March 2023, I was given a thorough examination and neuro conduction study which provided the final answer - motor neurone disease.

I’m still sharing my journey online, and still advocating for awareness, but the harsh reality is that this disease is fatal and that South Africa is estimated to be 25 years behind the rest of the world in terms of health insurance benefits and clinical trials.

This isn’t just hard on me. It’s hard on everyone around me.

I’m hopeful that by sharing my experience and this journey, I’ll somehow be able to contribute to awareness and the fight to #endals.

#MND #ALS #VoetsekMND #motor neuron disease