This post was originally posted by Sue Waters on her personal blog here. Sue is not only the Support Manager here at Edublogs and CampusPress, she started this very blog, and has personally helped tens of thousands of educators – maybe even more. She’s the hardest working person we know, and we are honored to share her story here in hopes it helps others and spreads her important message. Sue, all of us that work with you are in awe of you every day.
When a doctor first suggested that my mother probably had Motor Neurone Disease (MND), also known as ALS (Amyotrophic lateral sclerosis), I told him to remove it from the list.
Why? Because how can that be? Only people you don’t know get MND.
Well — people you know can get the disease. 🙁
And it’s a cruel, progressive, terminal neurological disease that can strike anyone. MND has no cure or treatment, and it kills over 50 percent within 2 years of diagnosis.
MND attacks the nerves that control movement so muscles no longer work. Symptoms vary considerably between MND sufferers as it depends on which muscles are affected.
I’ve cared for my mum since she was diagnosed with advanced MND 6 months ago. She requires 24/7 care which I couldn’t provide without the support of my family, the Silver Chain Palliative Care team, the MND Association of WA and support from the company I work for.
My goal is to raise awareness of Motor Neurone Disease (ALS) to make others understand why donating to MND associations is important for:
- Supporting people with MND
- Funding research to find a cure
Enduring Motor Neurone Disease
Make time to watch Enduring Motor Neurone Disease (MND/ALS) to appreciate how the disease impacts the sufferer and their family.
Spread the Word!
How can you help? Spread the word and the facts by sharing my post on your social networks.
MND Associations can’t support sufferers and fund research without donations. Increased awareness helps people understand why it’s important to donate and help fundraise.
Our MND Story
And for those that want to know our story …
Symptoms vary considerably between MND sufferers as it depends on which muscles are affected.
My mum has the least common form of MND and is a respiratory onset MND. Most MNDs start with limb onset and eventually have their respiratory muscles affected.
So far the disease has had minimal impact on my mum’s limbs, speech or ability to swallow but she has extreme drop head syndrome and her respiratory muscles are so affected that she is attached to non-invasive respiration 24 hours a day to ease the respiratory discomfort. Her room is her life because moving too much, even attached to a VPAP, causes too much discomfort.
It’s like being constricted by a boa constrictor and not being able to breathe.
Her day is spent juggling between 3 different types of masks, depending if she’s awake/asleep, and she has two different VPAP machines (day/night).
I keep her comfortable through the support of my family, the Silver Chain Palliative Care team, the MND Association of WA and support of the company I work for.
And my story? I fear what all other MND carers fear. What lies ahead? And am I strong enough to face the journey ahead?
Thanks for helping to spread awareness of Motor Neurone Disease (MND/ALS)!
If you would like to help fundraise to fight for a cure or to support MND sufferers, please contact your local MND or ALS Association. There is a great list of associations from around the world here.
My husband was diagnosed with ALS 2022 and he has been facing challenges. and we have done a lot of research. Recently he started taking phytomedicine treatment from Dr agumba. I’m so excited that he got healed with the treatment. It’s good news to share with others out there not to lose hope. You can also get the cure through https://dragumbasolutioncent.wixsite.com/spell or [email protected]
ALS is a cruel disease. My mum is 83 and had great difficulty speaking and swallowing much of anything. Food was getting trapped in her throat and blocking her air way was happening more often. she battled for each breath. The riluzole did very little to help her. The medical team did even less. Her decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of our primary physician, there she would have died. There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased her anxiety a bit. this year our primary physician started her on Natural Herbs Centre ALS/MND Ayurvedic treatment, 6 months into treatment she improved dramatically. It has been a complete turnaround with her speech, she no longer needs the feeding tube to feed, the treatment is a miracle. She recovered significantly! Visit Naturalherbscentre
ALS is a cruel disease. My mum is 83 and had great difficulty speaking and swallowing much of anything. Food was getting trapped in her throat and blocking her air way was happening more often. she battled for each breath. The riluzole did very little to help her. The medical team did even less. Her decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of our primary physician, there she would have died. There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased her anxiety a bit. this year our primary physician started her on Natural Herbs Centre ALS/MND Ayurvedic treatment, 6 months into treatment she improved dramatically. It has been a complete turnaround with her speech, she no longer needs the feeding tube to feed, the treatment is a miracle. She recovered significantly!
My first symptoms of ALS occurred in 2014, but were diagnosed in 2016. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then I decided to try alternative measures and began on ALS Formula treatment from Tree of Life Health clinic. It has made a tremendous difference for me (Visit w w w. healthcareherbalcentre .com I had improved walking balance, increased appetite, muscle strength, improved eyesight and others. ]
My first symptoms of ALS occurred in 2014, but was diagnosed in 2016. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then I decided to try alternative measures and began on ALS Formula treatment from Tree of Life Health clinic. It has made a tremendous difference for me (Visit w w w. healthcareherbalcentre .com I had improved walking balance, increased appetite, muscle strength, improved eyesight and others. ]
I totally agree with your topic we totally need to focus on this disease ! and prevent people from getting this disease