Discover and read the best of Twitter Threads about #MND

Most recents (10)

Examining pulse of a patient with ā€œMOTOR NEURON DISEASEā€ helped me find a cure
1.Motor neuron disease (MND) or amyotrophic lateral sclerosis (ALS), is a progressive neurological disease causing severe weakness and wasting of muscles. It has no cure and results in death in most.
2. A 50-year old man consulted me 6 months ago for a second opinion. He had complaints of difficulty in swallowing, slurred speech, weakness and wasting of muscles of arms and legs, which had progressed over previous 9 months.
#MedTwitter #neurotwitter #ALS #MND
3. He was seen by neurologist and after needle electromyography; diagnosis of ALS was made. In view of grave prognosis, patient wished for second opinion. On examination, he had muscle fasciculation, wasting of tongue, arms and leg muscles. Deep tendon reflexes were exaggerated.
Read 7 tweets
A brief #ALS thread:
5-10% of #ALS cases are hereditary and ravage families...
2/ Arguably the most devastating set of #ALS symptoms are the bulbar symptoms: slurred, then loss of, speech; difficulty swallowing, then loss of ability to swallow; involuntary muscle spasms affecting the jaw, face, voice box, tongue, and throat...
3/ I do NOT have hereditary #ALS, and, 3 years since diagnosis, I somehow, mercifully, have NO bulbar symptoms...
Read 5 tweets
Day 3 of #MND #ALS week:

Our latest paper is featured by @TrendsNeuro and so it free to download this month!

cell.com/trends/neuroscā€¦

I have never started a paper with a more brutally honest assessment šŸ‘‡šŸ‘‡ Image
Day 4 of #MND #ALS week:

Many people with MND don't get a chance to adapt with one stage of the disease before the next one hits.
It honestly feels like ->

uow.edu.au/index.html
Read 3 tweets
#MND #ALS is a heterogeneous disease & some say it should be distinct syndromes. Today our theory on how proteome homeostasis (proteostasis) is a unifying principle of ALS is published @TrendsNeuro cell.com/trends/neuroscā€¦ This is >10 years in the making. Let me explain: 1/7
12 years ago, at the MND/ALS symposium I spoke with a prominent neurologist/researcher and I ran my idea by him. He told me that it was too complicated and that I should work on it a bit, collect some evidence. Today we publish the result. In essence it goes like this:
2/6
What is a proteome exactly? A proteome is all the proteins in a cell made from the instructions in your DNA. These molecular machines do vital work and include things like haemoglobin to transport oxygen, enzymes to digest food, and collagen to provide physical structure... 3/6 Image
Read 6 tweets
One of the big Qs about #MND #ALS is 'what causes disease heterogeneity?'. E.g. Family members inheriting the same mutation but having very different disease courses. Our recent paper with @jakeayersPhD gets us closer. journals.plos.org/plosone/articlā€¦ Here is what I mean. A thread 1/7
First, a bit of background. @jakeayersPhD discovered that #MND #ALS could be transmissible in mice. A tiny amount of spinal cord material from a sick mouse injected into the spine of otherwise healthy mice could trigger disease. 2/7 link.springer.com/article/10.100ā€¦
Meanwhile, we had been characterizing how the pathological 'shape' of a protein SOD1 could be propagated from one cell to another in cell culture. 3/7
pnas.org/content/111/9/ā€¦ Image
Read 7 tweets
Here is a little story that was relayed to me that has made my day. Read until the end and you will understand why I love the @Wollongong_City community... A thread. 1/8 @UOW @ihmri
A woman who I have known for 20 years wanted to donate to my research. For perspective, she is 87, a local storyteller, parent of children with Fragile X and on the pension...
She wanted to donate $100. She looked at her budget and could only find $50. She decided to save up for the other $50...
Read 8 tweets
After a disappointing attempt at a cruise earlier in the year we turned to @Qantas to help us get away with the family to Perth. #MND #ALS @MNDAust

A thread.
@Qantas While a short flight SYD-PER is a relatively simple sojourn that people take for granted, for someone who is totally paralysed & relies on ventilation for life support, it is a BIG deal. I have been asked how we managed to pull it together. Here is how ā€¦
@Qantas Firstly, why Perth? The 30th International MND symposium was happening in Perth, so I was extra motivated, it was also a great opportunity to get away with the family. Planning started more than 6 months in advanceā€¦
Read 14 tweets
At the UofG press conference for the FIELD study results, published today @NEJM, @UofGMVLSā€™s @WillStewNeuro says ā€˜This is the largest study to date looking at the incidence of neurodegenerative disease in any sport not just former professional footballersā€™
#WorldChangingGlasgow Image
Commenting on the findings from this landmark UofG led study @WillStewNeuro says: ā€˜Although former pro football players had a higher risk of death from neurodegenerative disease, they are less likely to die of other common diseases, such as heart disease and some cancersā€™. Image
ā€˜Looking in detail at neurodegenerative disease subtypes, the study revealed risk ranged from a 5-fold increase in #AlzheimersDisease, through an approximately 4-fold increase in #MND, to a 2-fold risk for #Parkinsons Disease, compared to population controlsā€™ @WillStewNeuro
Read 4 tweets
@RoyalCaribbean just stopped me going on the family holiday we have been planning since November. Why? Because of my disability. #MND Disgusted right now.
Not good enough @RoyalCaribbean. We told you in November that I have #MND #ALS and you decide as I am boarding that I can't go???
1/2 A quick update: @RoyalCaribbean have made a public statement & contacted my wife regarding issues regarding their processes and out of pocket expenses. What have they forgotten? Just as the staff at the dock didn't have the decency to talk to me, @RoyalCaribPR have not either
Read 7 tweets
We are delighted to announce that the first #MND clinical drug trial in Scotland, in over 20 years, has launched! šŸ‘ MND Scotland is committing over Ā£1.5 million into bringing MND drug trials to Scotland, with #MIROCALS being the first investment. mndscotland.org.uk/latest/news/fiā€¦
#MIROCALS is a clinical trial currently taking place in the UK and France. It is testing a new potential therapy for #ALS, the most common form of #MND. The drug being tested is called Interleukin-2, which is already used for some types of cancer.
Now recruiting people with #MND in #Glasgow, who meet the criteria, the study will focus on types of immune cells in the blood, which are capable of influencing the speed at which #ALS progresses. Find out more about the trial here: mndscotland.org.uk/mirocals
Read 5 tweets

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