ALS Is considered to be a progressive disease that attacks the neurons, or nerves, in the brain and spinal cord, ultimately killing them. This means messages gradually stop reaching muscles, which leads to weakness and wasting.
ALS can affect how you walk, talk, eat, drink and breathe. This results in difficulty speaking, swallowing, and eventually breathing, the consequences of which can be fatal. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in the same order for that matter, and these are just some of the things I’ve learnt talking to folks who have the disease like Pete or who are trying to combat it on a day to day basis.
Although there is currently no cure for ALS, symptoms can be managed to help achieve the best possible quality of life.
We however want to turn the dial forward and work with, and challenge the great physicians, clinicians and researchers out there in both traditional and non-traditional areas of medicine and food science “to connect” quicker, in the race to defeat the disease, in fact quicker than the disease seems to “disconnect the neurons” in a person who presents with ALS, and whose quality of life quickly unravels!
We the friends and the families of people with ALS want to connect and work with you in this space and help in any way we can besides the funding that you so often require.
1) The history of ALS
We aren’t the experts in this field, we are friends and family first and foremost, of Pete and all those other folks who have been diagnosed with ALS/Lou Gehrig’s as it’s known in North America or Motor Neuron Disease in other parts of the world. Here’s what we know from the great and the good who are advancing medicine, science, and nutrition every day and whose efforts to combat the disease we are forever grateful for – but please can you “connect the dots” faster!
Having searched through the net and a variety of sites, the disease seems to have been first described in 1874 by a French Neurologist called Jean-Martin Charcot, but who’d have thought that by 2015 some 141 years later we are still struggling to come to terms with dealing with the disease, not least the fact that there is still only 1 medication that has been approved for treating ALS (riluzole) and the evidence for its effectiveness isn’t great. It prolongs life for 2-3 months, and it was approved 21 years ago! The stem cell researchers have at least 9-10 interesting trials underway in one form or another presently, while given the advances in genetics and patient centric healthcare it may also mean that science based personalized nutrition is now also possible in order to combat the disease. Added to that list we have a number of promising therapeutics being developed by the Pharma world… and a variety of ways to treat the disease from more natural means. But how long will it take to “connect the dots” and make more rapid advances? 2 years, 5 years, greater than 10, it all seems to come down to raising the awareness of the disease and funding the appropriate trials and finding an alternate way to live manage your health that is beneficial to you.
2) How it can affect you
ALS is a progressive neurodegenerative disease that attacks the upper and lower motor neurons.
Degeneration of the motor neurons leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.
It appears that like with Pete the muscles that are first impacted tend to be those in the hands, feet and mouth, though this can vary dependent on the type of ALS that a person has. As Pete explained to me there is hereditary ALS , which can be passed on to future generations that impacts 5-10% of sufferers, and sporadic ALS which makes up the majority at 90/95%, the form that this takes can vary considerably. My friend Pete has the latter, and his symptoms are presently in line with those above so he first had issues with his hands then his feet and legs and now his speech. This is the same guy who earlier this year was out in the front playing baseball with the rest of the fathers and their kids…”don’t take Pete out of the ball game!”, to paraphrase Harry Caray – Pete’s only been here for 49 years, and with a little of the experience that the physicians, clinicians and researchers have if they connect, he may get better.
ALS does not usually affect the senses or the bladder and bowel. Some people may experience changes in thinking and behavior, often referred to as cognitive impairment, but only a very few will experience severe cognitive change. Pete, that’s the good news, my friend, and at the moment you aren’t impacted by that whatsoever and what’s amazing is that you haven’t lost your sense of humor even in the face of this adversity!
3) What’s the diagnosis?
This is an interesting one, as I know all that Pete and Youtaz (Pete’s’ wife) had to go through to get to finally have someone tell them – “Peter you have ALS”.
Why is that you might ask? Well ALS for a start off is classified as a rare disease, the symptoms initially are imperceptible or slight and dropping a cup of coffee a plate or even your child as you try to give them a hug before they go to bed, can all be attributed to a variety of other reasons. Because the disease can impact individuals in different ways there isn’t a definitive pattern to onset in the very early days.
4) ALS facts and figures
Having spoken with the excellent people at ALS Canada while it’s difficult to get an exact read on how many people globally have the disease it’s reckoned that 400000 people globally live with the ALS disease, 100,000 die annually and a further 140,000 are diagnosed with it each year(that’s 384 cases per day around the world!).
It can affect any adult at any age but most people diagnosed with the disease are over the age of 40 – Pete’s 49, he won’t mind me sharing that with you given I’m sharing everything else about what he’s facing :)! With the highest incidence between 50 – 70, though anecdotally I was told of a person presenting in their 80’s… you really have to wonder what triggers the event especially if it’s of the sporadic form?
5) Why do people get ALS?
That’s the question that Pete his family and friends ask, as indeed do the countess other families and friends of ALS patients everywhere. At this stage the jury is out, each person may be affected by a single trigger or a combination of triggers, both genetic and environmental, which makes it very difficult to determine precise markers for the disease. I was only having that conversation with Peter and his mother the other day, but we need to know more and part of this initiative is to work with the physicians, clinicians and researchers globally to advance our understanding of the disease whether connecting the disparate pieces of the jigsaw together, to get a clearer picture of what might repair the neural connectors that are so intent on disconnecting from the very life which they are a part of. If you would like to know more about developments within research, you may wish to refer to our research section and information about the causes of the disease.
Life with ALS
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