Good definition of ALS

[Danijela]

Hi all,

I welcome any pointers/link towards a paragraph or two (something brief) that sums up ALS/MND well.

I am finding it over and over that people

a/ do not engage with my explanation of MND
b/ forget what I tell them
c/ refuse to believe it kills
d/ do not understand any symptoms hence fail to see how our lifestyle has changed

and so on (long list).

When L was first diagnosed I did write to all our friends, guidend them towards resources, publications etc. then explained the condition in my own words...I think it is time for a reminder.

 

[Mick n Ang]

Hi Dani

We have found that some friends live a lot in denial. We thought we had quite a close nit amongst them all and yet now, we only ever see our son and his fiance,(every day if we'd let him he is brill, but he is fully aware but will not discuss it at all) Micks brother calls he has arachnoditus(so is quite poorly himself) and an old army buddie of Micks calls about once every three months or so. My mum tells everyone that he just needs more nerve conduction tests to make him better and that he looks ok to her (don't know what planet she is on) And his mum who only lives two minutes away and passes us to go to church, but calls about once every 6 weeks if she has a chiropodist appointment at he end of our street.
I look at it this way, people deal with things differently and some people distance themselves not because they don't believe or uderstand what they have been told or read, they just don't want too. Unforunatley this disease doesn't seem to give you the time or the energy to reverse this so we don't bother.
Hope Lawrence's FVC has plateaued now and you are all doing ok xx Ang

 

[abbas child]

Hi Dani,

I don't know if this is brief enough, but it is a link I send to folks who don't know what ALS is, because it is a straightforward and non-technical explanation.

Lou Gehrig's Disease (ALS / Amotrophic Lateral Sclerosis) on MedicineNet

Love,
Ann

 

[Katie C]

I kept a blog of Glen's changing condition, circumstances, things we were dealing with. Updated it once a week... sometimes more if there were things going on, sometimes less though friends would fret and e-mail me if I went too long without an update. I then had business cards made... there was a link to my blog on the front, and links to sites with ALS and FTD information on the back. Beyond that... it was then up to family and friends to decide for themselves how much they would educate themselves. Glen's oldest brother never really did get the fact that his brother was dying... but I had other things to worry about.

I guess what I'm trying to say is... give them the resources, but don't waste your time and energy on them.... either they'll get it, they'll find a way to get it or they just aren't going to and you have more important things to worry about!

 

[KC2U2]

Here's how I explained it to friends in my blog:

One of the things that I've learned already is that most people know very little about ALS (Amyotrophic Lateral Sclerosis), heck all I knew was that I didn't want to have it. Amytrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease, is a progressive and fatal neuromuscular disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without the support of a ventilator. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. See, now you know why I didn't want to have it and why ALSucks!

 

[BarryG]

Here is what is on my ALS walk website

Amyotrophic Lateral Sclerosis, ALS, is also known as Lou Gehrig's disease, after the famous American baseball player who died of ALS in 1941. ALS is a progressive and ultimately fatal neuromuscular disease. It causes nerve cells to degenerate. These nerve cells control movement by sending electrical impulses to the muscles. When the motor neurons degenerate, the muscles weaken, resulting in paralysis. ALS is a progressive, fatal, neuromuscular disease, which has no known cause, cure or drug therapy of consequence. Individuals who are diagnosed with ALS do not typically survive beyond 3-5 years. This devastating disease slowly robs the individual of the ability to walk, talk, and ultimately, to breathe

 

[Danijela]

Thanks everyone, as ever very helpful. D