For the month of May, ALS Awareness month, I’m doing my best to chronicle what it’s like to have, live with or care for someone with ALS. Although many of the difficulties, thoughts and complications addressed here are based on my personal experience, I’m including the experiences of other PALS (People with ALS) I’ve known personally, online or otherwise, for a more accurate portrayal of the typical PALS. While this is not necessarily my story of life with ALS, it could be yours, in the blink of an eye…or, the twitch of a muscle.
I just saw Angela Lansbury being interviewed by the local TV station news (WRAL-TV5), along with the president and CEO of the ALS Association. If you don’t know, Miss Lansbury lost her sister to ALS in 1987. One thing the ALSA president said caught my attention. She said that “Even though there are only about 30,000 people in the US with ALS at any given time, it’s more prolific because the short life expectancy (2-5 years) means more people die of it than most other diseases”. Never really thought of it that way.
While we’re on the “forbidden subject”, why is it that most people with ALS decide not to use mechanical ventilation, feeding tube or other life-extending measures? Are they “giving up”? Do they care more about the burden it would be to their family/caregivers/friends? Is it the expense, reportedly around $200,000 a year for most PALS? Are “spiritual” or religious PALS more or less likely to deny life-extending measures? I’ve heard people say the acceptance of getting a feeding tube or ventilator is like an admission that the disease is in control, thereby “breathing life” into more progression. On the flip-side, most ALS clinics preach that the PALS get the interventive measure before it’s actually necessary. So, which attitude is more in-control? Is it ultimately about being in or losing control? What about the rate of progression? Or whether or not the disease is genetic, affecting your family for many generations? The answers to these questions are as diverse as the many different ways ALS affects different people.
Because I have only limited functional use of one hand, I use 
Thank you for having this site. I have a mnd, not sure if it’s als yet, but odds are that it is. So far in my speech, swallowing, chewing. It’s hard to describe what it’s like. Just trying to life each day to the fullest, and not give up. Cathy
Hi Cathy,
First off, I hope it’s something else!
Regardless of the diagnosis, live life each day to the fullest – and never, ever, ever give up! You will find the courage to do it that you didn’t know you had, Cathy. It is there.
Be open to receiving help and support from others. That’s been the hardest thing for me. People are so wonderful in the way they respond. In a way, ALS has opened my eyes to the manifestation of God’s abundant grace and beauty in His handiwork like nothing else could.
You didn’t mention where you are located. I am in the US, in the Hampton Roads area of Virginia. We have more than our “fair share” of ALS, statistically speaking. So a few of us are trying to figure out why! We are also involved with ALS Association to help them raise the money needed to fund research – and to help PALS in a very hands-on way with their ‘loan closet,’ grants for caregivers’ respite, transportation voucher, hospital beds, occupational therapy – and much more. They do a lot with the money they receive – so I highly recommend people donate to ALSA.
Though I will be using a speech synthesizer to do it because I can’t talk anymore, I am giving the kick-off speech at Hampton Roads’ 2010 Walk to Defeat ALS on October 3rd. It will be on the Oceanfront in Virginia Beach. We are expecting over 9,000 walkers. As I said earlier, we have more than our share of ALS (as well as other neurological disorders) here. So many lives here have been touched by ALS.
I have a couple of suggestions for you – wish I’d known sooner… if you think you might have ALS, contact the ALS Assn. chapter near you and ask them to help you get in touch with someone who can help you ‘voice bank.’ That way, if you need to use a speech synthesizer later on – your synthesized voice will sound like you ot a very great extent.
FYI – the Holodesic Solutions URL is a very small group of people. We do business intelligence work — no, not spying, LOL. We calculate and analyze results with specialized tools called BI tools. We have a project going on related to ALS and other neurological disorders – but have not updated our web site yet. So be sure to watch for the changes.
Here is my email address – feel free to contact me for my lessons learned if you think it will help. PatMurray12@juno.com
Again, I hope what’s bothering you is not ALS! But if it is, please don’t despair. Just write and we can chat online.
Hugs,
Pat Murray