Feb 16

[alsreliefmucus]

First, thanks for being so patient when it comes to updating a new post for the blog. We were extremely busy moving to the new Lou Ruvo Brain Center, as well as planning for all our upcoming 2010 fundraising events.

However, we would like to bring to your attention a website that is going to help many. Healthier Lungs is a must visit for all caregivers assisting victims of ALS!

Their section, NAC Shows Benefit in ALS Studies is supported with medical documentation and the reason for us posting it here.

In our sessions with caregivers and ALS victims, the above referenced web site was brought to our attention. Again, we feel you will find valuable information. Both links open in new windows, so you can just close them when you are done and leave us any comments, questions, or concerns.

Remember, if you live in Nevada, we’re just a phone call away! See the sidebar for details.

Jan 7

[alsofnevada-events]

For those of you unaware of the fact that there is an entire ALS information website “out front,” we didn’t want you to miss out on the newest fund raising events planned for the new Year!

You’ll want to head to our Calender of Events, but here’s just “taste” of things to come. Whether you live in Nevada or are planning a trip, do see what we have scheduled. Your attendance and support means the world to us, our patients, and our caregivers. And, you get to support a worthwhile cause (1 in 10 families are impacted) AND have a great time:

Get Involved Support ALS!

Get Involved Support ALS!

Stop by the website and see what we’re all about – we are hear to help! Even if you do not live in Nevada, we can assist you to find the best resources for you and your family!

Sep 15

[ketoneburning why fattening up is so important with ALS]

The folks over at ALS were kind enough to let me do a personal post of my own. My mother passed from ALS and the one thing that I wish, besides having her back, would have been to have thought ahead of time about the amount of fat she actually lacked when she was diagnosed. You see my mother was always “watching her weight.” Normally, this is a very good thing, but when ALS strikes being fatter is healthier!

While she could still swallow (eat normally), she should have been eating ice cream, cookies, any and all fat-inducing foods by the handfuls (and we should have made her!!).

The reason is very simple. This horrible disease is going to attack every part of a person’s body. It goes for all the fat reserves first, and then… well there are only muscles and organs left.

The more obese even a person is – while they are able to pack the weight on – the better when it comes to “fighting” ALS!

Having been on fat-burning diets in the past, I KNOW the smell of ketones (fat) burning. It gives off a distinct odor. And as her ALS progressed, the smell was overwhelming. However, by that time it was too late. She had too much trouble swallowing, had no appetite at all, and just couldn’t do it. She just did not have the energy or ability to do the one thing she needed desperately to do… eat!

So PLEASE if you have a loved one diagnosed with ALS (Lou Gehrigh’s disease) and while they are able, MAKE THEM eat, and eat, and eat. The more fat they have stored to burn the better!

This is a horrible disease, and too often we – the caregivers – feel alone, exhausted and totally helpless. Those with ALS, my heart goes out to you. PLEASE follow this advice – eat while you can – fattening rich chocolate brownies with mounts of ice cream, whip cream and nuts. Whatever you can… just EAT. Stop thinking “healthy” and start thinking “I need to pack on the pounds!”

Thanks for reading ( in loving memory to my mother, Maureen Grone).

* * * * * * * * * * *
Thanks again to the folks at ALS of Nevada for letting me post. If YOU have words of wisdom, encouragement, strategies, whatever, feel absolutely free to send your write ups in using the “Have a Question?” contact link on your right. We will happily post your information!

Aug 21

Thankfully, the Department of Veteran Affairs has taken the appropriate action. They now list ALS as a disease entitled to “presumptive service connection.”

This means that if a service member is diagnosed with ALS his or her condition will be presumed to have occurred during or been aggravated by military service and as such be entitled to service connection and full benefits.

An overview of benefits available to veterans, survivors and dependents is available from the VA is included on our website.

Visit our ALS Veterans Information page for benefits and links out to the resources you need.

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