Hi,
My dear friend has ALS, newly diagnosed...It seems like in the 2 months since diagnosis he is losing abilities fast....I know some people progress slower than others, but in a 10 day period he can hardly swallow, speech is very forced slurred and and slow, legs are painful and very very weak, one hand is hard to move and overall reflexes have slowed and he cant drive.
We were told Rilutek would slow down progression...does anyone know how long it takes to work. We are still in the denial phase, crying alot, trying to not think about the grave outcome. It is so sad to watch someone deteriorate physically and sometimes it is hard to know the right words.For now He does not plan on using any measures for food or breathing assistance when the time comes, he just wants to go naturally with no assistance. With his breathing not affected but swallowing is very difficult is it a safe guess that he will end up dying of starvation? Anyone with any thoughts, ideas or help, we all would appreciate it as this is new and we just want to do the right things, and be very supportive.
Thank you

hi ksc

i was dxd with als in 4-02, then lyme in 7-02.

be sure to see a lyme expert to be properly evaluated. no blood test is 100% reliable. please visit the lyme threads and tell what state you live in and you will get good a dr recomended in your area. you are a good friend.

jon

As far as the swallowing goes for liquids you can buy THICK IT or its called THICK and EASY- Its powder you mix with any beverage and it helps patients swallow thin liquids.Also helps if the patient swallows a couple of times before the next sip/bite. Baby fruit in the jars is very nutritious and tastes good. Or use liquid nutrition--boost-nutrashakes-resource-all are high calorie and taste good. I had patients never eat towards the end of their lives and drink 4-5 resources a day for a few years!

I am so sorry. I wouldn't wish this on anyone! To keep up his strength I would get a feeding tube. My Mom did it just to make sure she had enough nutrition & water in her. Losing weight for someone with als is not good. I think of it as a maintainence thing, not end of life issue yet! It did help her keep her weight on. She did use a bipap machine to force air into her lungs. This was as needed at first and again was not an end of life issue. She was still very much with us at that point. I would advice you and him to check into a local ALS association. Get threir videos, talk to the nurse there. They were great with helping us and my Mom. They will even loan you equipment if needed!

My Mom has since passed on but, I was glad for every minute we had with her. As far as end of life she didn't want to use a feeding tube or respiriator and we would have respected that! Tell your friend to distigunish between maintaince issues and end of life decesions!

Good luck to you. check out the ALS association website!

Pam