Living with active ALS for nearly 6 years

[summerguy2007]

:smile: I use my VPAP every night. I breathe without difficulty during the day. Some nights I just don't sleep well so I take a daytime nap. I walk with braces for about 350 to 400 ft. per day in my hallway. I split it up into 3 or 4 walks total. I eat well using regular utensils and drink ordinary liquids (coffee, water, beer). It has caused me trouble speaking. I'm hoping it progresses very, very slowly. In general I feel pretty good and remain positive.:smile:

My advice to people who are wondering if they have ALS is to pursue it through medical channels. There are hundreds of diseases that may present somewhat like ALS.

God bless everyone who deals with it daily (like me).

 

[Janie H]

Great additude Summerguy, we have to enjoy our time and do what we can, I have breathing issues but no muscle weakness, I am up most nights and nap during the day. Little scared to exercise ( I get out of breath very easily) I do light housework, God Bless

 

[alsornot]

hey summerguy! how are you today...i am still waiting diagnosis and i am glad i read you story 'living'....i am trying so hard to be positive...with no answers they are sending me for one more test 'evoke potential' to rule out MS...but everything points to ALS...i am mostly concerned with my breathing on any activity is next to nil...i use a cpap at night for breathing but during the day i have to rest ever 5 minutes inbetween doing any light activity...dishes, shower, walking with a walker...you have given me positive vibes! thanks...mindful peace to you...

 

[Christopher]

Hello summerguy. Thank you for this post. God bless you

 

[summerguy2007]

Alsornot, I am very sorry to hear of the troubles you are having. I'm ok and manage pretty well so far. Time will tell, but remain calm and positive. That's all one can do. I plan on living as long as reasonably possible with medical interventions. Then, it's time to leave.