Mom has ALS :(

[tweedie]

Hello everyone,
My Mom was diagnosed with ALS today and although I was not suprised, we are still trying to take it in. Mom is 80 yrs old and lives on her own in an apartment. I'm not happy with this arrangement, but she's a pretty persistant lady. Right now I'm struggling with how best to help her, when she doesn't feel she needs it. She has foot drop and is quite unsteady when she goes out of the apt. I know she needs time to adjust to this, but I'm very afraid she may fall and she's very small boned.
Sorry to run on but I hope someone else may have some experience to share as to ALS and older people.
All advice humbly(?) appreciated.

 

[sadiemae]

My PALS is young (will be 46 tomorrow) but being unsteady is dangerous. Does she use a walker?

 

[tweedie]

Thanks for your reply sadiemae,
I can't imagine how difficult it must of been to have diagnosed at such a young age! Blessings on your husband's birthday.
I have had a hard time even getting Mom to agree to try a cane. I'm hoping that with some time, she will come to
except that she will need help from a family who love her. Right now she seems to be in denial. She wouldn't make an
appointment at the clinic that specializes in ALS ,as her neurologist has advised. I live 2 hours away and I feel so helpless that
I can't be closer if she needs immediate help. She completely refuses to discuss moving. I want her to be able to remain as independent as
she's always been, but fear for her also. Sorry for going on so long, I worry constantly but don't want to pressure her either and want to respect her wishes.

 

[Rose554]

My Mom was 77 when she was diagnosed with probable ALS in Sept 09. Confirmed May of 2010 at 78. She started with foot drop, in 2008, March 09 got a foot brace, a few months later was using the brace and cane. January 2010 no cane, using brace and walker. June occasionally used the walker but most transportation was with the wheelchair. At this time she is solely using a manual wheelchair. Power chair has been ordered but came in too big...so we still wait...Mom still has good use of her arms and hands. Legs are useless and her speech is nearly gone. She has elected to not get a feeding tube or vent. She does have a suction machine, cough assist and Bipap. Fortunately I was in a position to retire in May and help Dad (who's 82) with Mom. I only live 3 miles from them so that is another blessing. Dad is having difficulty transfering Mom from wheelchair to lift chair to bed, etc and usually doesn't have to do it unless I'm gone. It's just a matter of time before I'll be staying there overnight. My brother pays for a housekeeper to come every other week. Dr has referred Mom to hospice but we haven't been contact yet. In time your Mom will need help, hopefully by then there will have been no serious falls and your Mom will be more opened to help.