Bulbar Onset Decline

[csabados]

My mom has Bulbar Onset and is currently living without a caregiver. I will be her primary caregiver and am trying to learn what I can from several threads for CALS and PALS. Mom is still mobile and is still driving.

My main question now is with walking. Is it walk today and not walk tomorrow? Is it that quick? She has promised she will let us know when she doesn't feel safe driving anymore, but will she know that? Will she be able to make that decision.

 

[affected]

@csabados Well, so many things can affect progression. It can be that quick in some ways, but not exactly. One day walking may not seem too bad, but may be taking so much energy. Next day a fall and everything can change.

Sometimes mobility is worse at different times of the days - on first waking of a morning, or at the end of the day when tired. Chris finally started accepting the wheelchair to come in for his get ready for bed routine as he knew he was exhausted and it would take him 15 minutes just to walk from veranda to the loo.

Driving is a bit of a bug bear for me as I watched my Chris drive well past when he should have and he would say - you need to trust my judgement. There will be no insurance cover if your mum has not declared her ALS to the insurer.

 

[gooseberry]

My husband is more respiratory onset than bulbar. He was diagnosed in May 2014. He stopped driving any real distance in July but will take my son to.school if he misses the bus. He said he didnt feel comfortable driving any longer on the interstate. School is a mile each way and a busy road so walking isnt an option so he will drive him there when necessary but that is about to stop.. Since he has lost 70% mobility in his left arm/shoulder this wont continue much longer.

My husband can walk but the fatigue gets him, yet he does want to use his wheelchair. The stubbornness to give up their control and freedom to the disease can make it very hard but is also.awe inspiring that the pals.keep.trying.

For my husband, things seem sudden but when he really talks about, he has known for awhile he was losing function.