mom's bursts of decline? anyone else exp this?

[juliefitz]

My mom in the last 6 weeks or so seems to have 2 weeks of her symptoms "stagnating" then making a sharp decline, staying the same, declining... For example, the last couple of weeks my dad and I could lift her under her arms from her lift chair (she needs a boost) she could pivot, and make it to her power chair/pottyseat. Suddenly, Friday, we did the "1...2...3 to lift her, and nothing. She couldn't even help a little bit. Now it seems as though her legs are completely useless. At least last week she could help us lift her(she hasnt walked since early summer, just after her diagnosis) now, all weekend, nothing. Her legs seem to be suddenly gone. Has anyone else experienced these rapid bursts of decline? Just as soon as we get used to the new normal, the rug is pulled out from under us.

 

[kylisa]

Unfortunately, we did experience this with my mother. She seemed to plateau for a month or so and then a little something else would go. The last few months she declined at a more steady pace and , finally, the last couple of weeks she lost the ability to hold her head up overnight. I hate that your family is going through this. Love her all you can while you still can.

 

[Al]

Yup been there done that. Time for a Hoyer Lift from ALSA or MDA Loan closet.

AL.

 

[joelc]

The same thing happened to me. I now use a lift for all my transfers. Thankfully we have had it installed already. Don't you just LOVE this disease? LOL.

 

[BethU]

Julie ... I don't really know the medical explanation, but I think it's like reaching the tipping point, or the straw that broke the camel's back. ALS progresses so subtly, that you don't realize you're at your last ounce of strength until it's completely gone, poof, and you realize just how feeble you had been.

My epiphany tonight was just that: this is what ALS' slow paralysis is. You just get weaker and weaker and weaker until... poof. Nothing.

 

[Blackpool]

I agree you just start to adjust to some loss and instead of being able to realax a little poof something else goes.Cals must have a hard time trying to keep up with the changes we as pals can feel what is wrong cals have to guess a lot.Charades anybody?

 

[juliefitz]

THanks, everyone... the "tipping point" analogy is a good one. Her legs were nearly gone and we didnt realize it because we continue to get used to the "new normal" and then they're gone. It makes me realize that the little voice that she has left could be gone tomorrow,so not to take conversation for granted.