Please Help. I don't know what to expect.

[pgatto]

Hi. My mother was diagnosed with ALS a little over 2 years ago. Being a stubborn woman, she has refused to acknowledge that she may have it. It started with us going for a walk late in the summer of 2009. She walked about a block and couldn't go on. Complained of severe cramping in her right leg. Since then, her foot has dropped, and has almost lost all feeling in both legs. Has been using a walker for a good year and and a half. Last week, she took a terrible fall and had to be taken to the emergency room. Complained of having lost all feeling in both of her legs. They transferred her to a rehab center a couple days ago. She is having a very hard time swallowing and has lost an enormous amount of weight. Her legs are the size of a child. Her mental alertness goes in and out. Her breathing also seems to be labored. I don't know what to expect. Could rehab help bring her out of this?

 

[momap53]

I'm so sorry to hear about your Mom's problems. It sounds like she is in trouble right now. Since she was in denial I expect that the answers to my questions will be "No"
Was your Mom being followed in an ALS Clinic?
Did she use BiPap?
Do you know what her wishes were concerning the placement of a feeding tube? Any idea what her FVC score is?
I'm so sorry you're having to deal with this.

 

[pgatto]

You are correct. "No" to all of the questions. I also don't know exactly how to bring up the subject of a feeding tube. She's very scared right now. I don't know what a BiPap or FVC score is, but I'm going to research them on the internet. Thanks very much for responding.

 

[Ms. Pie]

Loss of feeling is not a symptom of ALS though. She may have some problems with her spine along with ALS. Get that checked out as well. As far as bringing up the subject of feeding tube or bipap or any type of treatment, her doctor or Neurologist should be talking to her about that. I'm surprised that they haven't.

Also, you and she should talk to an attorney about a living will with medical directives so everyone knows what your mother wants if she is unable to speak for herself. Do it ASAP so there is no question about what your Mom wants.

 

[Ms. Pie]

Went to moderation. I talked about what needs to be done as soon as possible regarding feeding tube consultation and medical directives.

 

[momap53]

Ms pie has some excellent advice! Get these things taken care of immediately!

I suspect she hasn't been going to see even a Neuro doc since she got the news has she?

You can search our archives for discussions about some of theses things. Another good source from a nurse who has ALS is at: ALS from both sides dot org
She has a good primer on BiPap use.

Good luck, sounds like you have a whole lot of catching up to do. We'll help however we can. Just ask.

 

[notme]

If the trouble with swallowing was very sudden, are they sure she did not have a stroke?

Did she lose feeling, or are her legs simply too weak to hold her up any longer? The rehab place can help show you how to help her move from a chair to a wheelchair, as I am assuming g one will be. Ended.

A bipap is a machine to help with breathing. You can see some pic tures on u tu be. The person wears a mask over their nose or mouth and nose that aids in breathing.

A PEG is a tube that allows your mom to be fed through it. It's surgically placed directly into the stomach. A person can still eat, even if they have one put in. It is a quick procedure, but best done before ome has gotten too weak.

FVC are the values having to do with how well the muscles are able to work with the lungs, basically. ALS affects voluntary muscle, including the diaphragm, which lowers the FVC. when that number drops, doctors order a bipap. Medicare will pick up the tab if the numbers are below 50% I believe. Many feel the bipap should be used earlier. ,y FVC is in the 70s, and my doc suggested it. An ALS volu nteer place sent me one. When the FVC is low, a person is not getti g enough oxygen to their brain and organs. They may wake with headaches and have a lot of fatigue. Untreated, this will only get worse. A bipap is 100% non-invasive.

If she IS able to walk with a walker, they should have given her a device called an AFO. This will help prevent falls. I believe Ms. Pie has a pic of ome in her album, but there are pics of them all over

If she is not being followed at a clinic, she certainly should be. Her mental alertness could be 02 levels, or something connected to ALS called FTD. It is a type do dementia seen in some with ALS. Again, if most of this happened overnight kind of thing, something else might have happened, but she certainly needs to be seen ASAP by an ALS aware doc.

We are always here to help.

 

[notme]

Darn it, I tried so hard not to trigger moderation. I answered with a lot of info. Check back for it

 

[eibhlin]

Hi. My mother was diagnosed with ALS a little over 2 years ago. Being a stubborn woman, she has refused to acknowledge that she may have it. It started with us going for a walk late in the summer of 2009. She walked about a block and couldn't go on. Complained of severe cramping in her right leg. Since then, her foot has dropped, and has almost lost all feeling in both legs. Has been using a walker for a good year and and a half. Last week, she took a terrible fall and had to be taken to the emergency room. Complained of having lost all feeling in both of her legs. They transferred her to a rehab center a couple days ago. She is having a very hard time swallowing and has lost an enormous amount of weight. Her legs are the size of a child. Her mental alertness goes in and out. Her breathing also seems to be labored. I don't know what to expect. Could rehab help bring her out of this?

I sympathize with you. No rehab can help. The nerves don't talk to the muscles in ALS. She could take riluzole, which extends life very modestly. I've been diagnosed since August 2012, and I have the same symptoms as your mother, except I've had a lot more falls. My neuro gave me an anti-seizure medicine for muscle cramps, so she could try that. I take Lyrica for itchy skin already, and my cramps are not too bad. I also stretch a lot. Good luck. It's hard to be a caregiver for something as bad as ALS.

Eileen