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tanyadee82

New member
Joined
Apr 6, 2010
Messages
3
Reason
Loved one DX
Country
US
State
Virginia
City
Big Stone Gap

Hi. I am new to the forum. My mom started having symptoms around 9 months to a year ago. Her symptoms were headaches, sleeping all the time, and slurred speech. She saw her family doctor several times and he kept telling her she was just tired. Finally, he sent her to see a specialist. The specialist ran many test on her (ct, mri, etc) which all came back good. Couldn't find anything wrong. He almost immediately suggested ALS. After several visits he sent her to UVA Hospital in Charlottesville, Virginia. They diagnosed mom with bulbar palsy but said it may or may not be ALS. After much research on the internet I came to the conclusion that they were pretty much one and the same. She went back a second time (the appointments were about 3 months a part) and they said she hadn't progressed very much. that was good news. One of the Specialist here at home wanted her to get a feeding tube now because she is getting choked a lot, but in Charlottesville they said NO... not until she had absolutely no other choice. Since the diagnosis of Bulbar Palsy, mom has started having muscle cramps and spasms in her legs which pretty much confirms the ALS. I guess so far she is doing pretty good. Worst thing is that she sleeps so much, she just has no energy. Sometimes we understand her speech fairly well, other times.... not so much. Doctors say that the main concern right now is pneumonia. her upper resp. system has been affected so its weak. My mom is 51 and I am 27.... I feel robbed. I know I have no right to complain... some kids never get a chance to meet their moms. It just seems so unfair...... I don't understand why bad things must happen to good people.
 
Tanyadee82, welcome to the forum but sorry that you need to be here. I think that if she is having trouble eating because she is choking on food then that could be a major reason why she has no energy and is sleeping all the time. If she can she should get a peg feeding tube now, it is not a last resort kind of thing it is something that helps us get the nutrition and hydration that we need and helps avoid aspiration pneumonia. If her breathing is bad she may not be able to undergo the peg placement procedure but that is the only reason to not get one.
 
I agree with Barry. If you wait until it is absolutely necessary to get a PEG, that is too late. Once you fall behind it is so very hard to catch up. Just because you get a feeding tube, you do not have to use it all the time. Keeping weight on our PALS is the number 1 thing we can do to slow progression. Hugs Lori
 
Headaches & sleeping a lot? Sounds like breathing problems, too. Somebody needs to get her for a sleep study.
 
Tanyadee,

Sorry about your mom.

If the docs think she is at a risk for pneumonia, then she needs the feeding tube now. The choking on food can cause her to aspirate and thus create an infection in her lungs as Barry indicated. And as Lori said, if her diaphragm becomes weak and cannot support her lungs to begin with, she will not be able to undergo the procedure for tube placement.
 
Dear TanyaDee,
So sorry to hear about your mom. You will go through a whole bunch of emotions as you begin to navigate this road with your mom. The forum members who have given you the health suggestions are critical for your mom. You will need to have some really hard conversations with her about what medical support she does and doesn't want so that you can be her advocate and support. Does she have a spouse or other children that will go this road with you?

Prayers for courage and grace,
Melody
 
Thanks for all of your input. That is what her local doctor told her... that she needed to get it now because if she waited until it was necessary that it'd be too late. However, the doctors and University of Virginia told her no, that she needed to wait. I understand her reasoning. Who would you listen too... small town doctor or Specialist at UVA? Yes, it is very emotional. I pass through them like phases... from anger to hope... to courage... denial... back to anger...

My dad and I seem to be the two that are most involved in the situation. I can't tell her what to do. I tell her what I think and feel, but i have to support whatever she decides. I watched a video on the internet today about a man that progressed very fast and after about 6 months he traveled to switzerland and had a medically assisted suicide. it was horrible, i should have never watched it.
 
I'm sorry you've had to come here with this diagnosis - it's a horrible disease. But there is great support on these forums.

The advice you've been given by your doctor is right - you get the peg as soon as you start to perceive the need. It is not a last-resort thing. Some people never do "catch up" - they are too far gone once the peg is placed and they simply can't catch up. That happened to the FIL of one of my mother's carers.

My mother had her peg put in last December. She got it put in because the weather was getting warmer (we're in the Southern hemisphere) and she was worried about hydration. Initially she didn't have too much peg formula as she was still eating 3 good nutritious meals a day. But as her eating abilities weakened she was easily able to increase her peg quantities and as of 3 weeks ago she had to give up all solid food. Through that entire transition period she did not lose weight or become malnourished. It also became hard for her to take drugs, and we were easily able to start crushing them and delivering them via peg, instead of continuing to struggle with pills and capsules.

As for the fatigue - some of that might be drugs, depending on what she is on. But oxygen is likely to be a factor, so get her breathing and oxygen levels checked out.

My mother has very fast progression, and we find that many doctors and nurses don't understand how fast things can progress. We've had tests done and we're told that no further testing will be needed for 2 months, but the situation then changes dramatically within half that time, so the testing needs to be re-done much more quickly than anyone expected.

sesl
 
Dear tanyadee82,

I, too, am so sorry you have the need to be here. However, there is no better place to be if you are looking for a positive support group and sounding board. I hope you and your father feel free to be as active on this forum as you want to be. These good folks are chock full of information and experience and ready to help at any time.

Our MDA doctor also encouraged a PEG tube before we needed it. It is a blessing we listened. We began using it immediately for water and meds. Hubs has had it almost a year and is now totally fed by the PEG.

Other things you might check into are a bi-pap machine or other non-invasive ventilator. A cough assist machine is a great tool to help keep throat and lungs clean. It can also act as a suction machine when you get in a pinch.

If you haven't checked with the Muscular Dystrophy Association, I highly recommend them. They can be a huge help with many problems or questions. They also have great books on ALS and ALS Caregivers that are a great addition to your library.

AND, love, stay off the internet! Not literally, but there are many beastly clips, films, stories, etc., that lead to depression and devastation. Your mom is lucky to have you. This is a ghastly journey, but you are not alone.
 
Dear tanyade82, first of all welcome to our forum. This is a place loaded with good information, and a place to vent, and make close friends. I cant add anything more to the advice given above. I think a bi-pap will help her a lot with her sleeping all the time during the day. The sleep study is a must, and tell them about the suspected ALS, so they dont go down the route of her just having sleep apnea. That is what happened to my dad. He was not completely diagnosed until he had a complete EMG done. Hang in there, this is a tough road, but you are not alone, and we are always here if you have any questions, or just want to vent hun.
Hugs, Blu
 
Mom has had sleep apnea for several years and had a c-pap machine, although she never used it. :shock: She had her sleep study done last night. They didn't even try her on a bi-pap... they said she had very few episodes and only when she was on her back.

I want to thank you all for the kind words and support.

Also, I will try to stay away from the internet :)
 
Sorry to hear about your Mom. You've found a great place for advise and understanding. The PEG tube really isn't a big deal- really consider getting it done now. Stay strong:grin:
 
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