Mr.Txgrl here

[pop3]

Well I havent posted in a while so here goes. Mom is still progressing at a pretty fast rate. It still seems like a nightmare to me and I even had a dream the other nith that she came walking in just like normal. Boy I wish that would happen. She is still in a denial stage but I guess I would be to. Christmas was the worst day of my life because mom broke down and she is not the type to ever cry and she cant even hold her emotions now. Kim gave her a present she had asked for some time ago and as soon as she saw what it was she lost it. The whole family, my dad, son and Kim soon followed and we just hugged her as told her we loved her. I dont know what else to do. I am just glazed over now. I wish there was no such thing as ALS.
Bye for now.

 

[Icanmanz]

Hi, Mr.Txgrl! I have been wondering about you folks. Am terribly sorry to hear that your mom is progressing at a fast rate. I know exactly what you mean by "seems like a nightmare to me." Like you, I also dreamed about my son with no als. What a big letdown when you wake out of a pleasant dream into a real nightmare, a nightmare that does exist! It happened to me many a time. Now I see my son as being pain free, he is watching me, and assuring me everything is okay.

As for the holidays, they may come and go, but they will never be the same. When my son was sick, I would pretend I was doing fine, deep down I knew I wasn't. Now with these holidays, I just have to pretend I am having a Merry Xmas. My question is: Who am I fooling? Oh well, such is life, gotta take it as it comes.

I meant to ask you, are you guys going to the Als Support Group meetings on 1960? That is where we used to go.

God bless you folks. Say hi to your wife. Hugs and prayers to Mom.

Irma

 

[pop3]

No we havent gone yet. But I am thinking about. I really need to air my feelings more but dont want to around mom. I dont want to bring her down anymore. How often do they meet or do you have a schedule?

 

[Icanmanz]

Hi! Is it Paul? It's been a while, but I believe I am right!LOL Yeah, about the Als meetings, here in the North area they meet every 2nd Tuesday of the month at 6:30 pm. They meet at Spring Woods United Methodist Church, 1711 FM 1960 West, between I-45 and Kuykendahl, park in lot at back of building, enter business office door. Have you folks met Linda Richardson yet? Are you with Alsa yet? Take care, and God bless!

Irma

 

[pop3]

Thanks for the info. Yes we have meet Linda. She has actually been out to our house a couple of times and we live way up on Lake Conroe, she is really great. I dont know how she does this type of work. I couldn't handle all of the heartbreak she has to see all the time. But I guess someone has to be there to do it. Thank God for people like her.
Bye for now.

 

[Saubier]

Dear pop3,

Get your doctor to prescribe DM and quinidine for your Mom. I have bulbar ALS and I couldn't work without it. It enables PALs to control their emotions better.

 

[pop3]

I have heard of the quinidine but what is the DM? Dr. Kwan sent us a prescription for Lexapro for her depression but she has not wanted to take anything like that yet. She told my dad, what is the use in trying to be in a better mood with her condition. She is so hard headed. She is also very proud. So what makes common sense to most of us does'nt hold true all the time with her. Her breathing has gotten very shallow here in the past week and she isnt going to have any breathing intervention.
So now we are facing the fact that she might just stop breathing and we are not sure what to do. HELP!

 

[Icanmanz]

Hi pop! Are we having Spring kinda early or what? I have been running my AC because of the humidity! Okay, first I'd like to tell you I am sorry for your mom's deteriorating condition, and her not wanting to get on certain meds, and getting whatever she needs is not helping at all. Let me ask you, has she had the peg yet? Is she getting any assistance with her breathing, such as the bipap? Has she reached the stage yet where she has to use the sucion machine? If not, I do not see how in the world she is doing it. Can she still get around a little bit? Sorry for all the questions. One more, can she still chew, and swallow? This is so hard on the family. You feel so helpless when something is being suggested by the docs, and the patient flatly refuses it. We were fortunate (not really b/c als hit home)because our son went with whatever the docs suggested, and this damn illness still took him unexpectedly! The unexpected always takes place with als, and it shocks the #&#$ out of you. It leaves you dumbfounded. May God bless you, and your family. How is your wife. She has not been online lately. Tell her I said hi, and God bless!

Irma

 

[Saubier]

DM is dextromethorphan (cough medicine)

 

[pop3]

Moms resisiting

Irma, no problem about the questions. She can stand long enough for us to move her from chair to chair. Taht is about it. She is still eating on her own but she is having a very hard time. She went to see Dr. Kwan yesterday, and from what my dad told me she is nothing but rude to him. The Dr. told her I know you dont like me but I am not going to take it personally.
They have her on an antidepressant and something for her cramps. She would not get on a scale for them or do any kind of test, other than reaction and streangth observations. I know she is not going to use a bi-pap at all. So we are basically stuck with her being resistant to any sort of treatment. She is even getting to the point where she doesnt tell us the truth about how she feels. She is also getting short with us. I think she has a cognitive condition with the ALS.

Irma: I will tell Kim you said hello.
P.S. You are right about the weather.

 

[Icanmanz]

Hi Paul. I am so sorry to hear about the difficulties with your mom. She is probably goiong through a stage of anger, don't you think? The best you can do is allow her some space. May God bless her. I know it's hard. I will be praying for your mom. Take care, friend, and God bless!

Irma

 

[CindyM]

I think she has a cognitive condition with the ALS.

Unfortunately, Paul, that happens from time to time. Seems doubly unfair for a family to have to cope with both ALS and dementia but I have heard of it. I am sorry, if this is the case with your Mom. Cindy

 

[texgrl]

its been a while since i posted but i wanted to jump in and give an update on my mother in law and also ask a couple of questions.

yesterday was my hubby's birthday, and our day began with us trying to get our first cup of coffee down when we heard his mom's screaming and crying from the other room. her muscles are contracting and pulling up when she sleeps so badly that she can't even stand to have you touch her to help her pull them straight. she is on a muscle relaxer, but as i've said before she is very conservative with medications and only takes half doses, etc. my father in law uses a hand massager on her to help loosen up the muscles. sometimes it works, sometimes it doesn't.

she has began having some problems with breathing that are noticeable to us lately. her color is just terrible. she looks very gray.

today she woke with a headache and had it most of the day. she spent the majority of the day in bed, and only just now said that it seems to be subsiding.

her appetite is so low its not even funny. she seems to be living on yogurt and applesauce. refuses bread and pasta and rice. when we can get her to eat meals with us, its just meat and vegetables. i've given up arguing about it because she is so stubborn.

my biggest question right now is the headaches---is that from lack of oxygen?

Dr. Kwan believes and so do i that she seems to have somewhat of a cognitive problem. i've noticed that at times she will laugh almost uncontrollably, then other times she seems so angry and mean spirited.........anyone else seen this?

 

[Icanmanz]

Hi, txgrl! Wow, what a coincidence! So yesterday was Paul's birthday? Yesterday was my birthday, too! Tell him I said "happy belated birthday." My son, Shannon asked me to go out and eat, but I didn't go. Shame one me! I told him I wanted to watch Greenbay/New York play. He said okay. He knows I love my football, so does he! We are going at a later date!

I am so sorry to hear about your mom's condition. Wish I could help you, but I really don't know what causes for these Pals to have these tantrums. Each Pals is different, my son was on the quiet side, kept quite a bit to himself, because he did not want me to worry. Maybe if you ask her doctor, he'll come up with something. God bless you guys!

Irma

 

[texgrl]

Kwan prescribed new muscle relaxers and an antidepressant. she is sporadic at best at taking the antidepressant.

i'm most concerned about the headaches. i know its probably from high co2 or low oxygen--maybe that is the same thing, i don't know. her stance hasn't changed as far as any breathing assistance goes, so i guess there is really nothing that can be done. i do feel she is one of those ALS patients who has the cognitive issues.

its so depressing.