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texgrl

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Houston
hello. i posted a hello post in the new members area, but i have some questions about progression, etc of ALS.

a brief background about myself and my family. my mother in law was diagnosed with als around August.

She apparently began having symptoms maybe around March from the best that we can tell. My husband and I lived about 5 hours away from his parents, so we didn't know anything was going on until right before she was diagnosed.

we saw them in April for a wedding, and at the time, she or my father in law didn't mention anything was going on. She had no real noticeable symptoms at that time, except that now that i think back, she spent alot of time sitting down. We saw them again in July--at that time, she could still walk unassisted, but she had a limp that she explained away as what she thought was a hip problem. i helped her get an appt for an mri, etc, and got her in to see a neurologist who first brought up ALS at that time--this was the beginning of august.

She and my father in law now live with my Husband, son and I in our home. She can walk very short distances, (from the bedroom to the bathroom) with a walker, and it is a snails pace, and with much effort. she now has alot of weakness in her arms, and most of the time has to use a cup with a lid that is spillproof because of the weakness.

we had an appointment at the Baylor Neuromuscular Disease Center two weeks ago that did not go well. There were several patients there who were at more advanced stages of the disease than she was, and frankly, it was terrifying for her. She had a meltdown when a Bi-Pap was suggested and we utimately left the center that day without doing half of what we had came to do. She is very adamant that she NEVER wants any assistance with breathing, etc. My husband uses a C-Pap at night and she still won't consider using the Bi-Pap.

All we have been told by the doctor is that she seems to be progressing "fast" but we still really have no idea what that means as far as time goes. what does fast mean?

I don't think until my husband and I were at the Neuromuscular Disease Center that it really hit home with us what lies ahead........I mean, we knew what ALS meant, and what it does, but until we saw people more advance than her, we just didn't "get it".

i'm not sure she's really gotton her head around it yet. She sent off for a hair analysis to see if she was deficient, etc in any areas vitamin and mineral wise. She's always been a big anti-doctor, pro-vitamin health nut kind of person (aside from the fact that she smokes like a chimney). Of course with this diagnosis, she is really down on doctors and said that no one can help her, etc, and i think holds some hope she can find the perfect vitamin to heal her.

my husband already suffers from depression, so this is really taken a toll on him, and this is just the beginning. I already see the symptoms of depression in myself, and I'm to see a doctor about that today. Some days are good, and I think I can handle it and be there for her, and then there are some days i spend 4 hours in my closet crying. How can i take care of her when i can't take care of myself some days?

i live in the Houston area, so i know i need to find a support group, but i know that she won't go, i don't think my father in law will go, and my husband is questionable at best.

I don't know where to go or what to do or to expect and I'm terrified this is going to tear my family apart. I have a 14 year old son who "seems" to be ok so far. he's given up his room, which is a big deal for a teenager, and he shares my office with me. (i work from home)
 

Icanmanz

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Joined
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PALS
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Tomball
Hi texgirl, welcome to the forum. Wish you didn't have to come to us under these circumstances! I must let you know, you came to the right place for help and support. This forum consists of a lot of caring folks. All you have to do is ask the questions, and somewhere along the line you will be getting some answers. We have quite a few folks that are veterans (ooops!), and have been here for quite some time. They are the best, so dpn't feel like a stranger.
Let me tell you a little bit about myself. My name is Irma, and I live in Tomball. We bought a house here 5 years ago, prior to that we lived in Houston for about 40 years or better. I still consider myself a CAL. ALS hit home on March 29, 2006. My son Rudy, then 37 years old was diagnoseded with ALS. I cannot describe the way I felt when he told us what the docs have told him. I didn't know anything about ALS then, but when I looked it up on the net, I felt like dying. It took a great toll on me. It was Dr. Appel that diagnoseded him here in Houston. My son passed 15 months after diagnosed. He was 38. If you read my prior posts you will see what took place during those 15 months!

Okay, about support groups, there are 2 locations that I know of. The one that we used to go to is at Spring Woods United Methodist Church, 1711 FM 1960 West, between I-45 and Kiykendahk--this one is held on Tuesdays at 6:30 pm.

The other one is at 505 Bering Drive, 3rd Floor, North of Woodway, between Woodway and Chimney Rock.

Whereabouts in Houston do you live? How old is your MIL, if you don't mind?

I hate to tell you this, but it is going to be a hard and sad journey. All we can do is take it one day at a time, and yes, lots and lots of praying. May God bless you all. Keep us posted, good luck.

Irma
 

texgrl

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Joined
Oct 23, 2007
Messages
39
Reason
Loved one DX
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US
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TX
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Irma,

god bless you for answering me. this morning has been a bad morning. its seems like one of those days i could spend hours in the back of my closet crying, but i have a doctor's appointment today, so i have to pull myself together and go, so i guess that is a good thing. its with a psychiatrist, so i know i have to make it, i need it.

my mother in law is 66 years old. She is/was seeing Dr. Kwan. right now she refuses to go back to the neuromuscular disease center, at least to the clinic portion. she is refusing all of that care. Dr. Kwan has said he would see her alone outside the clinic so he can manage her meds and care.

she has finally agreed to let Linda Richardson from the ALS society come out to the house, but she is so pessimistic about everything, i'm not sure how that will go. i reached out to Linda after I met her at the clinic.

we actually live in montgomery, on lake conroe. the spring location sounds pretty close. i may see if my husband wants to go.

He and I both need help just coping. He is barely hanging on to his job right now. he already suffers from depression and anxiety, and all of this has just increased it all. He and I both wonder how he can help his parents get their affairs in order and manage to keep a job in the meantime. they still have a house in north texas that needs to be cleaned out and sold, but where do we find the time except on weekends? his work has been semi-supportive----they've said they would give him time to take care of things but still he worries that he's walking a thin line on keeping his job.

the hardest part is not knowing how much time we have with her. There are so many things we want to do....
 

Icanmanz

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Messages
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PALS
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Tomball
texgrl may God bless your family. I know exactly what your family is going through. I will be praying for you guys. Bless your MIL. How many kids does she have?

You live so close to us! Small world! I live real close to Hooks Airport, I am sure you know where that is. Yeah, I know about Dr. Kwan. He was my son's doc, too. As a matter of fact I was going through my son's cards of sympathy just 2 nights ago, and there is one from Dr. Kwan! I know Linda Richardson, too. She is a real sweet lady! She has a big heart of gold! I love that lady! When you see her, or meet her, ask her about Rudy Cantu and his mom Irma. Let her know that we met online on this forum. She is so sweet. Stay close to Linda, she is an angel. My son loved her to death. Sweetie, I am already crying. I want to see Londa, or talk to her, but I am afraid. I am so afraid! I gotta quit typong, I can't see! Need to run to the bathroom, and wash my face. Iam actually CRYING! God bless you, dear!

Irma
 

texgrl

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Oct 23, 2007
Messages
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Houston
Irma,

I'm sure that Linda would love to hear from you.

She is coming to the house this Thursday I think. I will let you know how that goes. I'm looking forward to seeing her.

My in-laws went back to north texas to visit with her step-mom and pick up some things from their house, so we have had a much needed breather for a couple of days. They are coming back this morning.

I love Dr. Kwan. He is so kind and sympathetic. So many people when they hear my MIL has ALS i think really have no idea what it means. Someone my husband worked with actually said "this thing with your mom" like it was no big deal and some inconvenience for them. I lost it and made a couple of phone calls and gave several people a piece of my mind and let them know it was more than just a thing. I think I'm going to send the dvd from the ALS society so they have it at his office. I am continually shocked by the selfishness and self-centeredness of some people and I try to think back in my life and see if I have been that way in the past.

Yesterday was a bad day for me, I really had the poor-me's, but today seems to be a better day in comparison. there's nothing like a good nights sleep and an afternoon with a girlfriend to cure the blues.
 

Icanmanz

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Tomball
Hi texgrl! God, here it is midnite, and I just got on the net. I spent the whole day in the big city of Tomball!LOL! Naw, I went to the bank to pay my mortgage, then I hit the stores! No big deal, just looking for specials! I hope everything falls in place for you guys. It is so hard when ALS hits home. The folks that your husband works for, how dare they? I know------I know what you're saying, a lot of these folks do not know what als is. I didn't know! I knew of Lou Gherig, but never tried to look into it. What I meant by Lou Gherig, I am talking about the very person! Lou Gherig himself, but I knew nothing about his illness. Gosh, I am beat! It was sooooo windy today! I'll catch you tomorrow, friend! Tell Linda hi for me, and please let her know that I put in a GOOD word for her! Tell her I still miss my baby. God bless you!

Irma
 

texgrl

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TX
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I hope Linda is coming today. My inlaws got in about 6 last night and said they had to call Linda to make sure she could make it today. I guess they were supposed to call her earlier this week to firm up plans. they are big procrastinators, but they did need that time this week to go to their old house and pick up some stuff, and make some decisions about what stays and what goes. they were in good spirits when they came back last night.
 

brooksea

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tex,

Very sorry to hear about your MIL. Irma is right, it will be a hard journey for all involved, but hopefully you will find support through the ALS Association. Are there any other family members that can help out?

I'm afraid your husband and your self will find out who your true friends are, as people just do not want to deal with an "ugly" disease. The strong ones will be around to help and support you emotionally.

Can your husband take a Family Medical Leave to get you in-law's house on the market? It does sound as if your husband's boss at the very least needs to be educated on ALS so that he and your husband's co-workers can be more sensitive and even helpful.

Hang in there! You are a great DIL to be helping out like this. Hope your son weathers all of this well.

It will take some adjustments, but after the shock things will get a little better as you learn to deal with ALS.

Good Luck! Hope you get some help from your doc.
 

texgrl

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Loved one DX
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TX
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Houston
CJ-

you probably saw on my other post in the new members section, that we really have no help from immediate family. My husband's aunt and uncle live close, but they aren't really able to help as his uncle just had a stroke and is recovering himself. my husband's cousin's wife is a research nurse and she has been a godsend thru this all. she has went to the doctor's office with us, and she is able to say things in a clinical way that has really helped everyone start to accept what is going on.

my husband probably could take FMLA, but we can't afford for him to be off of work without pay, and i'm assuming that is what it would be. after my phone call letting a few people have a piece of my mind, they pulled my husband aside, and changed who he reports to, and said that they supported him in whatever he needs to do. (we will see if that stays that way.) He is about to have to start traveling to conduct some training seminars, and he is really stressed out about leaving. i wish he could take off and get everything taken care of. the house is a 5 hour drive away, and as it stands we would have to drive up on weekends, so you can do the math about what "real time" we would have to get things taken care of. its overwhelming. if you could see how much stuff is in the house you would understand why i almost pass out thinking of it.
 

Icanmanz

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PALS
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Tomball
Oh texgrl. My heart goes out to you and your family. Your dear husband, I can just imagine the heartbreak. It is so hard when you get such bad news about a loved one. In your post you stated that your husband was just going to start traveling to conduct some training seminars. I pray that God gives him the strength and peace of mind to do so, because als is so horrible. When my son came down with that disease it affected the entire family, I am talking about cousins, aunts, uncles, jeeez the whole tribe! My son touched a lot of people, he was so sorrounded by love. How I miss him.
texgrl, I am praying that your husband's company open up their hearts. I am sure they will. This disease is so bad, whoever does not reach out when it comes to something like this, HAS NO HEART, and believe you me, God sees everything!
Let me know texgrl, how Linda Richardson's visit went. Are you planning on attending the support group meetings at Kuykendahl and 1960? That would be the closest one to you guys. If you start going there, there is a lady named Gretchen, she is a CAL to her PAL husband. She is a sweetheart as well. Such a jewel. She is the one that gave us all the info to Memories of Love, and they flew my son, his little son, and fiance to Orlando, Fla. (Disney). Let me tell you, he was sooooooo tired, but he still went, bless his heart. They flew him there on May 3 or 4, 2007. A month later my baby departed. I cannot understand why these illnesses strike the good hearted. I only have one son left. He lives in Houston. He is a darling, too. Guess what he did Monday? He surprised me with a darling Dodge Caravan. I love it! I cried when he handed me the keys, I could see his brother watching from up above. Dear friend, I am out, this is lengthy enough! Al is going to come after me with an ax! LOl! God bless!

Irma
 

texgrl

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Oct 23, 2007
Messages
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Loved one DX
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US
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TX
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Houston
Irma,

You are so sweet, I hope you are enjoying your new wheels!

yesterday's visit with Linda was ok.....my MIL is angry about having ALS, so there were some uncomfortable moments while she was here. She had a tirade that all doctors are bad, and that they don't want to help her or anyone with ALS because they wouldn't be in business, etc. it just goes on and on. My husband and I realize we can't change her mind on how she feels, and i understand her anger. Linda doesn't take it personal, I'm sure she's seen it all.

She's working to get another chair that leans back for my mother in law, and a shower seat that has a back support and working to get her Part B instated becuase she was late applying.

My mother in law is wanting to see an acupunturist and i think she will be seeing one this week. has anyone heard of this being a help to people with ALS or is this guy just going to be taking her money?
 

Al

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Acupuncture can help relieve the symptoms for SOME but it is short lived and not permanent.
AL.
 
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