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texgrl

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my mother in law was diagnosed with ALS August 24 of this year......My husband and I moved her and my father in law in with us as soon as she was diagnosed. she is primarily wheelchair bound except for short trips back and forth to the bathroom with a walker. She has taken to using "sippee cups" because she is having problems holding things without dropping them.

I've noticed the past week or so she has been coughing more. She is a big vitamin person, and just a couple of days ago she started using a detox supplement, so i think part of what is going on with the increase of phlegm is partly the detox, but i think its also a progression of the disease.

She is also seeing a chiropractor who i think has made some outlandish claims that he can help her. She is not very accepting that she has this disease and is very angry at the medical profession in general right now, and just feels that no one will help her. She has rejected all help from the ALS Center in Houston, and is very adamant that she doesn't want any help with breathing ever, and that includes a bi-pap.

Yesterday evening, after going to the chiropractor, she was unable to get up from her chair to stand. her fasticulations were very bad in her legs---up until then, i had never witnessed them. She became very upset and was crying---this is the first time i've seen her cry as well. She refused to let any of us help her up, and said that every day she is weaker and weaker, and she is so angry. We were all at a loss as to what to do. She finally got angry enough and managed to get up.

She seems a little better today, at least as far as her spirits i think, but I'm at a loss.

does this sound like the disease is progressing? it does to me, but i don't know a whole lot. She was still walking unassisted in July, and now can only manage a few steps with the walker. i'm really scared about how fast things seem to be going. Is this fast? is her refusal of any help going to make this all go faster?
 

brooksea

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tex,

Her refusal isn't going to make it go faster, but bipap or peg could help her last longer. PALS are so different in how the disease progresses. Sorry she is having such difficulties so soon.
 

texgrl

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yesterday was a better day. I think part of her problem Monday was fatigue. Its still hard to see her struggle with acceptance of what is going on. I wish i could just stop it from happening to her at all.
 

CindyM

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So do I, texgirl! So do I. Cindy
 

paula-jane

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hey texgrl,

I'm sorry to hear about your mom, she sounds as tough as my mom.

I do not respond very often on this forum... but, I thought perhaps I might have some insight.. who knows.

I've learned (eventually) to let my mum take the lead on this disease. It is different for everyone and prognosis/progression can only be estimated. In my opinion, if your mom was walking unassisted in July and is now dependent on walker/wheelchair... then she is progressing. This disease runs in one direction, it might plateau or pause for a bit, but, it does not stop. Acceptance is a personal thing and we each handle it in our own way and in our own time. Waiting for someone to accept what is happening to them (some do.. some don't) is a certain source of frustration and anger mixed with heart-breaking compassion for your loved one. When acceptance comes... you will see.. it was worth the wait... patience is key.. it's a very tough road. You should try to get as much information from your doctors as possible and ask as many questions until you have an understanding of ALS. As for your mom letting people help... this is a dignity robbing disease and our natural ingrain for survival means that we fight. It's a little used primal coping skill when faced with the knowledge that we may lose control of our bodies and die. We are our own best advocate.. ALS won't change that, and nor should it. Perhaps you can let your mom do for herself so long as she is safe. Eventually, she will not have a choice and she will let others do for her.
There are some great manuals out there for living with ALS and caring for PALS. My mum's first symptoms were Oct/06, diagnosed Mar/07 and at present she is in the very last stage of this disease. My mum has an extremely aggressive form of ALS and has not had a single plateau or pause. Acceptance for her was about 2 weeks ago. She fought the entire year... and now she is tired. I don't want to lose her and I cherish every moment.. I hate ALS, but, love her enough to respect her chosen path and stick with her until the very end. ALS has taught me so much about the human spirit. I feel honoured and incredibly hummbled to be able to love someone this much.

Take care of yourself throughout this... I've learned it is very important to try to have as balanced a life as possible while trying to look after someone else. It is not easy.. not at all.. but, it's very, very important.

Paula.
 

brooksea

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Paula,

Thank you so much for sharing your experience with your Mom with us. That was very insightful.
 

Al

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Paula. I knew you were a special young lady when we met for a short period of time at the clinic. I hope things go easy for you and your mom.
AL.
 

MamaSara6

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That was very well put, Paula. I never understood why Mom was so stubborn about accepting help and using the tools that were available. I was very frustrated at times. But she had the very aggressive form, like your mom, and only lived 13 months from the onset of symptoms. In fact, it is exactly one year ago today that I went with her and my sister to the MDA clinic in Oklahoma City for a second opinion and were told that she "probably" had ALS. The disease moved so quickly for her that she never had a plateau of more than 3 days. She never had the opportunity to get used to a certain phase before she lost some other function. By the time she accepted that she needed help, like the Dynavox, the opportunity to use it effectively had passed. Bless you for being so understanding where your mom is concerned. Like Al, I hope the last phase is easy for you both. As easy as it can be, anyway.
 

paula-jane

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I'm sorry texgrl... I meant your mother in law... but, the sentiments are the same. I think you have done a very beautiful thing by moving them in with you. I do have a heap of knowledge and experience for coping through this disease as a caregiver. Please feel free to PM or ask here.
 

texgrl

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Paula,

thank you so much for your reply. sorry i havent checked in lately

Monday we were all eating supper and my Mother in Law got a little choked and coughed for about 10 minutes. It was pretty scary. That is the first time that she has actually got choked, she's mostly been clearing her throat alot... She said it wasn't the food, it was the phlegm..........my husband and i were both upset by what we saw. We are so afraid this is going to be the last holiday season we have with her, so we are gearing up to make it a big occassion.

I try to keep her occupied helping "supervise" and give me advice on different things.....rearranging the furniture...helping to plan out decorating for christmas, planning thanksgiving, etc. I don't want her to sit and dwell on what lies ahead.

The only person she will let help her is my father in law as far as the bathroom, bathing, etc. I fix all the meals and do all the cleaning, etc, but as far as personal care, its mostly him. we went to the museum this weekend, and i had to help her in the bathroom, but i knew she didn't want me to, but it was a public restroom, so she had no choice. I worry about him because he never takes a break. he refuses to leave her. he isn't sleeping much, and i have to make him eat.
 
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