My Mom was just diagnosed with ALS

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tmackenzie

Active member
Joined
Aug 3, 2012
Messages
41
Diagnosis
08/2012
Country
US
State
Michigan
City
Hancock
I am new to this forum, but very grateful to see it. My mom Chris, was just diagnosed. My trouble is... she currently does not have the internet, nor a computer for that matter. I am trying to get her a second opinion in Milwaukee. They just diagnosed her with ALS on August 1st, but they fear she has had it for a year. When I am done with this thread, I plan on reading your stories. I want to learn all I can to help her. I will find out if there is a way for her to get internet access where she lives (in the woods)... I hope via satellite. She would love to be able to read about your experiences. If any of you are willing to write to her (snail mail)... that would make a world of difference. I live 2 1/2 hours away from her and cannot see her everyday. I so desperately want to be with her.
 
If you private message me with her address, I will gladly snail mail her to help her get in the loop. This is a hard journey for all of us. jamiem
 
I am very sorry for your mother's diagnosis, I understand how you feel one of my daughters lives two hours from me and she is having a very hard time with me having als. You didn't say what kind of trouble your mother is having but if she has trouble with speech or her hands they can get a computer mine is a Dynavox also she needs to file for her disability going back to when she started having a problem
 
My mom, since last fall started having trouble speaking clearly. (I always thought it was her medicine). Since Christmas she has lost approx. 50 lbs. She is now having trouble swallowing. She has to use a straw for liquids and have moist food to get it down. Some days her speech is better than others, but for the most part she is difficult to understand. I blamed all these symptoms on her migarine medicine, Topamax (after researching it). I swore by it. She has been on a list of medicine for many years for migraines. The thing that confuses me, is she can walk very fast... quicker than I've seen her walk in years. She was a smoker, quit for 2 weeks, learned of this...started again for a week... and is now quitting. She had the muscle test to diagnose it. She didn't really have very much muscle to begin with, because of lack of activities. She does not work (retired) and just chooses not to get out and walk or do things. She had a phone conference with Social Security Friday and they denied her ANY benefits! How can they do that? She has worked for many (maybe not many, but a few) years?
How do I private message on here? Jamiem, I would love to send you her address.
 
Hello,

You sound a like a wonderful daughter! It's not easy, I'm sure, being so far away from your Mom. I would be happy to correspond with her by snail mail. You can send the address by way of a private message to me.

Hopefully, you can get her internet and a computer soon. This forum has been very helpful to me and I'm sure Chris would like it also, but bear in mind, getting this diagnosis is really shocking, so she may opt to wait a bit before joining us here. I waited a couple of months before actually registering as a PALS, though I did visit as a guest many times prior to signing up and "going public".

Keep in touch.
 
I think this (forum and internet in general) is exactly what she needs. My work email is operated via satellite internet, so I am positive I can get it for her where she lives as well. I want to do whatever it takes to make her Happy, I think meeting people and talking with people will lift her spirits. And if her spirits are lifted, she will fight this. Already I am feeling a little better. I will check back here nightly when I can to get more answers and let you know how she is doing.
Thank you for your kind words. Tina
 
Tina, sorry about you Mom's diagnosis, I hope you get her computer figured out soon.

If your Mom hasn't worked enough in the last 10 years, that may be why her SS disability was denied. Does she have regular SS?

You're right, this place is a lifeline to us all.

Oh, you need to have a certain number of posts to use the private message (PM)... all you do is click on the person's name and click on private message.
 
Hi tmackenzine, I am very sorry to meet you this way, this is a wonderful place, to learn & vent & share experiences. I find if I talk about things my Mom and us go through, it helps me help my Mom better and stay strong for her. My Mom's also started with her speech and now she has trouble swallowing. She can no longer drink her coffee or water, it's too fast for her to swallow, so we are trying to get her to use the thickit...she agreed to the feeding tube after she lost 20 lbs in a short time frame and has been able to maintain her weight with it. Now she eats soup, but coughs a lot during and after. It is very hard....I've tried getting her to join this group, but she does not want to. She also has some fronto-temporal dementia because of this, a whole different deal....I hope the best for you and your Mom, it must be difficult you are so far away from her. Take care.
 
Welcome Tina,

Sorry to hear about your mom! This is the best group of people and the best help!


Jen
 
Hi pscheffel, what is thickit? I bought my mom a couple cases of ensure and a abunch of the "muscle" enhancers ensure six packs. She has been drinking them for over a week now, and quite offten. She meets with the dietician this Tuesday to discuss the feeding tube. I want her to get all the nutrition she needs and lost. Before we knew what was going on, she was basically living on cottage cheese and yogurt. I know she lost a lot simply because of this. She said she just was not hungry and frustrated with her swallowing. I always blamed her medicine taking away her appetite. While I was with her this past week, she was able to eat everything we prepared as long as it was softer and bar-b-que chicken as long as it was cut up tiny. When is the feeding tube necessary? When she can no longer eat, or is it used as a supplement to what she's able to eat? I know she will find this out on Tuesday.
 
Hi
I am so sorry about your mom. you must be in shock over this.
Thickit is used to make water and other liquids thicker consistency which is often easier and safer to swallow.
Feeding tubes are used to maintain weight and nutrition and in general sooner rather than later. maintaining weight is incredibly important in ALS patients. Also it is better to have the procedure for the feeding tube before the breathing is too compromised.

Does your mom live alone? Is her area isolated? (you said she lives in the woods) Hard as it is you should think about getting her to move if so. She will need to be smewhere where she can get more help and services. Noone can predict the course of this disease but if/when she starts with hand/arm involvement she will need a lot of assistance.

After you are over the initial shock try to plan ahead. It will make it easier down this difficult road
 
Hi Nikki,
I am in shock, in disbelief, I feel helpless. She lives with my dad, luckily my brother and his wife live up the road from them. She lives approx 20 miles fom town, then 4 miles upa dirt road to her house. When my dad retired, they basically moved to our famly camp, remodeled it and are very happy there. My dad does a lot of gardening and it's very peaceful there. I am so grateful my brother lives up the road. He works a lot during the week, but checks in on them nightly on his way home. My dad is a busy-body (opposite of mom). I worry of him too. He's had a heart attack and open heart surgery about 3 yrs ago. He's doing good now though.
It's such a long story, but over the past few years I have always thought mom was on too much medicine and that this was the reason for her ill health. She would call me and I would get so angry that her voice was so slurred (automatically thinking it was the medicine). Now looking back, shame on me. I could have been there more and should have. My mom is only 63. My children are going to be 6 and 8 this month... when I think of them, that's the hardest part. My mom adores them to pieces. I have not told them and I don't think I will. I just tell them that granma is not feeling well... I just hope to get down to see her on the weekends I can. But the weekends take forever to get here.
 
That is great that your mom has your dad and your brother and SIL are nearby.It is very hard for you to be so far away and with 2 young children you have a lot on your plate. It is hard to know what when and how to tell children. what they need to know will change over time of course.
Thinking of you.
Nikki
 
How long have you or your loved ones gone with walking, speech/swallowing problems, breathing?

Looking back, we went craft-saleing maybe 3 years ago and I remember watching my mom having trouble lifting her feet out of my car. I noticed it, but didn't say anything. Then over time seen her walk slowly. But now, since she has lost all this weight, I can't believe how quickly she walks again?! I would have thought she would have trouble walking. i don't know though. She is okay with moving, but has a pinched nerve in her neck that bothers her on car rides (she wears a neck brace sometimes for it).

Then there's her speech and swallowing, this started months ago (maybe 9). Her lower jaw and sometimes her hands shake a little and this started back when her voice started changing. Do you or your loved ones have similar symptoms? She also had a slight vision decrease. She now needs a magnifier sheet to read the paper. They thought it was from a stroke, but now think its from the ALS.

I guess what I am asking for, is your syptoms and time frame. When did they start?
 
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