Mom newly diagnosed

[awhite1027]

My mom was diagnosed last Thursday with early onset ALS. So far she is slurring her words and having problems swallowing. The other night she was laughing so hard she started to cry because she couldn't catch her breathe. My mom is one of the strongest woman I know and to see her like this is breaking my heart. I don't understand where this came from and why she has to suffer. She fractured her ankle falling down our stairs, so she is losing her balance as well. My dad told me the diagnosis through a text message while I was at work. When I got him on the phone, he was crying as much as I was. I have never heard him that upset before. That scared me more than anything. Right now she is still working so its good she is keeping busy. This is all so new for us, obviously. My sister flew in the following day after we found out and my brother is making arrangements to fly back from overseas to be here for Christmas. I don't want to make her feel any different but we are all taking this really hard. We are learning about this disease mostly from the internet and I don't know if the more information I get is making me feel worse or helping us to cope. I just don't know what to do.

 

[HelenL]

awhite1027, I'm so sorry to hear of your Mom's diagnosis... you're all going to go through a period of anger and sadness, but once you get past some of that you'll realize that there is life after diagnosis. You'll find lots of good info and advice on this forum, and it will become a lifeline to you and your Mom. I also live in Mass., so let me know when you're ready, and I have a lot of local info to share with you.

 

[ottawa girl]

Truly sorry about your Mom. It is indeed a hard reality to face- so take your time. There's no way to learn all you need to know in one day. Take HelenL up on her offer- she is extremely knowledgeable and familiar with all your State has to offer.

It's great news that your family will be together for Christmas; certainly having my family around me this past Easter helped both myself and my husband enormously. We cried together and then had pizza- so it was the worst day and the best day. Don't worry about making your Mom feel any different - believe me- she's feeling different. Just love her.

We are all here for you! Anytime.

 

[skipper66]

I am concerned about your mom falling again after her first fall. My dad had numerous nasty falls before he was diagnosed. He thought each time that he just had tripped over something. All the time it was ALS. Dad was supposed to use a walker but didn't tell us at first and just used a cane. Which is not reliable enough with ALS. You will fall with it. You have to be extremely careful with walker too. Luckily, my dad never broke anything but has been extremely bruised from head to toe. He now uses a walker with a gait belt with someone always holding onto it behind him indoors and is in a wheelchair whenever he goes outdoors. Hopefully, your mom will have slow progression but think ahead for safety issues. Take care, Kim

 

[WellsRuby]

I'm so sorry that you find yourself here but I have found a wealth of information and support from here. Be sure and take it a day at a time and feel free to ask questions.

 

[Sadieotis]

I am so sorry about your Mom's diagnosis and the problems she and all of you are having. Is she still working because she wants to remain active? Have you considered filing for Soc Sec disability? My understanding is that the ALS diagnosis is presumptive of disability. My wife applied and had benefits and MEDICARE within a month. I wish you all the best.

 

[awhite1027]

She is working to stay active but mostly because I think she will get depressed if she had nothing to do. I know the day will come when she can't work anymore but she wants to work for as long as she can. I'm not sure if they started any of the processes for disability or anything for that matter. I know that she is waiting to hear back about an appointment for swallowing therapy and a few other things. She's scared. She had a melt down yesterday. She was crying and telling my dad she doesn't want to be stuck in her own body. She is too young for this to be happening. I know it knows no age and she is in the time frame for age, she's 54. But she's too young. I think that I am the only one reaching out so far to anyone about this. But it might be helpful to get the rest of my family involved. Helen, any information you have I will gladly accept. I never thought we would have to go through something like this, but I'm sure thats what everyone says. I think she is going to be involved in a clinical trial of some sort so thats a good thing right.

 

[skipper66]

Getting her in a clinical trial is the best chance she's got. My dad takes the drug Ritalek because he's a veteran and it's covered. Not sure how much it helps though. His breathing might have improved a little bit since he's on it. My dad also had some swallowing and speech therapy that did him tons of good. Sorry to hear about the meltdowns but that unfortunately comes with the disease. The anger will come too. Just be there for her and listen. Sending you a hug. You are alot stronger then you think. Kim

 

[Amy Perdomo]

awhite1027 , my mom was diagnosed in september 2011, she too started with slurring words and difficulty swallowing, this was a little over a year ago, my mom today can not speak, can not swallow, has a peg tube in for her feedings (only via tube), my mom like yours was a very active woman, she is 73, i am 47, but me too like you learned about this disease when she was diagnosed, i cried and cried and still cry, i am her caregiver, and i see how she is deteriorating day by day, i bathe her , i brush her teeth, oh and as if this disease wasnt enough, she also has ftd, which is like almost like a dementia...she can no longer write whats on her mind, really she is in a world by herself, how frustrating this is, she means the world to me, but i hate to see her suffer this way....i know exactly how u feel, because the same exact thing happened to me....your going to have good days and really bad days, your going to be pissed off at God sometimes, and another times you will thank him, because now you will learn about the real important things in life, nothing is more valuble than having our loved ones with health...sorry if ive been to up front...please keep in touch..
Amy

 

[hangingon1]

I applaud your concern for your Mother. You are in a unique place to comfort and love her in this time of her need. ALS is almost always fatal and usually within 36 months of diagnosis. Absolutely nothing you can do will prolong her life. She may do that with pure will power, which my late wife did for a year. The will is a strong force. In the meantime, love and take care of her. Try to maintain her dignity, since patients, especially women, tend to lose theirs with this disease. It is a terrible thing to be dependent on someone for everything you do, and sooner or later she will be. Make her feel her self worth. There, but by the grace of God, you might be in her position. Admire her courage, which may be a facade just for you and your husband. Just Love, Love, Love. All of us are going one day. Some sooner, some later. Be courageous when she can't and give her care. Remember Love conquers all!

 

[ysato]

Aloha,
I totally understand what you talking about and thank you for sharing. I was diagnosed 3/2010 by neurologist and reconfirmed 4/2010 by Mayo clinic in Minnesota... It sucks but I am not going to waste any of my time I have left on this earth. Some days are awesome and other days are junk. When my husband and I got the news, I was tripping out, crying etc... well, I got my family together for a potluck and made the announcement and if anyone had any questions or concern etc... it was a bitter sweet moment. My progression is slow and I am thankful. I use a roller walker to get around my home and a manuel wheelchair for long distance. I stopped working in 2010 but still go into the office to help out if necessary. Please hang in there and try and be strong for your MIL & FIL... Take care and stay strong.