My Mom was just diagnosed with ALS

[tmackenzie]

Brooksea,
Thank you so much for the input on Social Security. I will be calling them tomorrow from work to get to the bottom of this. I just don't know their policies or benefits... I've worked for the past 23 years and paid into them, but I have no clue on how to deal with them. I'm going to find out and have them explain to me! Wish me luck!

 

[tmackenzie]

If your mom worked and they turned her down its because they have coded her wrong because with als diagnosis your automaticly approved for disability if they code it right

caldona, thank you. I will find out more for her tomorrow. I will check into this.

 

[sadiemae]

With Social Security, they will only talk to your Mom. When I called them to change our address, I had to put my husband on the phone. He gave a wrong #, and in the background I corrected him, and the lady told him to tell me I couldn't speak. Just be aware they may not help you

 

[brooksea]

You may want to review information provided by the SSA about disability, if you haven't already. If they give your mom a hard time, you may need to get your congressman involved, if she truly qualifies.

Here is the site:

http://www.ssa.gov/disability/

 

[glupavomomiche]

Sorry to hear your mom has ALS, tmackenzie.

I took Dopamax (my neuro's name for Topamax) for migraines too... Wow, that stuff is terrible! It put me in the slow zone... It was like my brain was filled with Elmer's glue! But you are right that it kills your appetite and causes weight loss, so I think it's safe to say you can blame your mom's loss on the medicine. Is she still taking it?

 

[tmackenzie]

Sarah, my mom's neurologist first said it didn't matter that she was taking it, then I cut in and told him of all the side effects I found on line. I found on the FDA website that there are 206 cases of people suffering with Dysphagia and every single one of them are taking Topamax! Not to mention all the other effects... (weight loss, dementia, insomnia... the list goes on and on). So he told her, to stop taking it for 2 weeks and to see what happens. I honestly don't know if she has stopped it (I pray she has), but I don't think she believes this to be a culprit simply because he didn't. She has to hear a doctor tell her it is bad in order to stop it.

 

[caldona]

With Social Security, they will only talk to your Mom. When I called them to change our address, I had to put my husband on the phone. He gave a wrong #, and in the background I corrected him, and the lady told him to tell me I couldn't speak. Just be aware they may not help you

It must depend on who you talk too because I talk to them for my mother and now my daughter talks to them for me I had to tell them that she would do my talking they said okay as long as I said it was okay

 

[st123]

Hi,

Check your PMs. I just sent you some information that you may or may not find helpful.

One thing I forgot to include on the list is electrical circuits. They're relatively cheap and it's critical that you have sufficient power. It may be an issue since they're living in cabin since it may not have been designed as a 'primary' residence. Not sure what remodeling was done, but have the electrical looked at sooner than later. My house is only 12 years old, but I added 2 new circuits to my parents' room because his TV, DVD player, bi-pap, computer, hospital bed, oxygen machine, cough assist, phone charger, lamps, overhead lift, etc (think about it - it's a LOT) were all on the same circuits as a couple of things in my kitchen and the circuits couldn't take it.

I'm glad you're there for you parents and thinking ahead. Maybe you can work out an arrangement with your sister where you can help out by doing 'online' stuff and making appointments etc since she'll be putting in more 'face time' helping out mom. Balancing the effort and working together will help everyone if things start getting busy and stressful. Keeping each other informed will prevent any duplicate efforts - no one has time for that

I worry about all of the PALS that live in remote areas. The Keneenaw peninsua is definitely one of the most remote places I can imagine, especially in the winter where I think you guys get well over 200" a year and none of it melts until spring!

Take a look at the PM when you have time. Meanwhile, thoughts and prayers to you and your family.

 

[margaritachick]

tmackenzie-
My mom's started with the slurred speech. She was having trouble saying r's and l's, like watermelon. My grandmother asked her if she had been drinking one night and she went to the Dr. the next day. I can't say that I noticed it really. They checked everything and finally diagnosed it as ALS. She seemed to go downhill pretty fast. This disease seems to attack the parts of the body that people use the most. My mom was (is) a blabbermouth (in a good way) and always very active. Within 3 months she could hardly talk anymore and within about a year she was in a wheelchair. Thank God for the DynaVox system, which is a voice assistance thing. She took to it really quickly and now we can at least have short conversations. It takes a lot out of her to have to talk with her eyes, but she does really well with it. This disease is hard on EVERYONE involved, the patient and the family members. I work for the family business out of the house so I see her everyday, except weekends. I just can't see her everyday- it's too painful. I know that may sound selfish, but...
You will be OK in the end. You will do a lot of things you never thought you would be able to do, and have feelings you never thought you would have, but you will be OK. It takes a little (lot) of getting used to. Just make sure that you have a good support system behind you, which it sounds like you do. Make sure that everyone does their part or you will burn out. I wish I had done that- my dad is out of town A LOT for overnight trips that sometimes last for a whole week. I have a brother, but he has a wife and 3 kids under the age of 4 (one set of twins) so apparently he can't help out as much as I can (no kids). It is up to me and my dad's sister to stay the night and do all the care at night. Aides that we have had don't seem to be very reliable and pretty worthless.

 

[jamiem]

I have bulbar palsy and my lower jaws quivers a lot, difficulty swallowing and breathing. People ask me if I am cold, but it can be 110 and my lower jaw shivers. Go figure.

 

[tmackenzie]

Jamiem,
My moms lower jaw quivers a lot too. It started last fall. She too, looks like she is cold, but since all of this she is actually warmer than she has ever been. She used to be one who would need a jacket or sweater all the time.
We have an appt this Thursday at University of Michigan. I feel liek I have a sliver of hope it from her medicine's but th emore I read on what others are going through (such as your lower jaw) I think that the reaility is ALS. I have contacted a few organizations and they've contacted me back, but it's so hard when I work during their times too. My boss is very good and has allowed me timeoff but I have been so busy there with work tasks that I don't get a lot of free time to call. I am hoping that Wednesday while I drive her the 9 hrs to lower Michigan I can maybe get some calls in.
Next week (I am off for a few days), I am going to contact some people on getting her satellite internet. My sister-in-law is going to borrow her her computer, so that is a plus.

 

[tmackenzie]

It must depend on who you talk too because I talk to them for my mother and now my daughter talks to them for me I had to tell them that she would do my talking they said okay as long as I said it was okay[/QUOTE

I finally have that resolved. I am now authroized to talk to anyone on moms behalf.

 

[jjaeckel]

Hi Tina
I just logged on to the site for the first time and saw your posts. I'm sending you Mom a letter this afternoon. I've been diagnosed since july of 2010 and am still doing pretty well. It's important that you both cast an anchor into some hope! We know that it's a hard commodity to find when you are talking about ALS.
John

 

[tmackenzie]

Hi John,
I do hope you check back on this thread... I brought my Mom to the University of Michigan last week for her second opinion, and yes they confirmed the ALS diagnosis. We came home Friday night late, and we discovered your letter. She was very glad to see it and you do offer her hope. Thank you for your nurtistionist's name, we will call her. We go back to U of M on Nov 7th to see the specialists. You should be seeign a letter from her soon. Take care, and thank you for being there. Tina

 

[Waiting]

Tina,
Thinking about the Social Security issue. If you continue to have problems you might try a lawyer. There are many that specialize in disability and can many times get the job done fast the someone on their own. Look for one that only charges a small percentage of your back pay and do not charge if they can't win your case. They are out there. We have two in our small community. A term that I sometimes tell patients with life limiting diagnosis to use for social security applications is "Presumptive disability". Hope this helps and peace to you.