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04/02/2010 06:48 PM

New to group....

amyk
amyk  
Posts: 26
Member

My Mom was diagnosed with ALS in November 2009, so this is all very new and very scary to me. It is just my Mom and I. My brother died in 1990 and my father died in 2001. Aunts and uncles live out of state. Just having a hard time realizing that I will be her only caregiver when I have an illness myself.

Just wanted to say hi and introduce myself.

Amy

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04/02/2010 10:22 PM
lizzytizzy
lizzytizzy  
Posts: 197
Member

welcome welcome!!! glad youve decided to join. our group is small, but we do our best. im very sorry to hear about your mom. my best friend has had als for almost 8 years now. if you ever want to talk, please feel free to post or to pm me. can i give you some advise??? PLEASE find yourself a support system. its so important when dealing with this disease. and depending upon the decisions your mom makes when it comes to prolonging life, you will need all the support you can get. its too much for one person because its literally 24/7 cares. also, im sorry to hear about your illness. again- welcome to the group and i look forward to getting to know you.

04/05/2010 08:01 PM
TrikeRider
TrikeRider  
Posts: 93
Member

Hi Amy,

Sorry to hear the news but you have come to the right spot for help. Liz is a caregiver for an ALS patient and can give you loads of help. I am only good for support. My advice is get to know Liz, she could be your best friend. Also see what help is available locally, Muscular Dystrophy (http://www.mda.org/) can find a MD Clinic near you. If your mom has been definitely with ALS, then she can sign up for Medicaid instantly in case you have not done so.


04/29/2010 06:32 AM
Scott88
Scott88  
Posts: 5
Member

Hi Amy, I know what you are going through. My father was diagnosed with ALS in 1996 and passed away in 2002. I understand the helpless feeling you get when watching this disease take over your loved one. If there is anything I can do to help, feel free to contact me. Remember do not keep things bottled up, somehow you need to find a way to vent and let loose. Remember to take care of your self too!

05/18/2010 11:41 PM
amyk
amyk  
Posts: 26
Member

Sorry I haven't been on here since my first post. Thanks for the welcome and for telling me a little bit about yourselves. I forgot to "subscribe" to this topic so I had no idea that anyone had replied to my post. Guess that's what happens when you've got lots on your mind. I'm also trying to put together a benefit for my Mom for some time in the summer (possibly July).

My illness is panic disorder with agoraphobia....basically means I'm afraid to leave the house. So, trying to do anything to help my Mom outside the house is very hard for me. We have to rely on her friends to get her to doctor appointments. I'm trying to find someone to take her to the local ALS support group. It's hard not being able to do it myself. I do everything else I can for her.

Scott, I'm sorry to hear about your father. Did his ALS progress quickly or slowly?

TrikeRider, thanks for the welcome.

Lizzytizzy, thanks to you as well for the welcome. I'll try to stop by more often. I'm sure as my Mom's disease progresses, you'll be seeing more of me. She is still able to walk, but has to rely on a cane or walker. She is losing her balance more and more everyday and has a hard time standing up from a sitting position. I noticed today that she is really dragging her right foot. I've also noticed lately that when she gets tired, her speech becomes slurred.

I have a question.....once your friends or loved ones were diagnosed, did their doctors just kind of write them off? My Mom has only seen her neurologist 2 times since being diagnosed. We are in the process of trying to find another ALS specialist, but it's not easy.


05/19/2010 08:29 PM
lizzytizzy
lizzytizzy  
Posts: 197
Member

amy- im not sure how rays drs were when he was dx. i will ask him. i didnt know him then. i do know however that in the last 2 and a half years he has not seen his neuro. unfortunately it is common for some drs to write ppl off after a dx because a lot of them just look at it as "theres nothing that we can do anyway". there is no cure. and there is only one approved med, but so far all thats doing is giving ppl a few extra months. this is not fair and completely unacceptable in my eyes and i agree that you should try to find a different dr. you could also go thru the local ALS chapter. they have a lot of resources to help ppl out. you could do this from your computer so you wouldnt have to go out.

im sorry that you are dealing with your own medical issues. its hard enough when you dont have anything going on yourself. please try to find a really good support system so you dont feel alone and get burnt out. your mom will need more and more help as this disease progresses and one person cannot do it alone. also, just so you are aware, ray (my PALS) is more that willing to answer questions that you or your mom might have. he was dx almost 8 years ago, is completely paralyzed, on a ventilator, and has a feeding tube. he's been thru it all.

i will keep you and your mom in my thoughts and prayers. keep posting. it helps!!!

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