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emma1230

Member
Joined
Aug 27, 2008
Messages
13
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
hello! I just now figured out how to post a new thread or make a post.. I have wanted to so many times, but could not figure it out. I am new, and have only posted once before.. If any of you have any advice, please reply here and my email.. [email protected] and put als in the title bar..
I am so scared.. I am 30 years old, am married and have a 2 1/2 year old and a 5 month, and we just remodeled my moms house so we all could live together and take care of her. so, we've now been living here for about 3 weeks. before we moved in, my mom would stay the night by herself and then I would come over with the girls first thing in the morning.. and she was fine.
Now, she does not sleep.. she gets up and down all night long.. Sorry, I forgot to mention that she has bulbar onset, but now she can hardly walk and now can use her hands or arms.. There is so much I want to say, and I just can't seem to organize my thoughts.. so i apologize..
okay, so now, she seems like at time she is SO OUT OF IT>. she looks like she is on another planet.. I DON'T KNOW WHAT TO DO!
We went to the dr for the leg cramps, but even with medicine she gets up and down all night long. I thought that her lack of sleep was making her out of it, but could she have dementia? I read that it is rare, but she is just not the same person..
it is so so so hard for me.. i love my mom so much and hate that she has to suffer like this.
Her boyfriend stays here at the house as much as he can, so it is helpful, but what do I do when I can't handle her? how am I supposed to know who to come and help me? everyone says she is entitled to home care.. but she has cobra insurance through her work, and doesn't qualify for medicare until april of 09...
how do people know what to do? In june she was okay! she could walk pretty good etc.. now just a few months later she is an entirely different person..
could this just be her way of dealing with it? (her getting so out of it?)
We went to a natural path and paid so much money, like 1000 bucks a month and she said my mom WOULD BE HERE to watch her grandchildren grow up..
I feel so stupid for believing her. they replace all of my moms teeth because the metal in her mouth was the cause.. the natural path dentist cost us even more 1000's.. and now we are broke..
I could have used that money to get help or in home care.. I would have believed in santa clause, if it meant my mom would get better.. i just feel like such an idiot for believing.. they said she had lyme disease..
okay i am rambling.. I apologize that I am so scatter brained.. I just could go on forever.. if anyone has any advice, i would appreciate it..
this all just sucks.. my mom is my best friend.. i am so sad that she has this! thanks for reading.. sorry to complain..
 

emma1230

Member
Joined
Aug 27, 2008
Messages
13
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
help!

i just wrote a long post, but it never showed up... so apparently it was too long.
I need help.. I am 30, with two little girls,and a husband.. just moved in with my mom to take care of her.
she is slipping away so fast I dont know what is going on. she looks like she is on another planet.. do people get dementia with als? she is SO out of it most of the time.. this all started with her voice, and just 6 months ago it as attacked her limbs.. she can barely walk now.. this is just all so depressing..
how am I supposed to know where to find help? the dr isn't that helpful.. I need to know what I need to do.. i am lost.. i have so much on my plate.. 2 kids is a challenge.. and now my mom is immobile.. what can i do!
 

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
You didn't specify the type of doctor your mother is being treated by. Is he a GP or a neurologist?

Has your mother had any testing done or been diagnosed with anything yet? If you have spent time on this forum, you realize there are all sorts of medical issues that cause the same symtopms.

I sincerely hope your mother has one of the other possibilites.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi emma, again my mom is the same, sometimes i feel she hasnt got a clue whats going on around her. I think dementia but then other times she is talking like the old her, so dont know? But yes some people with als can be affected with dementia. I read on another thread that the lack of 02 and carbon dioxide, (if she has trouble breathing) may cause some confusion, from lack of oxygen to the brain, and as its only at times, Im gonna go with this theory!
I found the doctors are not great, but if you have a local mnd clinic or association these are great, our community nurse and OT are very good also.
You will find all your answers here also, hope this helps a bit!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Emma ... I'm so sorry that your mom is suffering this decline, and that you are so overwhelmed by your multiple responsibilites!

Has your mom been diagnosed with ALS? If so, contact the ALS Association in your area. They are TERRIFIC at helping people with one-on-one advice, and loaning equipment that make caring for the patient easier. If she has been diagnosed with ALS, the Muscular Dystrophy Association will help you, too.

About the dementia: Yes, some percentage of ALS patients do develop dementia, too. Your mom's doctor should be told about this ...

Hang in there,
BethU
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi emma. Sorry about your mom. Have you contacted MDA or ALSA ? They can help with assistive devices and in some areas have support groups that are for caregivers as well as the patient. How is your mom's breathing when lying down? She could be not getting enough oxygen and building up CO2 which could be part of the reason for the confusion. Recent studies have found that some form of dementia can be found in up to 30% of patients.

AL.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
By the way Emma if you put a link in your message it will not be put up on the board before being approved by a moderator. This usually doesn't take long.

AL.
 

emma1230

Member
Joined
Aug 27, 2008
Messages
13
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
thank you everyone for all your input.. We have our first pt, speech, and ot appointment this wednesday.. I am hoping it will all help.. I need to get in touch with the associations.. I just get so emotional.. I feel like an idiot anytime I call anyone having to do with my mom.. THis is the most difficult thing I have ever gone through..
Is bulbar onset worse than limb onset? just curious because I have heard of people being around for years.. and for my mom is has just been in the last 6 months that she has gotten so bad.. I HATE ALS!
any way.. i so appreciate all of your advice.. thank you
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Hi Emma.
I'm so sorry to hear that your mom is having such a rough time & that you are so stressed with everything. Very understandable, though. This is difficult both physically and emotionally. If your mom already has an ALS diagnosis, she will be automatically approved for Social Security Disability Insurance, which will take effect avfter 6 months, and Medicare, which will start after 5 months. If she hasn't applied yet, do this ASAP. Hang in there. You have found a great site for support in this forum.
 

emma1230

Member
Joined
Aug 27, 2008
Messages
13
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
we went into the social security office to ask about medicare, etc, and my mom has to of had her social security for 2 years before medicare kicks in... I couldn't believe it.. So, she gets cobra for 18 months, in march cobra ends and april medicare begins..
She got social security the first time she applied.. People were surprised she got it so fast..
Cobra seems to be pretty good.. it's about 500 a month, but it covers most of everything..
 

emma1230

Member
Joined
Aug 27, 2008
Messages
13
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
mom was diagnosed nov 07.. so in a month it will be a year
again.. thank you so much for everyone's replies.. i appreciate all the help
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
HI Emma, my mom was diagnosed Oct 07, and her symthoms are almost identical to your mum. I have to say the hospital not great, but associations are very helpfull, I dont use them too much but they do give us equipment, and the local ot and local nurse are great, I only have to make a call for say a wheelchair and its delivered the next day, they are a god send! Have you got any other family or friends, my mams friends come down about twice a week and bring her to the shops or out to lunch and its great, it gives me some much needed me time, my mam feels a little normal having her friends to have gossip and chats with, its a great break!
Hang in there, you are doing great!
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Emma,

As for the SSDI & Medicare. Your mom's DX of ALS AUTOMATICALLY qualifies her for both. An ALS DX is a terminal illness & qualifies for benefits (including Medicare) under the TERI (terminal) law. Maybe the person you spoke with was not aware of this. She does NOT have to wait 2 years for Medicare. Try contacting SS again & speak with a supervisor or see if your mom's social worker can assist you.

Emma, I do not have ALS, it is my husband. He was DX 8/07, with symptom onset early summer of 2005. Let me know if you need help with the SS maze. Take care.
 
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