Hello...
My name is Laura.I'm 34 and live in the South....I was DX'd on Friday with motor nueron disease...looks like ALS.I'll have my official DX next month at the MDA clinic.
I've had trouble swallowing, chewing,muscle weakness,some wasting and twitching for about 5 months now.
I'm posting because I could really use some support.I have two young girls.School is out where I live in one more day.Yikes!!!
I'm looking for other Pals with young children for advice.I plan on sticking around but am very worried...money ,choking ,etc...
Also I could use advice talking to my kids.They know I'm sick but It's hard to let them know what will happen because I don't lknow what will happen or when....has anyone else been there? (by the way they are girls 7 and 9) I would appreciate anyone sharing advice online or by email...
Thank you...Laura


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Laura,

My Mom had ALS. Unfortunatly she just passed away on April 29th. That being said, I have an 8 year old daughter & my own health issues too! The ALS or MDA have great resources to aide you and give you advice. They have specially trained nurses that can talk to you & perhaps assist with how to talk to you kids! When you are ready you can look up your local chapter for assistance! I would keep any explaniations simple right now to them. Ask them if they are worried. They do worry. Especially if they have no information!

I would wait until I got my official diagnosis! You must be very anxious right now with a motor neuron diagnosis! I would be happy to talk to you any time possible!

Do you have family nearby? PS. I am 43 years old and live in Northern Virginia!

Big hugs,

Pam

Dear Pam,
I'm sorry to hear about your mother......thanks for reaching out to me.
I know this sounds crazy but I'm just ready to get a DX...I can't get any help from the organizations uNtil I have this MDA dx....we don't have insurance so it has slowed things down quite a bit.
I have family here but they are in denial except for my husband because he has seen me choke and has noticed my progression.I still look pretty "normal" except for dragging my left leg as the day goes on and shakey hands.
I'm hoping our family will accept something is wrong .I know it is hard...I have been the caregiver and babysitter...partythrower etc...
I've been keeping it pretty basic with kids and being honest at the same time...they have been at school so it has been easier.Thge hardest part is that I am so hyper usually and looking the same to them they can't figure out why I can't do everything I normally do and they are smart!!!
I have met one wonderful young mom with als who has been helping me ..unfortunately she lives very far away.By the way I live in Florida
I would like to talk you ...you can email me if you like...
Thanks Again ...Laura


[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]

Laura,

When is your appt for you official diagnosis? I know it is hard on the kids too. I suffer from depression and since my Mom's illness got worse, panic attacks! Like I needed something new to add to my own illnesses! I worry about how she suffers from seeing my ups & downs! I tell her I don't feel well a lot because I am depressed! I do see a doctor. I had what I thought was a bad reaction to a depression med & went off it so my moods are unstable again! I used to joke that I had more doctors then my mother. I have a urologist,psychiatrist,neurologist and now an onocologist. I have been having bad pap smears so was referred to an onocologist for that! Another story!

Anyway, how are you doing? lol Thought you were the one looking for help huh? lol

Pam

Hi Pam,
I'm doing ok considering....I think being on medication for depression is saving me right now!
I just got off the phone with the Floridad ALS care group...it seems the Dx I have right now might be enough to start getting help.To be honest the waiting is the worst part...I haven't had a check for my breathing and that would make me feel a lot better...my sweet husband is working on that today.
My little girl is home sick with the flu today so she's keeping me pretty busy....Is your daughter out of school yet?
I have been reading a book for parents with a chronic illness and it has had a lot of good advice...ALS is just a hard one because it is so unpredictable.
I hope you have someone good to talk to....I took care of my grandmother until she died 3 years ago...I'm glad I did even though it was hard.
Thanks again for your post...I had to go back and read the rules to figure this all out! ;)
Take care...Laura

Laura,

I am glad you called ALS. They can laon you videos,equipment,pamphlets, etc.

Do you qualify for medicaid? I would hope they could help you especially if at this point you are condsidered disabled?

As far as the choking. There are thickening additives you can buy or maybe get from ALS! There are better things to drink as to not choke. My Mom perferred a cup of coffee or juice as apposed to water. The docs and ALS assured us that no one ever died from choking that had ALS! It's scarey as heck though.

My daughter is out of school on June 17th. As am I. I am a school bus driver! It's been the best job as far as being with my daughter and my son when he was younger. He has been in special ed since 3rd grade! Quite a lot to handle!

Sorry to hear your daughter is not feeling well. I hope she recovers quickly. We are passing strepth throat around among my daughters friends. I am hoping she doesn't get that!

I do have 4 sisters to talk to and belong to an online support group that helps!

Talk to you soon.

Pam

Hi Pam,
Thanks again for your support!I will look into the thickening agent...water went down the wrong way again last night.Can you buy it at a drug store?It seems to worse at night.:(
I'm sue we will qualify for medicaid....we have gone through all our money just to get the tests so far (mri,cat scan, emg,dialation of my throat....etc)
My husband is tring to speed things up today.
I'm alone with the kids .It's going ok so far....one day at a time...
Take Care...Laura

what is the book you're reading for parents. would you recommend it? it may be something i'll look into getting.

Laura,

How are you? How is your summer going?

Pam

Hi Pam,
Sorry I haven't written back...I thought I was banned from this site !
I guess I'm not anymore.:)
I still don't have a dx...I'm going to another doctor next month.It's very frustrating...I'll let you know if I find out anything.
Thanks for checking in on me...i'm hanging in there with the kids.I hope you are having a good summer too. Take care...Laura

Hi Laura,
I'm new here.
I live in the UK and my mum died of ALS, or Motor Neurone Disease (MND) as it’s called here, in 1972 when I was 14. Relatively little was known about the illness then and little help was available. She was 48 when she died after a rapid progression, about the age I’m reaching now – and coincidentally I have children of my own. All I’ve read here has made me very reflective. I think I can relate to both sufferers and their children. My advice to you, especially as your children are young, is to concentrate your efforts on a journal with all the things your kids will one day wish they’d asked or known about. Things that might be too hard or complicated to speak of now, but written, drawn, photographed, recorded will be treasured. I have very little to look back on and memories get distorted. I know I was pretty ignorant, angry, selfish and didn't appreciate the seriousness of what was happening. My thoughts are with you even if I'm prohibited from contacting you directly. Take care.

Hi Laura. I am sorry you are dealing with so much. I know it is frustrating when you cannot find out what is wrong.

Please read the "Please consider this if you may have ALS" thread on this site. I suggest that you have tickborne illnesses checked as a possibility. The Lyme disease board at this site is great. If you do pursue this, it is very important to see a Lyme knowledgeable doctor. Which part of FL are you located in?

Don't give up. You will find out what is wrong.

Hello, I can see this is an old thread but just wanted to post cause my mum had mnd and I looked after her in her final stages. I don't have children but I do have nephews so i can understand the problems with explaining it. One of the things i found with mnd is that because it is not as common as other illnesses it's hard to find people to talk to or realte to. So if u or anyone else reading this wants to talk about it , just shout :)