Old 11-07-2015, 06:29 PM #1 (permalink)
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Default limb onset ALS

Hello everyone. I finally received my official diagnosis on 11/2/2015, but have been 99% sure that I had ALS for many months now. The worst part has been telling my family - it feels like I am crushing all their hopes and dreams for me. My biggest concern is for my kids, especially the little ones. My boys are 13, 4, and 2 - I just turned 34 last month. I have been a stay at home mom since my 4 year old was born, but can no longer care for them like I used to. I feel so bad for them... We are planning a trip to Disneyland in January, so I am looking forward to that.
My first appt. at the ALS clinic is on 11/18. It seems like my ALS is progressing quickly, but I have nothing to compare it to. My symptoms started in May of this year, and now I can barely walk and use of my hands is pretty limited.
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Old 11-07-2015, 06:39 PM #2 (permalink)
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Default Re: limb onset ALS

This just breaks my heart. This disease is hideous but when it strikes those that are still young with little one's it is just a blow that words can't describe. I am so sorry. Please know that there is a wealth of knowledge in this forums and above all else, unconditional support for you and your entire family.

My thoughts and prayers are with you.

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Old 11-07-2015, 06:40 PM #3 (permalink)
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Default Re: limb onset ALS

Sorry to meet you here. But if you have to be here you will find friendship and support.
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Old 11-07-2015, 06:45 PM #4 (permalink)
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Default Re: limb onset ALS

I am very very sorry that ALS was indeed your answer. Welcome to our family.
Feel free to ask questions, do read the stickies.
Disneyland will be great. Plan to pace yourself and definitely rent a scooter or power wheelchair even if you are not using one at home

Hopefully clinic will offer you a lot of help especially pt and ot. Call your local ALSA as well

Last edited by Nikki J : 11-07-2015 at 09:14 PM
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Old 11-07-2015, 08:06 PM #5 (permalink)
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Default Re: limb onset ALS

Welcome! So very sorry you are joining us but be reassured-here you are surrounded by people who understand, who can offer advice and support, and a place to vent when you need to. You can ask any question you have....someone will try to help you.

One big question we always ask is are you a vet?
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Old 11-07-2015, 09:04 PM #6 (permalink)
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Default Re: limb onset ALS

So very sorry to be welcoming you to this family.
I read back on all your old posts to refresh myself on how the diagnostic process went on for you.
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Old 11-08-2015, 09:33 AM #7 (permalink)
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Default Re: limb onset ALS

I so very sorry ALS was your final diagnosis but welcome to this wonderful group. You'll find an abundance of support here. I think Disney is a great idea for you and your family. Cee x
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Old 11-09-2015, 02:01 AM #8 (permalink)
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Default Re: limb onset ALS

Thank you all for all the warm welcomes.
I am not a vet. And i do not have a wheelchair yet, but i am ready for one. I am going to call the local alsa tomorrow to see if they can loan me one.
My big question for today is: is there an easier way to type and control a mouse? it is very difficult for me
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Old 11-09-2015, 09:35 AM #9 (permalink)
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Default Re: limb onset ALS

So sorry to welcome you here and it breaks my heart that this nasty disease can strike anyone but a young mother is horrible.
Do you use a tablet or phone to type? If so there are a lot of aps that you can talk into that will turn it into text. Google has many and my husband uses them all the time since it is hard fro him to type.

Contact the ALS association right away. They will be able to help you with so much and direct you to other agencies that can help.

Hugs!
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Old 11-13-2015, 09:30 PM #10 (permalink)
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Default Re: limb onset ALS

Sorry to meet you here, but there are many good people here and lots of wisdom and caring. Register with your local ALSA AND MDA chapters if they are both there. They have different loan closets. Use them for as much as you can. I have a ton of loan closet equipment and they love people getting stuff. It helps with your costs a lot. Our local chapter even has a company that provides bipaps for free! The ALSA doesn't do hospital beds, but MDA does in many of their locations. Also, make sure you register with the ALS Registry. That way they can get better numbers that will help, maybe us, but definitely people after us.

Don't be afraid to ask a question, but use the search tool and check the stickies 1st as you will probably find the answer that way.

Good luck and prayers are with you.
Doug
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Old 11-13-2015, 11:05 PM #11 (permalink)
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Default Re: limb onset ALS

Actually, EPT, the Evergreen ALSA chapter, which serves you, did do beds (not the right kind for us, but prob for you) as of a few years ago. Call them and see what they can do.

Re wheelchair, they can probably do a manual loaner. We donated Larry's old one to them, actually.

I PM'ed you about coming by to snarf up whatever -- offer still holds! I also have a current minus one version of Dragon (voice recognition software) you can have if you're on a Mac. But if you're on a mobile device, there are definitely multiple apps to try. Search the threads.

--Laurie
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Old 11-16-2015, 05:31 PM #12 (permalink)
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Default Re: limb onset ALS

thanks for the replies. i did contact the alsa and they brought me a manual wheelchair and are going deliver me a pwc and hospital bed. they are wonderful and so are you guys - thanks for all the great advice. i will look into voice apps
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Old 11-16-2015, 07:07 PM #13 (permalink)
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Default Re: limb onset ALS

Welcome mrs. Eptwa, i was 33 when diagnosed, am now 35.,I find the people here very helpful and knowledgable about everything i have asked about sometimes even more helpful than the professionals. So ask lots of questions. I use my iphone to type and a speech to text app for long entries, but when i used a mouse i found a smaller one/mini mouse easier to control.
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