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slopokahontas

Distinguished member
Joined
Sep 5, 2014
Messages
116
Reason
PALS
Diagnosis
08/2014
Country
US
State
Az
City
Tucson
I was diagnosed last Monday with ALS. It took a year of tests before my neurologist finally said he didn't have any more to run and sent me to the ALS clinic. I have 6 kids. 19,16,13,7,5, and 3. My mind races with all the things I want to and need to do. I'm 38 and had plans of being a crazy old lady (because they can get away with it) Plans now are to be crazy disabled lady! Leave it to me to not do the I've bucket challenge, but go big and get this life sentence instead! What do I do now? I can walk and talk for now. Do I build a ramp, record my voice, file for disability, find a nanny? I'm lost and feel like I've been spun and dropped into a deserted island where no one understands me. Three letters..ALS, to sum up the horror? Hardly seems adequate!
 
Take a breath. You are not alone.
You have a support group in Tuscon.
First thing Monday give these folks a call: Support Groups - The ALS Association Arizona Chapter
The ALS Association has knowledge of local resources and can help.

In the meantime read thru the other intros.
 
Im so sorry for you-have been there and know just how you feel.
Give yourself some time to come to terms with it.
You will find understanding and support here.
Definitely file for disability. Are you married-or do you have a CALS (caregiver who will take care of you)?
 
Dear Slop, so, so sorry, but you are in the right place for help. There is a wonderful thread to help guide you, called "anticipatory planning- trying to stay a step ahead." You can use the search to find it. It will give you an itemized lists of things to take care of and guide you. Hope you have a good support group to carry some of the load for you! And please don't give up your plans to be a crazy old lady! You can still be a crazy young lady- and as you come to the forum for support and answers, you will find lots of crazy people who are using humor to get them through this journey! Take a deep breath, and try to enjoy what is guaranteed to all of us - and that is TODAY! How blessed you are to have 6 beautiful children to light up your days and keep you busy with living! Am sending you hugs from afar. You are in my prayers tonight. If you ever want to talk privately, you can private message me or any of the other caring people on this forum. You are not alone! Donna
 
Hi Slopokahantas, welcome to the forum. Sorry to see you here. We do pretty well helping each other, so ask all the questions you can think of, vent all you like, and share your thoughts and experiences freely.

"Do I build a ramp, record my voice, file for disability, find a nanny?"
Yes, yes, yes, yes. And more. You can never be too early. Are you a veteran? It makes a difference.

I built a wood ramp for my wife, then replaced it with an aluminum one. Concrete ramps can be blended into the house decor a bit.
Although Social Security says you must wait four months, some (including my PALS) received SS and Medicare benefits more quickly by enclosing a letter from their doctor.
 
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Hi
I am sorry you had to find us.
As Greg said take a breath. This is a devastating time but it does get a little better as you adjust.
Getting your legal affairs in order is a priority will but also health care proxy and power of attorney, guardianship for children....
Then if you have left or are leaving work any disability policies and ssdi if you qualify. Your minor children can get a ss benefit too if you receive ssdi but there is a family maximum
Figure out health insurance. You will get medicare in about 5 months. What about the children?
What care arrangements do you need now for children. A nanny sounds like a good idea. You will need more help as time goes on but even if you can handle things now? Getting things in place will make it easier for all
Depending on your onset ( bulbar? Limb?) you can decide what is next but even if your speech is unaffected start voice banking. It is really important to do early as if you wait it becomes difficult/ impossible. Also consider recording yourself possibly reading a favorite holiday story or telling each child the story of their birth or something especially meaningful
On a similar vein some people write a series of letters to be given to their child at life events, graduation, marriage first child. You would have a lot of writing!
Figure out what it would take to make your home accessible as you said a ramp, but also inside stairs ( stairlift) bathroom accessibility and how easy or hard it would be to get around in a wheelchair
As said above if you are a veteran there is a ton of help from the VA. If not start with the local ALSA chapter
Don't be afraid to accept help
 
I'm so sorry you have joined us, but you have come to the right place.

This time of being diagnosed is just awful, the amount of things you have to accept whilst in shock is truly mind-numbing. Try not to take it all in at once, try to remember that it will take time to adjust and that you will find a way through it and we will help you as much as we can.

The planning post is: https://www.alsforums.com/forum/gen...cipatory-planning-trying-stay-step-ahead.html

I'm hoping next week to start another one on advice for newly diagnosed.

You are in shock, and you may be crazy, I love the visual of a crazy old lady, or even a crazy young one, I'm sure I'm in that rank myself.

I hope you have lots of family support, but remember everyone is in shock too. Ask questions here, we know what you are going through.
 
I am so sorry you joined us but you are definitely in the right place! You've been given wonderful advice by others here that I strongly recommend you follow. Your head will be spinning with all the thoughts, concerns and questions; that's normal. Be gentle with yourself, conserve energy as much as possible - your hands are very full. Know that you will find joy and laughter in the little moments once acceptance comes.

Come back here often for information, encouragement and support. &#55357;&#56469;

Sherry
 
So sorry! Everyone on here can relate, you are coming to the right place to vent. Any questions, simply ask! All PALS and CALS from the Forum are here for you. Blessings!
 
It saddens me to welcome another to this group. However, you will find lots of support here and answers to your hundreds of questions as they come up. The first weeks after the diagnosis are the worst, but with time you can learn ways to cope and even truly enjoy moments with the special people in your life.

I go to the clinic at University of Arizona and have been happy with the team there. Also, the ALSA here in Arizona has been supportive, so definitely contact them. Kim Hughs is in charge of patient services and she has been out to our home, made recommendations and followed through with loaner equipment.

Best from another crazy lady,
Kay
 
I will be going to the clinics on the 11th. From what I was told, I will have a fun filled day of different people giving me tons of info. You are all so wonderful to take the time to give support! This is such a surreal expeience! I'm not a vet and have heard you have to not be working for months to get disability. Is that true? Also,I was told pain isn't associates with als, but my legs really hurt as if I just had a Charly horse or will get one.
 
You can get disability as soon as you stop working. If you are working for an employer, they probably have a long term disability plan. A diagnosis of ALS automatically qualifies you for SSDI (social security disability) but you must have been working at a job paying ito social security for 5 out of the last 10 years I believe. If you have then call your local social security office, visit or apply online for SSDI. You will automatically qualify for medicare 5 months after the date you are determined to be disabled. There should be a sticky soon with aqll this information
 
You do get muscle cramps with als and they do hurt. Continuous pain can occur later when you become paralyzed due to bed sores or immobile joints
 
I love your screen name, but I'm sorry to see you here. There's a lot to do, but I would say to sit with it for a month. It took me that long just to process this new reality and feel like I could move forward and engage normally with the world again. It also took me almost that long to notify friends and family of my situation.
 
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