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sugartreewoman

New member
Joined
Jun 30, 2013
Messages
6
Reason
DX UMND/PLS
Diagnosis
06/2013
Country
US
State
Tennessee
City
Sugar Tree
I have just now been diagnosed with PLS I have been active working as a medical secretary until laid off in April. I have had balance problems and not picking up my legs. I have fallen often and thank goodness not hurt myself to bad. I just now need to use a cane at all times and got a walker this weekend. I will be 60 yrs old in a few months. I do have the one spastic leg. I have had 5 MRIs and a lot of blood work to come to this conclusion. I am drawing unemployment. Do you think I need to go ahead and apply for disability? Any suggestions of things I need to do or not to help the condition.
I appreciate any help. It is just sad.
 
Hi,

I am so sorry about your diagnosis but...at the same time I am glad you found this forum as we can help each other, and you can find wealth of information, support and help.

Now, regarding your question, I would check to see if qualify for disability benefits.
I don't know how the Social Security Administration classifies PLS.
I do know that for ALS, they approve you for SSDI as long as you had worked enough "quarters of coverage" during your lifetime.

But, if you are falling constantly and have big problems standing or walking you are physically disabled.

You should call the Social Security Administration at (toll free number) 1-800-772-1213 and setup an appointment to inquire if you qualify for disability benefits.

About help for your condition, please contact your Local Chapter of the ALS Association (ALSA) but A.S.A.P. so they can send a representative to your home to make an assessment of what kind of equipment you need for your mobility. They will gladly loan it to you.

Other people at the Forums with more knowledge about these issues may chime in soon with more information for you.


Take care.


Carlos
 
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Thanks so much! Wonder if I could go back on the company with my disability. I will check all the avenues. Thanks again and glad to be a part and support for people who can relate!

I know the Lord has a reason and purpose in all things in his plan!
 
Welcome to the club no one volunteered for!

There isn't a lot you can do to worsen or better the condition of PLS itself. It is possible that losing weight is bad (it correlates poorly for PALS, but hasn't actually been studied in PLSers), but other than possibly that not much will affect it one way or another. This is good news, in a way, because it makes you a lot freer than many people with chronic medical conditions. We don't need to take a pile of meds or avoid a laundry list of things.

So at that point it is just a game of living your life as best you can and doing the things you want to do, and that comes down to willingness to experiment, getting helpful equipment, and teaching your friends/family how things are going to work. Because PLS progresses, what works this week won't necessarily work six months from now, so it's a moving target. Don't be afraid to get equipment that is a little cooler than what you need now, because you want to have it when you need it, not months after you need it and the insurance has finally caught up. Those months aren't something you want to waste waiting. And having equipment doesn't mean you need to use it all the time, just when you need it to empower you to do something.

The great thing is that we live in the era of the internet, so as you pass through different levels of disability you will find advice and videos from other people with disabilities on how to do just about anything with whatever ability you have. So if you come to a point where you are wondering, "hmm, how do quads put on socks?" you are just a youtube search away from videos of many different approaches to the problem, and you can pick the techniques that work best for you. People with static spinal cord injuries will blow you away with what they can accomplish, what you can, if you take the time to gain their level of skill.

You sound pretty positive, that'll be a big help.
 
Hi, and welcome, sadly, to this forum. I was diagnosed almost 4 years ago. I was very lucky to have a doctor who diagnosed me very quickly. When he made his final diagnoses he immediately sent me to Social Security. He wrote the diagnoses on a prescription form, and I was very quickly, 2 weeks, given disability. Since being on medication, my shakiness is under control, and I get around very well except when I have to walk long distances. Then I use a wheelchair because I get very short of breath. Hope this helps, and prayers are with all the members of the forum.
 
Hello, and a bittersweet welcome. I'm sorry I can't give you detailed advice, as my dad handled all of the specifics, but I do know my mom draws SSDI and has been for some time. Might have been when she had to stop working. She too got laid off- she was a preschool teacher and they made her leave because they said she couldn't keep up with the kids :(

Anyway, I'm sure you can find plenty of resources on how to go about getting SS and I do know you can.
 
Welcome to the group. Sorry for your diagnosis. My symptoms start 20+ years ago and were finally diagnosed correctly in 09. I finally tried to apply for ssdi last year because it wasn't needed till then. That have rejected me for Amy type of SS. So we figure that its in God's hands and I am 7 1/2 years before I can get my ss for being retired. Like that will ever happen!

I am sure you will do fine in getting what you need.
 
Sorry to hear about your diagnosis. I acquired PLS in 2003 and was diagnosed in 2005. I was able to work until 2009 and went on medical leave at that time. I applied for SSDI in 2011 and it was granted 6 months later. At the time I filed I had limited speech and I was confined to a PWC. The first check was large since it is from when you apply. I wanted to file on my own but my company insisted I use a service to apply. The social worker at the MDA clinic said it is fairly straight forward to do it on your own. If you have an MDA clinic near you see if they will see you. I can't say enough good things about MDA. They were the only doctors that had a clue about PLS in Dallas.
 
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