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My now 17 year old son suffers from Absence seizures and is resistant to all medication. He has at least three seizures per week. At this point we are exploring surgery but we have been told that he will probably never drive and we are wondering how he will ever hold a job. We live in New Jersey and we don't know if he will qualify for any disability programs. Has anyone qualified for any disability programs and if so how did you get started? Thank you.

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Hello. My now 26-year-old

Submitted by Rdb on Mon, 2019-10-21 - 13:22

Hello. My now 26-year-old son was diagnosed at age 20. He has medically-resistant, bi-temperol, focal epilepsy. His epilepsy got continually worse over the years as he became resistant to the meds. He has an RNS device implant (from Neuropace)- by Mayo Clinic in Phoenix - November 2018. You are right to wonder so many things about your son's future. I've had all the same thoughts and worries. My son hasn't driven for 2+ years now. He doesn't work, and he live at home with us. In the beginning of his epilepsy, his seizures seemed to be controlled by Keppra for about 2 years. During that time he worked, and lived on his own. The keppra had terrible side effects, profound depression being the worst. So, my son qualifies and receives SSI (Supplemental Security Income). https://www.ssa.gov/ssi/ We applied in June 2018, and learned in October, he qualified. We initially received 4 months as they back-dated it to June. He receives a monthly check now, and it has helped tremendously. We have also applied for SSDI which is the Social Security Disability Insurance. He may qualify for a small amount since he did work for a few years. It takes a long time - we expect 2+ years to find out. And we are working with a Disability Attorney for that. They are capped at what they can charge, so it's not expensive to use them. When I began investigating Social Security for my son, all the lawyers told me to go to the website and fill out the forms first. Then, when you get denied the first time (over 60% of the cases in AZ get denied, it's very common). Then, we call the lawyer and they help from that point. It was relatively easy for my son to get qualified for SSI. It's the SSDI that is more challenging. The forms are tremendously long to fill out, and you have to tell them about all your medical visits, tests, etc. It's laborious, but very worth it, and I suggest start now as it takes a long time. I refrain from using the words 'never.' LIke 'he'll never drive again.' Especially with surgery. I think there's a lot that can happen for the best. I also recommend listening to the "Seizing Life" podcasts from CURE. Become as educated as you can. Godspeed to you and your son.

Hello.  My now 26-year-old son was diagnosed at age 20.  He has medically-resistant, bi-temperol, focal epilepsy.  His epilepsy got continually worse over the years as he became resistant to the meds.  He has an RNS device implant (from Neuropace)- by Mayo Clinic in Phoenix - November 2018.  You are right to wonder so many things about your son's future.  I've had all the same thoughts and worries.  My son hasn't driven for 2+ years now.  He doesn't work, and he live at home with us.  In the beginning of his epilepsy, his seizures seemed to be controlled by Keppra for about 2 years. During that time he worked, and lived on his own.  The keppra had terrible side effects, profound depression being the worst.  So, my son qualifies and receives SSI (Supplemental Security Income).  https://www.ssa.gov/ssi/    We applied in June 2018, and learned in October, he qualified.  We initially received 4 months as they back-dated it to June.  He receives a monthly check now, and it has helped tremendously.  We have also applied for SSDI which is the Social Security Disability Insurance.  He may qualify for a small amount since he did work for a few years.  It takes a long time - we expect 2+ years to find out. And we are working with a Disability Attorney for that.  They are capped at what they can charge, so it's not expensive to use them.   When I began investigating Social Security for my son, all the lawyers told me to go to the website and fill out the forms first.  Then, when you get denied the first time (over 60% of the cases in AZ get denied, it's very common). Then, we call the lawyer and they help from that point.  It was relatively easy for my son to get qualified for SSI.  It's the SSDI that is more challenging.  The forms are tremendously long to fill out, and you have to tell them about all your medical visits, tests, etc.  It's laborious, but very worth it, and I suggest start now as it takes a long time.    I refrain from using the words 'never.'  LIke 'he'll never drive again.'   Especially with surgery.  I think there's a lot that can happen for the best.   I also recommend listening to the "Seizing Life" podcasts from CURE.  Become as educated as you can.  Godspeed to you and your son.

Hello. My now 26-year-old son was diagnosed at age 20. He has medically-resistant, bi-temperol, focal epilepsy. His epilepsy got continually worse over the years as he became resistant to the meds. He has an RNS device implant (from Neuropace)- by Mayo Clinic in Phoenix - November 2018. You are right to wonder so many things about your son's future. I've had all the same thoughts and worries. My son hasn't driven for 2+ years now. He doesn't work, and he live at home with us. In the beginning of his epilepsy, his seizures seemed to be controlled by Keppra for about 2 years. During that time he worked, and lived on his own. The keppra had terrible side effects, profound depression being the worst. So, my son qualifies and receives SSI (Supplemental Security Income). https://www.ssa.gov/ssi/ We applied in June 2018, and learned in October, he qualified. We initially received 4 months as they back-dated it to June. He receives a monthly check now, and it has helped tremendously. We have also applied for SSDI which is the Social Security Disability Insurance. He may qualify for a small amount since he did work for a few years. It takes a long time - we expect 2+ years to find out. And we are working with a Disability Attorney for that. They are capped at what they can charge, so it's not expensive to use them. When I began investigating Social Security for my son, all the lawyers told me to go to the website and fill out the forms first. Then, when you get denied the first time (over 60% of the cases in AZ get denied, it's very common). Then, we call the lawyer and they help from that point. It was relatively easy for my son to get qualified for SSI. It's the SSDI that is more challenging. The forms are tremendously long to fill out, and you have to tell them about all your medical visits, tests, etc. It's laborious, but very worth it, and I suggest start now as it takes a long time. I refrain from using the words 'never.' LIke 'he'll never drive again.' Especially with surgery. I think there's a lot that can happen for the best. I also recommend listening to the "Seizing Life" podcasts from CURE. Become as educated as you can. Godspeed to you and your son.

Hi, Thanks so much for

Submitted by Anonymous on Tue, 2019-10-22 - 16:45

Hi, Thanks so much for posting and we understand your concerns. Your son’s epilepsy team will discuss what options are possible for him and will help guide you all through the proper evaluation and testing, prior to making a decision about surgery. It’s important that you continue to express any concerns you may have and talk with his epilepsy team about personal goals and expectations for epilepsy surgery.https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsA key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-services In many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs. Find your local Epilepsy Office, here: epilepsy.com/localsupport Explore the employment section of our website, to help manage the impact of epilepsy on work, learn more about legal rights and reasonable accommodations: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-know It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’retaking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Additionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline

Hi,  Thanks so much for posting and we understand your concerns. Your son’s epilepsy team will discuss what options are possible for him and will help guide you all through the proper evaluation and testing, prior to making a decision about surgery. It’s important that you continue to express any concerns you may have and talk with his epilepsy team about personal goals and expectations for epilepsy surgery.https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsA key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-services In many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs. Find your local Epilepsy Office, here: epilepsy.com/localsupport Explore the employment section of our website, to help manage the impact of epilepsy on work, learn more about legal rights and reasonable accommodations: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-know It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’retaking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Additionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline  

Hi, Thanks so much for posting and we understand your concerns. Your son’s epilepsy team will discuss what options are possible for him and will help guide you all through the proper evaluation and testing, prior to making a decision about surgery. It’s important that you continue to express any concerns you may have and talk with his epilepsy team about personal goals and expectations for epilepsy surgery.https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsA key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-services In many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs. Find your local Epilepsy Office, here: epilepsy.com/localsupport Explore the employment section of our website, to help manage the impact of epilepsy on work, learn more about legal rights and reasonable accommodations: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-know It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’retaking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Additionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline

Hello, is the Podcast of CURE

Submitted by backe777@gmail.com on Sun, 2019-11-10 - 22:09

Hello, is the Podcast of CURE, from CURE international ? I will check it out.Do you know of any facebook private groups for parents and caregivers ?Thank you in advance.