I was diagnosed with ALS in 2008 at the age of 66. Looking back, showed definite symptoms in 2007 or earlier. I had retired a few years prior after a long career in Human Resource Management that included positions in the fields of healthcare, the Federal government, higher education, and technology. Rather than slow down and enjoy retirement, I began a second career in tax and financial planning. I became an IRS Enrolled Agent (EA), and earned a Certificate in Financial Planning. I also obtained my Series 7, Series 65 securities licenses, and my Life and Health Insurance licenses. I started my own business as a tax and financial advisor and began teaching Finance, Accounting, and Investments as an Adjunct Instructor at several colleges and universities in the greater Boston area.
By 2010. I was no longer able to walk at all and had to rely solely on a power or manual chair, as well as a scooter. I decided to become involved in ALS Advocacy with the local chapter of the ALS Association. I spoke to groups of scientists at Biogen Idec in Cambridge, MA on the topic of living with ALS. I was interviewed by the Boston Globe and WBUR when Biogen discontinued the Dexpramipexole trials. I also attended the NEALS Consortium’s first Clinical Research Learning Institute held in Clearwater, FL in October 2011.
Additionally, I spoke to groups at various fundraising events sponsored by organizations such as ALSA and the ALS Therapy Development Institute (ALSTDI). I represented these organizations at ALS events at Fenway Park. Because of my visibility as a PAL, I was elected to the Board of Directors of the ALS Association’s Mass chapter, and currently serve in the capacity of Secretary.
While I am confined to a wheelchair, I still maintain my tax practice, preparing individual, corporate, and trust tax returns as well as representing clients at IRS audits. When I realized it would be too difficult to travel to and from the various campuses at which I taught, I applied and became an online instructor at the University of Phoenix. I have been teaching Personal Financial Planning since 2010. At this point, after living with the disease for 8 years, only my legs are affected. I still maintain my upper body strength and my ability to speak, swallow, breathe, etc. remains completely normal. Somehow, I can’t help but feel that this slow progression might be due in part to the upbeat, positive outlook I strive to maintain, and the fact that I keep very busy with my family, clients, students, attending online CPE seminars (to maintain my professional licenses), and ALS fundraising.
I was diagnosed with ALS in 2008 at the age of 66. Looking back, showed definite symptoms in 2007 or earlier. I had retired a few years prior after a long career in Human Resource Management that included positions in the fields of healthcare, the Federal government, higher education, and technology. Rather than slow down and enjoy retirement, I began a second career in tax and financial planning. I became an IRS Enrolled Agent (EA), and earned a Certificate in Financial Planning. I also obtained my Series 7, Series 65 securities licenses, and my Life and Health Insurance licenses. I started my own business as a tax and financial advisor and began teaching Finance, Accounting, and Investments as an Adjunct Instructor at several colleges and universities in the greater Boston area.
By 2010. I was no longer able to walk at all and had to rely solely on a power or manual chair, as well as a scooter. I decided to become involved in ALS Advocacy with the local chapter of the ALS Association. I spoke to groups of scientists at Biogen Idec in Cambridge, MA on the topic of living with ALS. I was interviewed by the Boston Globe and WBUR when Biogen discontinued the Dexpramipexole trials. I also attended the NEALS Consortium’s first Clinical Research Learning Institute held in Clearwater, FL in October 2011.
Additionally, I spoke to groups at various fundraising events sponsored by organizations such as ALSA and the ALS Therapy Development Institute (ALSTDI). I represented these organizations at ALS events at Fenway Park. Because of my visibility as a PAL, I was elected to the Board of Directors of the ALS Association’s Mass chapter, and currently serve in the capacity of Secretary.
While I am confined to a wheelchair, I still maintain my tax practice, preparing individual, corporate, and trust tax returns as well as representing clients at IRS audits. When I realized it would be too difficult to travel to and from the various campuses at which I taught, I applied and became an online instructor at the University of Phoenix. I have been teaching Personal Financial Planning since 2010. At this point, after living with the disease for 8 years, only my legs are affected. I still maintain my upper body strength and my ability to speak, swallow, breathe, etc. remains completely normal. Somehow, I can’t help but feel that this slow progression might be due in part to the upbeat, positive outlook I strive to maintain, and the fact that I keep very busy with my family, clients, students, attending online CPE seminars (to maintain my professional licenses), and ALS fundraising.
My mother Sandra was diagnosed in November of 2004. Her original symptoms started with restless legs. She had to constantly move them and had a terrible time trying to sleep. She wouldn’t be able to push weights at the gym with her legs. After that, she was limping and used a cane. When she was diagnosed, the specialist said to take your shoes and socks off. Try to lift your foot and toes. She couldn’t. He stopped and said ‘I believe you have ALS’. My heart dropped. We knew about ALS as we had a neighbor down the street who had it at a young age and passed. I was devastated. I could not believe it. My mom was upset but tried to look as upbeat as possible.
It was 9 months from her diagnosis to her passing. She went from healthy to a feeding tube and motionless. The stress my sister, father, and I had was overwhelming. I still have the email of me getting mad at the doctor who diagnosed her because he said that she could live from 2 to 5 years and she passed so soon. It wasn’t his fault. I was just crushed. A big problem was medical assistance. It took months to get her on state insurance for low income. We practically begged services for a wheelchair and any assistance. It was horrible. Now I am having issues with my muscles and joints. It could be just arthritis or something else but all I fear is ALS. I never want my wife or children to see what I saw and go through what I went through. I held my mom’s hand when she passed at the hospital. I don’t want my loved ones to have to do the same for me. We must all do whatever is possible to fund research and provide care for people living with ALS.
My mother Sandra was diagnosed in November of 2004. Her original symptoms started with restless legs. She had to constantly move them and had a terrible time trying to sleep. She wouldn’t be able to push weights at the gym with her legs. After that, she was limping and used a cane. When she was diagnosed, the specialist said to take your shoes and socks off. Try to lift your foot and toes. She couldn’t. He stopped and said ‘I believe you have ALS’. My heart dropped. We knew about ALS as we had a neighbor down the street who had it at a young age and passed. I was devastated. I could not believe it. My mom was upset but tried to look as upbeat as possible.
It was 9 months from her diagnosis to her passing. She went from healthy to a feeding tube and motionless. The stress my sister, father, and I had was overwhelming. I still have the email of me getting mad at the doctor who diagnosed her because he said that she could live from 2 to 5 years and she passed so soon. It wasn’t his fault. I was just crushed. A big problem was medical assistance. It took months to get her on state insurance for low income. We practically begged services for a wheelchair and any assistance. It was horrible. Now I am having issues with my muscles and joints. It could be just arthritis or something else but all I fear is ALS. I never want my wife or children to see what I saw and go through what I went through. I held my mom’s hand when she passed at the hospital. I don’t want my loved ones to have to do the same for me. We must all do whatever is possible to fund research and provide care for people living with ALS.
My 39-year-old sister was recently diagnosed with ALS. It’s heartbreaking to watch her health decline and know there are no options for even trying to fight this disease. We are also finding that the age of diagnosis is getting younger and younger. And I’m not sure if this is the platform, but ALS should be a reportable disease. That way, it will hopefully increase the funding for research on the disease itself, which could lead to treatments and even a cure.
My 39-year-old sister was recently diagnosed with ALS. It’s heartbreaking to watch her health decline and know there are no options for even trying to fight this disease. We are also finding that the age of diagnosis is getting younger and younger. And I’m not sure if this is the platform, but ALS should be a reportable disease. That way, it will hopefully increase the funding for research on the disease itself, which could lead to treatments and even a cure.
I never expected that my mom would be diagnosed with ALS in July 2019. I was only a sophomore in high school when my mom started needing care. Fast forward four years and through a pandemic and I am my mom’s full-time caregiver with some help from hospice. It’s been a challenge not only for my mom and I, but for our whole family. I am currently juggling being a full-time college student and caregiver. But although it’s been a struggle, I want people to know it’s possible to do all of these things and still have a positive outlook. What my mom is battling is hard, but we do what we can to make sure she has the best life possible. As for me, I want to make sure teens that are going through this know that they aren’t alone, and they can face these challenges. There are only 24 hours in a day, we can all do our part to spread awareness about ALS and try to be positive no matter what life throws at us!
I never expected that my mom would be diagnosed with ALS in July 2019. I was only a sophomore in high school when my mom started needing care. Fast forward four years and through a pandemic and I am my mom’s full-time caregiver with some help from hospice. It’s been a challenge not only for my mom and I, but for our whole family. I am currently juggling being a full-time college student and caregiver. But although it’s been a struggle, I want people to know it’s possible to do all of these things and still have a positive outlook. What my mom is battling is hard, but we do what we can to make sure she has the best life possible. As for me, I want to make sure teens that are going through this know that they aren’t alone, and they can face these challenges. There are only 24 hours in a day, we can all do our part to spread awareness about ALS and try to be positive no matter what life throws at us!
My wife, Lyn, was diagnosed with ALS in the fall of 2017. We were enjoying our retirement after working all our lives to get there. It came as a shock out of nowhere. For the next 2+ years, we fought the fight. If there’s any good news with the disease, it’s that there is no physical pain, but mental stress is a daily challenge for the person with ALS and the caregiver. ALS takes over your lives. Loss of extremities. Loss of ability to eat and drink. Loss of ability to perform personal care and toileting. The person keeps their cognition and ability to see. Death occurs when the muscles that control breathing stop functioning. I was with Lyn day and night as she suffered. She was the bravest person I know. She left me one morning as I held her hand. That was over 3 years ago and I miss her every day. We should have been able to enjoy our remaining days together. I will continue the fight against ALS for as long as I live.
My wife, Lyn, was diagnosed with ALS in the fall of 2017. We were enjoying our retirement after working all our lives to get there. It came as a shock out of nowhere. For the next 2+ years, we fought the fight. If there’s any good news with the disease, it’s that there is no physical pain, but mental stress is a daily challenge for the person with ALS and the caregiver. ALS takes over your lives. Loss of extremities. Loss of ability to eat and drink. Loss of ability to perform personal care and toileting. The person keeps their cognition and ability to see. Death occurs when the muscles that control breathing stop functioning. I was with Lyn day and night as she suffered. She was the bravest person I know. She left me one morning as I held her hand. That was over 3 years ago and I miss her every day. We should have been able to enjoy our remaining days together. I will continue the fight against ALS for as long as I live.