Multiple Sclerosis Newsletter
Fall 2023
HAPPY HOLIDAYS FROM THE MS COMMITTEE!
As a person living with MS, it is important to understand that the stressors of the season can lead to new or worsening symptoms. Making a list, setting a budget, smart travel planning, resisting overeating and learning how to just say no will help you reduce stress and enjoy the holidays. Here are some tips for managing holiday stress.
ORIGIN STORIES
Everyone’s MS journey is different, starting with your first symptoms and the steps you took to get your diagnosis. Please consider submitting your story for inclusion in a future newsletter. You have no idea how inspiring it can be for a newly diagnosed person to read a story that they can relate to. Consider what you wish someone had told you and be that person for someone else. Thanks to those of you who have contributed, including Dr Jocelyn Blackwell, who is featured this month. Let us hear from you! Keep it to about 400 words and send us a photo, ‘then’ or ‘now,’ to go with it! Submit drafts to Ben Hofmeister (bahof18d@gmail.com).
Everyone’s MS journey is different, starting with your first symptoms and the steps you took to get your diagnosis. Please consider submitting your story for inclusion in a future newsletter. You have no idea how inspiring it can be for a newly diagnosed person to read a story that they can relate to. Consider what you wish someone had told you and be that person for someone else. Thanks to those of you who have contributed, including Dr Jocelyn Blackwell, who is featured this month. Let us hear from you! Keep it to about 400 words and send us a photo, ‘then’ or ‘now,’ to go with it! Submit drafts to Ben Hofmeister (bahof18d@gmail.com).
Interested in becoming a PVA MS Mentor? We Need You
As a Veteran with MS, you are in a unique position to help those who've recently been diagnosed with MS and whose world has been turned upside down just like yours was at one point. PVA's MS Peer Mentor program hopes to bring Veteran role models and peers together to help those cope and thrive with a diagnosis of MS. No one understands what it is like to live with MS better than another Veteran with MS. Through the Christopher Reeve Foundation, PVA is providing training on being a Peer Mentor through an accredited on-line training program which is recognized by the VA. If you are interested in becoming a Peer Mentor, please reach out to Anne Robinson at ARobinson@pva.org.We Need Your Input… Join an MS Committee Team TODAY!
As we work on initiatives, we need more input and assistance from you. While we don’t need you to get involved with everything, we do need you to think about ways you can participate! Check out more about our MS Committee Teams below.National MS Society Webpage for Veterans
Our Veterans with Multiple Sclerosis webpage includes information and links to Veterans resources including our Virtual Veterans-Self-Help-Group, Military Members, Care Partners and Ask an MS Expert Veterans Program. Please forward this newsletter to direct Veterans to the webpage and other resources.
Recreation Team
We know MS presents unique challenges when it comes to participating in traditional sports and recreational activities. Among some of the events we’d love to coordinate or highlight include: a PVA MS Committee Retreat, similar to the annual PVA Women Veterans Empowerment Retreat, as well as Chapter-led events like local MS Walks. This team will work with PVA’s Sports & Recreation Department to explore and organize new opportunities for Veterans living with MS.
We know MS presents unique challenges when it comes to participating in traditional sports and recreational activities. Among some of the events we’d love to coordinate or highlight include: a PVA MS Committee Retreat, similar to the annual PVA Women Veterans Empowerment Retreat, as well as Chapter-led events like local MS Walks. This team will work with PVA’s Sports & Recreation Department to explore and organize new opportunities for Veterans living with MS.
Newsletter Team
Ben Hofmeister from the Mid-South Chapter and Sarah LaBrada from the California Chapter head up our MS newsletter efforts. If you are interested in helping out, writing an article, or have questions about what you read, email us at MSCommittee@PVA.org.
Ben Hofmeister from the Mid-South Chapter and Sarah LaBrada from the California Chapter head up our MS newsletter efforts. If you are interested in helping out, writing an article, or have questions about what you read, email us at MSCommittee@PVA.org.
RESEARCH PRIORITIES FOR VETERANS WITH MS
On October 2nd, MS Committee members Bob Clinton, Joe Bludeau and Izzy Abbass participatedin a two-hour webinar convened by the VA’s MS Centers of Excellence to discuss the short and mid-term research priorities for Veterans living with MS.
The event included some friends of ours from the VA’s MS program including Dr. Lindsay Wooliscroft, Michelle Cameron, Heidi Maloni, Mitch Wallin, and Frances Bagnato as well as Stan Nui from the DoD’s Congressionally Directed MS Research Program, and VA MS experts from around the country. Bob, Joe, and Izzy were able to provide the Veteran’s perspective for this engaged and enlightening discussion.
This webinar analyzed an in-depth survey conducted by 1,200 veterans living with MS receiving their care from VA facilities across the country, in which many of you of you were participants. The responses gathered and grouped together, with the 12 most frequently mentioned and prioritized, were the subject of this webinar. Our goal was to discuss and prioritize these 12 focus areas. A few of the priorities we looked at included:
On October 2nd, MS Committee members Bob Clinton, Joe Bludeau and Izzy Abbass participatedin a two-hour webinar convened by the VA’s MS Centers of Excellence to discuss the short and mid-term research priorities for Veterans living with MS.
The event included some friends of ours from the VA’s MS program including Dr. Lindsay Wooliscroft, Michelle Cameron, Heidi Maloni, Mitch Wallin, and Frances Bagnato as well as Stan Nui from the DoD’s Congressionally Directed MS Research Program, and VA MS experts from around the country. Bob, Joe, and Izzy were able to provide the Veteran’s perspective for this engaged and enlightening discussion.
This webinar analyzed an in-depth survey conducted by 1,200 veterans living with MS receiving their care from VA facilities across the country, in which many of you of you were participants. The responses gathered and grouped together, with the 12 most frequently mentioned and prioritized, were the subject of this webinar. Our goal was to discuss and prioritize these 12 focus areas. A few of the priorities we looked at included:
- Identifying biomarkers, and developing therapies for promoting remyelination,
- Halting MS progression,
- Improving gait and fall reduction,
- Causes and therapies for managing fatigue, and
- Understanding if Disease Modifying Therapies (DMTs) should be reduced for older Veterans.
RESOURCES
Stem Cell Therapy for MS
Stem cell therapy is an experimental procedure being studied in MS as a way to “reset” the immune system so that it is less likely to attack myelin. Since the first human studies in 1995, stem cell therapy has shown great potential for preventing MS disease activity, but with risks of serious complications. Ongoing studies are trying to determine which people with MS will benefit most from stem cell therapy, and which stem cell therapy methods are safest and most effective. Read the article.Download Resources
Find articles and brochures about services available to veterans with MS.VA MSCOE “An Overview of MS” - MS Educational Flyers and Brochures
National MS Society Patient Brochures - All Brochures
National MS Society Clinician Publications - Clinical Care Publications
CanDo-MS Programs and services, including the schedule for their 2024 webinars, an exercise program and regular Q&A sessions.
MS STORY: JOCELYN BLACKWELL, M.D.
I was a family physician in the U.S. Army. In September 2006, I deployed in support of Operation Iraqi Freedom. In November 2006, just before Thanksgiving, I went for a run outdoors. When I came inside, it was a little dark – the way it appears a bit dark inside after being out in the sun. After a few minutes, everything cleared up except for a section of vision in my right eye.
I ignored it, but after a few days I became concerned, so I went to our on-base optometrist. During the testing where you close one eye and read a chart with the other, I couldn’t see anything with the right eye. The optometrist sent me straight to the ophthalmologist at Ibn Sina in Baghdad. His testing showed the same thing, so I was medevacked to Landstuhl Regional Medical Center in Landstuhl, Germany.
The testing done by the ophthalmologist in Landstuhl revealed I had optic neuritis in my right eye. In medical school, I had encountered a test question where a patient with optic neuritis was eventually diagnosed with multiple sclerosis, so I knew what I had. No one else would make the diagnosis, though, so I was treated for optic neuritis and medevacked back home stateside.
Three years went by, and I started having numbness from the waist down, so I saw a neurologist at Walter Reed Army Medical Center in Washington, D.C. That neurologist did not diagnose me with multiple sclerosis, either, so I threw up my hands and deployed to Iraq again from October 2009 through October 2010. I had symptoms while deployed (hand weakness, loss of arm proprioception – knowing where the arm is in space), but I said nothing.
After I returned stateside in Fall 2010, I went for a second opinion at Johns Hopkins Medical Center in Baltimore, Maryland. I sent them all records and tests; I even wrote a letter to the department Chief describing the case, and had my doctor friend sign the letter.
I was seen at Johns Hopkins in January 2011, and was finally diagnosed with MS. The neurologist mentioned how quick and easy the diagnosis was just using previous records.
After my diagnosis, I was finally able to start treatment. Eventually my symptoms progressed enough that I was medically retired from the U.S. Army in February 2015.
Looking back, it was a frustrating process (and not one I would wish on anyone), but I think everything happened the way it did for a reason. I always tell myself, and anyone else newly diagnosed, that MS is a life-changing diagnosis, but it is NOT a life-ending diagnosis.
I ignored it, but after a few days I became concerned, so I went to our on-base optometrist. During the testing where you close one eye and read a chart with the other, I couldn’t see anything with the right eye. The optometrist sent me straight to the ophthalmologist at Ibn Sina in Baghdad. His testing showed the same thing, so I was medevacked to Landstuhl Regional Medical Center in Landstuhl, Germany.
The testing done by the ophthalmologist in Landstuhl revealed I had optic neuritis in my right eye. In medical school, I had encountered a test question where a patient with optic neuritis was eventually diagnosed with multiple sclerosis, so I knew what I had. No one else would make the diagnosis, though, so I was treated for optic neuritis and medevacked back home stateside.
Three years went by, and I started having numbness from the waist down, so I saw a neurologist at Walter Reed Army Medical Center in Washington, D.C. That neurologist did not diagnose me with multiple sclerosis, either, so I threw up my hands and deployed to Iraq again from October 2009 through October 2010. I had symptoms while deployed (hand weakness, loss of arm proprioception – knowing where the arm is in space), but I said nothing.
After I returned stateside in Fall 2010, I went for a second opinion at Johns Hopkins Medical Center in Baltimore, Maryland. I sent them all records and tests; I even wrote a letter to the department Chief describing the case, and had my doctor friend sign the letter.
I was seen at Johns Hopkins in January 2011, and was finally diagnosed with MS. The neurologist mentioned how quick and easy the diagnosis was just using previous records.
After my diagnosis, I was finally able to start treatment. Eventually my symptoms progressed enough that I was medically retired from the U.S. Army in February 2015.
Looking back, it was a frustrating process (and not one I would wish on anyone), but I think everything happened the way it did for a reason. I always tell myself, and anyone else newly diagnosed, that MS is a life-changing diagnosis, but it is NOT a life-ending diagnosis.
ABOUT PVA'S MS COMMITEE
National MS Committee Members
Izzy Abbass – Co-Chair
Ken Ness – Co-Chair
Joe Bludeau – External Organizations Coordination
Jerrod Harris – Chapter MS Lead Liaison
Mike Partridge – Committee Member
Ben Hofmeister – Committee Member/Newsletter Editor
Ken Ness – Co-Chair
Joe Bludeau – External Organizations Coordination
Jerrod Harris – Chapter MS Lead Liaison
Mike Partridge – Committee Member
Ben Hofmeister – Committee Member/Newsletter Editor
PVA Staff
Cheryl Vines – Director of Research and Education
Juliet Pierce – Associate Director of Medical Services
Juliet Pierce – Associate Director of Medical Services
PVA Chapter MS Lead
(By Location and Name)
PVA Chapter MS Leads (By Location and Name)
To contact your chapter MS lead, please call or email Jerrod Harris at 410-635-0145 or jharris@colonialpva.org or reach out to your local PVA Chapter office.
We are still looking for Leads for the Lone Star, Kentucky Indiana, Bayou Gulf States and Puerto Rico chapters. If you would like to step up and become a lead, contact Jerrod for more details.
To contact your chapter MS lead, please call or email Jerrod Harris at 410-635-0145 or jharris@colonialpva.org or reach out to your local PVA Chapter office.
We are still looking for Leads for the Lone Star, Kentucky Indiana, Bayou Gulf States and Puerto Rico chapters. If you would like to step up and become a lead, contact Jerrod for more details.
PVA is a 501(c)(3) tax-exempt, non-profit organization.
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