42 posts tagged “sclerosis”

Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Posted June 22nd, 2015 by

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below.

Hi Ashleigh! Tell us a little about yourself and your husband.
Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

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Getting to know our Team of Advisors – Charles

Posted June 8th, 2015 by

We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors.

About Charles (aka CharlesD):
Charles has a diverse background. He served three years in the US Army 75th Ranger Regiment parachuting from the back of C-130 and C-141 aircraft. He built audio/video/computer systems for Bloomberg Business News. He worked as an application systems engineer in banking, as a computer engineer at the White House Executive Office of the President (EOP), and as a principal systems engineer for the US Navy Submarine Launched Ballistic Missiles (SLBM) program. He is currently a contractor providing document imaging Subject Matter Expertise (SME) to the IRS. Charles was diagnosed with MS in July of 2013. MS runs in his family on his mother’s Irish side – he has one uncle and two male cousins with MS.

Charles on patient centeredness:
With experience in website design, Charles believes patient centeredness is a lot like user centeredness when designing a web site or a portal: “Information is organized according to the patient (or the user’s) view of the world. Questions that the patient most needs answered are listed front and center. The design is based on addressing the needs of the patients (users). Info is organized cleanly and logically with possible visual impairments, color perception problems, and cognitive issues of patients (users) always in mind. Research should focus on areas that will make the most difference to the patients. Ask them. Survey them. Get to know the ‘voice of the patient’ just like we look to capture the ‘voice of the customer’ in user-centric design.”

Charles’ military background:
“I joined the US Army in 1986. I did basic training and AIT at Fort Jackson, SC. After that I was off to 3 weeks of jump school at Fort Benning, GA. Then I went to the Ranger Indoctrination Program (RIP) again at Benning. I was then assigned to HHC 75th Ranger Regiment.

I spent 3 years with the 75th training for a lot of pretty cool missions. We trained a lot for airfield seizures. Basically parachute onto a foreign airport or airfield, wipe out all resistance, take the tower, and make way for our big planes to land shortly after. We had early generation night vision goggles (NVGs). I drove a Hummer full of Rangers off the back tail ramp of a pitch black C-130 that was still rolling after touchdown while wearing NVGs. They were no help at all inside the plane since they only amplify existing light. If you are pitch black you are still blind. It is a wonder that I did not kill anyone or damage the C-130 that night.

So I joined up right after Grenada and I got out right before Panama. I never saw any combat. These days I volunteer my time with, and financially support, a veterans group called gallantfew (www.gallantfew.org), started by retired Ranger Major Karl Monger.”

Charles on being part of the Team of Advisors:
“Being on the PatientsLikeMe Team of Advisors has been a wonderful privilege and an excellent opportunity for me. As a person with a brain disease, it is not always comfortable talking with others about my illness. When the Team of Advisors first met up together in Boston, I knew that I had found my second family. I was together in a room where every single person there was struggling with one or more diseases, many of which can be fatal. In fact, one of our team members, Brian, died after serving for only a few months. It was such a warm and welcoming environment. All of us were able to speak openly with each other and with PatientsLikeMe staff and we were heard. Each story, no matter how painful, resonated with the whole group.

All of us in the first PatientsLikeMe Team of Advisors shared many of the same goals. We are an extremely diverse group, but we all bonded immediately. What we want is to help conquer the diseases that have caused problems in all of our lives. We want to improve the relationship between researchers and the patient community. We want to help health care providers to better understand the patient perspective. And we want to make the world a better place for the next generation and for all generations to come. PatientsLikeMe embraces those goals and we embrace PatientsLikeMe. Together we are taking on all diseases.”

Charles on healthcare for veterans:
“As a veteran, health care issues are very important to me. I have seen so many veterans return home with wounds to body and mind. Many are shattered and have no idea what to do with themselves next. Some turn to drugs and alcohol, others to fast motorcycles or weapons. Suicide is rampant among newly returned veterans. The VA is woefully underfunded to take on the mission of supporting wounded and traumatized veterans. In the halls of Congress, the VA is seen as a liability, an unfunded mandate. Many veterans are denied the coverage they so desperately need. Many active duty service members are forced out with other than honorable discharges for suffering from PTSD or TBI. This limits the liability of the VA to support the veteran after separation. A good friend of mine who died recently put it this way. He said to me, ‘The military operates on the beer can theory of human resources. Picture a couple of good old boys out for a good time. They go down to the local liquor store and grab a nice cold six pack of beer. They go down to the lake, they each pop the top and they each start chugging a wonderful ice-cold beer. When they get through the first beer, they crush the can and throw it away. They grab another and another until the beers are all gone.’

I didn’t understand how this related to the military. He explained, ‘The brand new ice-cold beer is like a new recruit. The military sucks everything they can out of the person until all that is left is the empty shell. Then they toss that out and go grab another one just like the last one.’

We don’t deserve a health care system that treats returning veterans as empty shells. We can do better, but the current system is clear reflection of the value system at play in Congress. Funding for weapons programs are highly protected. Funding for the people who wielded those weapons systems is not. My answer may seem a bit cynical, but that is how I see the current state of affairs.”

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