Moving Without Researching

By CommunityMemberce70da

2 min read

Being a disabled veteran diagnosed with MS in 1980, I've experienced many years of relapsing MS. I had good days, bad days, and some with what almost felt like no MS. That all changed in 2015-17 when I began transitioning into secondary progressive.

I decided to move closer to my family

For 35-40 years my MS didn't require a lot of supervision or guidance and the VA "my healthcare provider" seemed adequate, caring, and engaged me. Secondary progressive MS is a whole different evil adversary. Following advice from physicians I was seeing, I moved closer to family. I had the choice of many cities and VA medical care. Because of the past it never once entered my mind to research MS healthcare capabilities at VA facilities. My relapsing MS as far as I was concerned was well understood, cared for, and treatment was available.

What I wish I would have researched

Upon arrival at my new home, I didn't alter in any way my process of seeking healthcare at VA. This was a clinic not a medical center and all possibility of being treated on-site and by VA-employed physicians was zero. Community care was the norm and I was familiar with this so no foul...right ?! Community care had no idea what secondary progressive MS was or for that matter, what MS was period. For the next 4 years, I haven't seen one neurologist and have been denied, delayed, and basically ignored for medical care. Gaslighting, intimidation, bullying, and retaliation for my complaints and attempts to find a caring executive director up the chain of command, which all promised return phone calls but NEVER happened.

I wish I had moved closer to an MS specialist

If you have MS or any other disease or disability that requires a certain amount of specific specialty care do not I repeat do not move to any area that doesn't include said disabilities on their home page. I blame myself but I also learned that receiving help from VA facilities hundreds of miles away is extremely difficult. VA employees at medical centers miles away from your clinic WILL NOT cross ANY lines, call and advise your clinic, or help you in any way, in my experience. They listen to your inadequate treatment experiences and are sympathetic and apologetic, but in the end, they won't help you. Go to LARGE medical centers again with treatment for your problems listed in the treatment provided. My health has declined 40-50% in 4-5 years and now after my neglected medical care and my approaching 70 years of age I have no other options but to pack up and move again! So much could have been prevented and years of my life not lost! Do the work, research, call everyone and everything to confirm, and be assured you will find correct, competent medical care.

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Erin Rush Community Admin
I am so glad you shared this, <inline-mention username="CommunityMemberce70da" user-id="4824666"/>! I think we always need more input from community members that have an understanding of the inner workings of the VA healthcare system, since many of us aren't very informed on it. I am so sorry you have been subjected to what can be called at best, supbar care. And at worst, neglect and bullying. That's not right on any level and especially after your years of service, with the understanding that your country would take care of your health in a timely, safe, manner. You deserve better! Best, Erin, Team Member.
cocomom Member
This is so important. I hope people read this and understand. We all need to think about future and finances, whether we have MS or not. The added components of moving are astronomical to me. I was widowed at 45, had to learn how to run our business by myself, finished raising four sons and deal with menopause all at the same time. Being a single parent now, my will and end-of-life decisions needed to be made immediately. I was the only one left. I thought that was a challenging and new experience, that I took care of. I was good to go. Until, 10 years later, I woke up and was paralyzed on one side of my body. MS had blossomed. Now, I had to wrap my head around MS, being forced to stop work, Learning to deal with the myriad of symptoms and another new life. I am now 65, walking, learning how to exercise for my body at this time, Figuring out if cognitive issues are MS or age. Forget dating, I gave that up about five years ago. I forced myself to live only on disability, by myself. It was something I had to prove to myself. I did well for about four years. Now, I know I need to move. Due to fear of falling in shower, and not being able to keep up with it. This will probably be the last move that is done voluntarily. My children ask, why do you have to move? What’s the issue with finding a new place to live? Why are you making it so hard and difficult? It’s not like just picking out a good school district. These are the issues/needs that need to be considered when moving. 1. An MS specialist. 2. High rated hospital. 3. Transit system available. 4. Income restricted living/ or living as a “Golden Girl.” 5. The county needs to be a Senior/ Disabled friendly area. Meaning, I can be eligible for benefits to help, due to the fact that I am in a low income bracket. 6. INSURANCE!!!! What type of insurance is open and available in that county. I’m sure there are many other items that need to be checked off. The sad part is, before MS, family close by would’ve been number one. I am looking for a place that is convenient for my family to visit, but emotions and family can’t be First anymore. Of everything that a mess has delivered, something good has come of it, but not putting family first has broken my heart. Thank you for sharing your story. It is important and everyone is going to have to deal with it one day.
1. Erin Rush Community Admin
 <inline-mention username="cocomom" user-id="4073760"/>, I am sorry you are facing this unwelcome move, but I do hope you find a place that meets your criteria. I think you're wise to be thinking ahead and not just moving without doing research first. I hope your kids understand why you are doing this and support you. I know they must love you and be worried, but I hope they come around a little more. You are one tough lady; I'll have no doubt you will get this figured out. However, I wish our country were more thoughtful and proactive in supporting everyone, including our older populations and our populations with disabilities. Best, Erin, Team Member.