Mills Family MS Waiting Game

My husband Louie has had Multiple Sclerosis for 9 years, but it didn't begin rapidly progressing until November 2016. The last year and a half have rocked our family. Louie's job was able to accommodate the changes in his health for the first 9 months with each attack that would happen, but last October, an attack on his cognition, memory, and mental health caused him to no longer be able to work. Louie went from being happy-go-lucky, friendly, but introverted to having extreme mood swings, with debilitating agoraphobia and anxiety. On the physical side, he experiences weakness and spasticity in his legs as well as trouble sleeping, processing auditory information, and peripheral vision. He was also rear ended on the freeway in November which has caused a lot of anxiety related to driving, so Louie no longer drives himself further than a few minutes or in heavy traffic. Luckily, he was approved for short term disability leave from his job, but it's not enough for us to live on, and our savings has been depleted. Now, we're playing the waiting game. Louie proudly served in the United States Army for 6 years and through two deployments before he was diagnosed with Multiple Sclerosis and medically retired in 2009. We are applying for Louie's disability status to be moved up to 100% with Veteran's Affairs. When he was diagnosed, they rated him at a 30% but he has lost a lot of physical and especially mental/cognitive capabilities. It takes time for the VA to review his disability case, proceed with further physical evaluation, raise his disability status, and then for the first check to get to us. The application we're working on for SSI also takes time to work through, get reviewed, and approved. We tried to apply for me (Amanda) to get a caretaker stipend, but because Louie's MS is categorized with the VA as a "combat-related illness" instead of a "combat-related injury", we're not eligible. Louie will most likely never be able to work in his field again and probably only part-time regardless of the field. It's been an adjustment, and the financial instability has caused a lot of stress, which of course exacerbates his MS symptoms. Medical bills, therapies for our special needs kiddos, as well as the normal bills and expenses, are piling up. I feel like I've tried just about everything to help my family and it's very discouraging when it's just not enough.  We've had to downsize a lot of the things that our kids really need as well, just to be able to pay our utilities and get Louie's psychiatric needs met. We had to take our oldest son, Brodie, out of Occupational and Speech Therapy, our daughter Amelia out of Occupational Therapy, and have postponed ENT tongue tie surgery and allergy services for Calvin because we simply can't afford it. I have also had to drop my Physical Therapy and most of the treatments that help my back problems and Fibromyalgia for the same reasons. We also are not able to keep Louie and our two oldest kids in aquatic therapy because of lack of funds. It helps everybody in our family with therapy and exercise- Louie's symptoms come back when he exercises or spends any time in the heat, so the pool is vital for him to remain healthy and active. Aquatic therapy has also helped both of our kids, with Brodie's Dyspraxia and Autism and Amelia's Sensory Processing Disorder, the kids' behavior and fine/gross motor skills are much better when they spend time in the pool.  I know we are a very medically complex family. A lot of you may not have known about any of this. Anything you can or are willing to give will help us be able to bridge the gap until our steady, although fixed, income comes through. I know that God is watching out for our family and has helped us so much as we've transitioned from Louie working to being at home. Him being home has blessed our family and made us a lot closer. We just need a little bit of help for a little bit of time. Multiple Sclerosis is an unpredictable disease and no matter how much we thought we had prepared for it, the last year and a half has destroyed all our efforts. Thank you for reading, and for your prayers, thoughts, and donations. We love you.

Donations

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  • Tony Pente 
    • $100 
    • 33 mos
  • Anonymous 
    • $300 
    • 35 mos
  • Diane & Nic Wheeler 
    • $100 
    • 35 mos
  • Leslie Taylor 
    • $50 
    • 35 mos
  • Madeline Zecman 
    • $50 
    • 35 mos
See all

Organizer

Amanda Mills 
Organizer
Sierra Vista, AZ
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