Alison Needs Your Help
Family and friends of Alison Largent are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
December 29, 2018
What do you do when you have an incurable illness along with a nasty bug inside you? You fight like hell!
I am Alison Largent, I used to be an Ironman 70.3 Finisher, marathoner, and all-around athlete along with working full time and going back to college and holding a 4.0 GPA at Texas A&M San Antonio. In other words, I loved and lived for the challenge, and once that challenge was completed I was looking for the next, I had a passion and drive that few can compare, along with a work ethic that comes along with those that compete in these fun yet crazy sports, then one day it all changed.
It all started when I was approx. 36 years old when upon waking and trying to get up I flat hit the floor. I thought I might have hopped up too soon but once downstairs I stooped over and instantly hit the floor with vertigo so bad I had to call for my husband and crawl to the couch and sit in one position all weekend to not get sick. The general practitioner said it would go away but it didn’t; and eventually I saw a specialist, Dr. Brian Perry, who specializes in Otology/Neurology, who said I did have water in the ears, and that I had suffered a major hit to my balance nerve and lost approximately 60% of my balance which would not be regained and was probably due to a virus or bacteria. He also stated I could not afford to suffer such attack again.
We changed my diet and called it Meniere’s disease and we had a fun year playing with different combinations of medicines to improve the migraines and try to counteract the vertigo, and although we did get improvement with the migraines and eventually the vertigo, however it came and went from time to time. During that period, I was hardly able to do my Escrow Officer job without dry heaving and walking like a drunken sailor as every movement made me sick. I even had to have either my dad or my hubby take me to and from work it was so bad.
I forced my training in a safe manner bike stationary stand and walking from tree to tree at first and attempting to swim in 3 feet of water, and learned what I could and could not do. By the time I went to physical therapy I had it down. The one thing that remains is that I cannot walk on anything too soft or padded or I completely lose my balance. I also must have a horizon line as my balance is strictly vision based; so large crowds and parties where there is a lot of movement I fall or just have a drop attack as I can’t remain standing. This has come and gone over the past 11 years.
With hard work and determination, I returned to great health and competed and worked hard and always had morning energy and couldn’t stand not to go for my morning runs anywhere from 3 to 10 miles this lasted till 2013 after the Ironman 70.3. And that was the beginning of the end.
After this accomplishment I went for an easy swim and noticed I could not breathe. I returned to my general practitioner who upon examination noticed I had a very bad respiratory infection that took a month of steroids and a month of steroid breathing treatments and I was benched for a long time to let my body recover but it never did.
I noticed more cracking, and stiffness and a general overall malaise that I just could not shake. I began to catch every bug and virus and flu that circulated and with that my immune system wasted away.
With my health in mind I switched jobs and tried to workout however my body wouldn’t take it. I went back to school, one class at a time at first and it was ok till the worst of my syptoms showed up and I began having concentration problems and severe pain from sitting for long periods of time or if I stood it would send pain straight up my legs to my spine. So I was sunk either way. Then my eyes started having issues and still do. I went from 20/20 vision in both eyes to double vision and having to wear prism glasses and have a flaring of the left optic nerve.
My short term memory became affected as I started having episodes of nystagmus (twitching of the eyes) and when it happened I couldn’t concentrate on anything but that. So I had to become reliant on recording my classes to make sure I had everything and at work I had to take as many notes as possible and live by that steno pad. I learned to cope and fake it till I made it, In fact I did it so well no one knew but my closest of friends I was sick and that wasn’t until one day when my leg or arm would spontaneously shoot out and it was witnessed by them.
When it started affecting my entire body, my walking and my complete cognitive function I knew we had a serious problem and I sought out doctors and it took a really bad day and a referral from my previous ear doctor to get me to the Neurologist that was able to finally diagnose me.
Now don’t think this was overnight, I have been through many doctors all with different diagnosis and everyone had their own theory. Yet she stuck it out and stood her ground and for that I will forever be thankful. She was the one that found the Stiff Person Syndrome (SPS) AND Lyme when so many others just missed it, or were to blind to see anything but what they were looking for and were not open to other options, and all the while this had shown up on multiple tests prior to these multiple second and third opinions.
To date I have been through numerous MRIs, Spinal taps, X-rays, blood draws and labs, EEGs, nerve conduction studies and more doctors than you can believe.
The problem is SPS is a one in a million disease with no cure is so rare no solid research has been gathered and they are just starting to make some risky breakthroughs with treatment, however the cost is $400,000.00. Yes, that is 400K and it is not guaranteed to work and not many insurance companies are willing to take the gamble. Secondly, each person is different and as such this disease is not consistent across the board.
Then, you have Lyme Disease, “The Great Imitator” as many of its symptoms are often misdiagnosed as MS, ALS, and Parkinson’s until treatment reveals little to no progress. According to the CDC, Texas doesn’t have the correct tick for Lyme Disease, however their information has not been updated in almost 10 years! That is like saying there are no alligators in Louisiana!
This is why it is so important to fight and to be your own advocate so you can get the best treatment options. My doctor’s mentor is on the current Congressional Committee updating the testing and treatment of Lyme Disease.However, it cannot come soon enough as their current stance is you must catch it early, you treat it with one month of antibiotics and if that does not cure it you must live with it as Chronic Lyme Disease or PTLDS (Post-Treatment Lyme Disease Syndrome).
So, that is my story I have Lyme and SPS both autoimmune diseases and have started collecting more. To date I have Epstein Barr, Hashimoto’s, Hypothyroidism, Hypotension, and several others, the list continues and I continue to get sicker and sicker so much so I receive shots that chemo patients get to boost my immune system so I don’t have to live in a bubble as any virus or bacteria could be very bad and even deadly for me. With this hit to my immune system and thanks to spasms and seizures that go along with SPS, I have been in and out of the ER or hospital 24 times in the past 26 months!
What you need to know is this, I can’t get out, I hurt almost 24/7 a day and I walk like Frankenstein even with a walker and that is assuming my legs decide to work that day. My vision has literally doubled (I see two images of everything) and in 7 months we have had more changes and again I am having to have my eyes rechecked to see if I need another set of lenses. I sleep more than I am awake and I can hardly read a paragraph on some days and have it sink in, whereas in my past work-life I used to crunch numbers with the absolute best of them and go over contracts and negotiate oil and gas leases. I had to be knowledgeable with many legal terms and their consequences; I was no simple secretary.
I see a therapist and I have accepted my circumstances quite well and can joke about it and I live the most out of life that I can, however it is difficult to get out without the outside world and stores being too much to take in. I was an Ironman I don’t know how to not push and give it my all, but with this you can’t or you pay; either with a seizure and an ER visit or you end up in bed for 3 days in severe pain or comatose. OH, and my poor husband that has to listen to me ask the same questions over and over, I actually feel like Dory from the movie Nemo.
We have had to move to buy the house behind my parents so that I could have assistance on a 24-hour basis. The house is great; however, it needs work to accommodate my wheelchair and walker so they will fit through doorways and we, (meaning my hubby and friends) have done some of our own “adjustments” so I could gain access to the kitchen with the big wheelchair YAY!!!! Now it really needs some help but I can get in!
I have had to go on Long Term Disability status and pray to God that my LTD insurance company makes good and approves my LTD Physical Disability Case instead of going for the shorter payout which could leave me homeless in 10 months unless my filing for disability somehow gets approved.
To sum it all up, this illness has cost me my job that I loved, the city I lived in and miss along with my friends there, my athletic lifestyle and my health, what is next, my life?
All I can say is please be vigilant with your health as I would never wish this on my worst enemy, not in a million years.
This is a non-profit we are working with so everything donated is a tax write-off, and they pay the bills much like a trust so there is no misuse of funds. If you are willing to help with my situation and help me keep my house, pay doctor bills and hold onto what life I have until they find a cure or slow this down I would greatly appreciate it! And If my purpose from this is to get the word out about these awful diseases so be it, I can live with that too because that is an important job and I have never backed away from a task with meaning.
Photo Galleries (1)
March 8, 2019
Praying for you and your family
December 29, 2018
Keep up the good fight, Alison! You have a whole lot of people praying for you and loving you! Hope this organization provides you with LOTS of assistance.
PAULA White PAULA White