Thank You Chive Charities!
I am excited to share with you that the great charity, Chive Charities, has purchased me an Action Trackchair to be able to function outside more easily and spend more time with my family. One of the groups they support are those with rare diseases, and I qualify because I have the rare disease Mollaret’s meningitis (aka recurrent aseptic meningitis). This disease causes me to have viral meningitis recurrently and is a horrible thing to live with. I believe it has also caused and/or contributed to me getting other conditions like functional neurological symptom disorder (FND), seizures, syncope, myalgic encephalomylitis/chronic fatigue syndrome (ME/CFS), posttraumatic stress disorder (PTSD), depression, anxiety, etc.
I believe this rare disease, that is not well researched, causes me to have accompanying neurological issues from repeatedly having inflammation of the meninges (meningitis). I have had several hospital visits/stays due to this disease, and deal with low grade symptoms on a daily basis. I am also allergic to the only treatment that is believed to work, so I can only take the vitamins and supplements to try and control it. Some of the more severe symptoms that I experience because of this disease and/or accompanying conditions are:
- Temporary paralysis
- Sleep paralysis
- Seizures (non-epileptic)
- Post exertional malaise (a worsening of symptoms as a result of physical or mental exertion)
- Syncope (fainting)
- Traumatic brain injury | concussion (numerous since age one and continuing due to syncope)
- Heat/Cold intolerance
- Exercise intolerance (exercise causes seizures, paralysis, and syncope)
- Orthostatic intolerance (development of symptoms when standing upright which are relieved when reclining)
- Light sensitivity
- Memory loss
- Losing thoughts mid sentence
- Difficulty with word finding
These symptoms make it very unsafe for me to leave the house without some kind of assistance. I currently have the KD Smart Chair that allows me to go around the block with my family for walks (in good weather), go to doctor’s appointments, and go to my daughter’s school for events. This is helpful, but still limits what I can do outside of the house. I tried to take this chair to the fair last year and almost tipped over trying to get over cables that were lying on the ground, which is unsafe.
This Action Trackchair is an all-terrain wheelchair. It will allow me to go on hikes with my family, spend time at the beach, go out with them when they go snow shoeing during the winter, and attend outdoor sporting events for my kids as they grow up. And a really cool thing is that this chair also comes with a snow blade so I can do the snow clearing of our driveway and sidewalk during the winter to take a little more off my wife’s plate.
Chive Charities, and its donors, are giving me the independence I so desperately desire so I can feel like a part of my family, and that I am actually living life instead of just existing. Thank you Chive Charities for helping me live a better life!
If you can help us fund a trailer to transport this new chair to these new fun adventures, please donate to our fundraiser here.
Life’s Hard; Be Kind