Rare Autoimmune Disease Alters Life Overnight

Please help Paula, who has devoted herself to helping others.

She got up in the middle of the night to walk to the bathroom. Halfway there she sat down and has not taken another step since. In the span of minutes, Paula, went from walking, to being completely paralyzed from the chest down. For Paula and her husband, Vince, life was irrevocably altered in that instant. Rushed to the hospital and put through a battery of tests, the first diagnosis was spinal stroke. Days later the final one was NMO. A rare autoimmune disease, neuromyelitis optica affects roughly 7 in 100,000 people in the US, .007% of the population. With cases being so rare, neurologist who specialize and treat this particular autoimmune disease are sparce. A difficult situation made more so, when trying to get answers and dealing with a disease that doctors don't have a great grasp on. Leading up to this night, missed signs from various doctors, when sought after with an array of symptoms, resulted in the missed opportunity to treat this autoimmune disease before the flare up would reach this point of paralysis. On top of all that is the growing list of issues Paula is having to deal with, including but not limited to autonomic disreflexia, neurogenic bladder and bowel, and painful tonic spasms.

Before this event, Paula was a massage therapist and teacher at a massage therapy school. Finding her calling in helping other to feel better and to share her knowledge with those wanting to do the same. After all the assistance she has provided over the years in helping others to heal, Paula is now the one in need of assistance in her healing process. Her husband, Vince, is a small business owner. Taking on the responsibilities of running his business and being the sole caretaker for Paula as well. Early mornings to get Paula ready before work. Helping in all the ways you would imagine someone with a newly altered life of being paralyzed from the chest down needing. Coming home at night and trying to have some semblance of a normal life requires multiple transfers with use of a sling to maneuver Paula from bed to wheelchair or wheelchair to recliner and so on. It is an undertaking Vince has taken on so lovingly, but has also been taxing, physically and mentally, for him as well. You will not hear him mention it, but he is in need of a shoulder replacement, which has been put on hold indefinitely.

With this new experience being a continuous learning process, they are just trying to figure out and adjust to the initial obstacles. Funds raised will be used for renovations needed to make their home accessible to Paula. From being able to fit into the bathroom with the wheelchair to the ability to wheel herself outside to the back porch, one of her favorite places she can no longer access on her own. Their entire beloved home is older, and honestly needs work inside and out, to be accessible. Ramps and a concrete path to be able to get her out of the house without having to be wheeled over grass. Already mounting medical bills and the ones that are still to come, this journey is far from over. Funds are also needed for the purchase of medical equipment, an electric wheelchair is a highly suggested purchase by medical care professionals, which will help to give Paula back more of her independence. And for home care, someone to assist in all the tasks that Paula is not able to do and to give Vince a bit of breathing room. For all the things big, in home health care and specialists, and small, briefs and chucks pads add up so quickly, not covered by insurance. And if enough funds can be raised, a wheelchair accessible van that would enable Paula to get to all her various medical appointments without having to schedule with Lynx. While providing a great service to those in need, it is not a flexible option. Pickup times must be schedule at least a day ahead of time with an hour and a half window before the appointment time and a pre-scheduled pickup time from the doctor's office with no flexibility, and we all know doctors appointments run late with no knowledge of how long the wait or the appointment will take. Paula has already had the experience of putting in all the prep work, not a simple undertaking, to get to the doctor's office, using Lynx, with the result of having to leave unseen before her time buffered scheduled pickup. Any amount big or small is greatly appreciated to assist Paula and Vince, these two great salt of the earth people, ease some of the burdens and be able to afford some things that would make life better, in this new life they never expected.