Hello. My name is Karen, and I have Multiple Sclerosis. My husband Rick has Early Onset Alzheimer's. We are both 58 years old. This is the hardest thing I have ever done - I have never asked anyone for help in my entire life, but I desperately need help.
I've been told by two different neurologists that all neurological signs and my symptoms indicate MS. However, in order for me to qualify in the future for any assistance from public or nonprofit organizations, first I have to pay out of pocket for two MRIs, blood work, evoked potential tests, a spinal tap, and multiple doctor's appointments. We do not have any money nor insurance - and therefore I am not being treated thus far, nor do I currently have a "legal"diagnosis required for such assistance.
Since I was a teen, I have experienced intermittent neurological problems. In the past year and a half, they have been a constant and have become very severe, prompting me to seek a neurologist. My life has become a nightmare. I fall all the time and have repeated injuries to my body, I can't hold on to anything, so I have been scalded over and over. I cannot even cook a meal for my husband or myself. He forgets to eat, which adds to the problems. On the days I am able to walk at all, I appear to be drunk because I stagger and cannot keep my balance. I am always dizzy, numb from the waste down, have tremors, contortions/spasticity, both bowel and bladder incontinence, extreme MS fatigue, and a host of other symptoms. Over the past year and a half, I have gone from being completely independent to being dependent on first a walker and now a wheelchair. I am in pain all the time, with no relief in sight. It has greatly affected my cognitive abilities also, so neither I nor my husband have been able to function properly for a long time now.
My husband was diagnosed with Early Onset Alzheimer's Disease (rare familial version/genetic form) back in 2006 at the age of 52. One brother has already passed, and his sister is in the end stages of Alzheimer's now. She is 62. My husband has progressively gotten worse over the years, and has now been in a very more severe stage for the last year. He is currently in jeapordy of losing his job and our meager income, as he is messing up at work due to his memory/cognitive problems. He has not been back to his neurologist, either, due to lack of money - and we cannot afford the Aricept that could have helped him over the last 6 years and could help him now. The Alzheimer's is now drastically changing his personality, and he is no longer the man I knew. He is not able to communicate/have conversations with, doesn't understand/comprehend most things, etc. He has lost his judgment and reasoning abilities, right from wrong, cannot feel remorse/guilt, angry/frustrated all the time, hostile, etc. I worry constantly because he wanders off (sundowning) and I can no longer go after him due to my physical limitations/disabilities. He cannot help me at all with my MS or anything else, and it is getting harder and harder for me to help him.
My MS decline and his Alzheimer's decline happened almost simultaneously, and this has been the worst year of my life. I am under unbelievably huge amounts of stress, and need help myself, and it is overwhelming to do my best to help him as his mind slips away. Stess is the number one enemy to my MS - it exacerbates all my symptoms, and all my life is these days is worry, stress, and fear - financial, hubby's Alzheimer's, etc. I am isolated and alone and feel hopeless, as we have no local means of support from family or friends. We are alone. It's just the two of us.
I need desperately to try to get things done (to help myself and him), and to do that I need to be mobile. I cannot even leave my house because I cannot get my wheelchair out the front door and down the steps, nor can it be lifted into the back of the trunk of the car. I need a wheelchair ramp for my steps, and I need a carrier on the back of the car that will hold the chair. Even inside the house, I am limited as the bedroom and bathroom doors are not wide enough to get through. They need to be widened. Everything takes money that we simply do not have. I have literally been inside these four walls for about 2 years now, only leaving a very few times. Our car is very old, and breaks down constantly. He has had to walk 5 miles to work and 5 miles back on several occasions due to no money to fix the car. The roof is leaking, the rent is overdue, I need teeth pulled and dentures ( I have to puree all my food due to MS and dental situation) and I am at the end of my rope.
Again, this is the hardest thing I have ever done. I completely understand that we live in an unsteady economic time. Please know that any donations whatsoever would be deeply appreciated from the bottom of my heart, so I can help my husband and myself get the medical help we both desperately need, the medications we need, the treatments and the help we both need.
If you choose to help us, THANK YOU from the bottom of my heart. May you have peace and love and light all of your days, and may your kindness be returned to you 100 times over.
- Gnosis Mysterion
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more