Today I received an email from a friend who also has a family member receiving care from Johns Hopkins. She wanted to know what my thoughts were on the hospital, and seeing I was about to do a post on my experience at Hopkins, I thought I would just share with you an excerpt from my email.
“My dad has a very rare disease called Spinal Cerebral Ataxia 5, which is technically degeneration of the cerebellum. Although it is not fatal (most people die from the brutal beating they take from the falls) it has turned his world upside down. His speech is severely slurred, motor skills diminished, and his balance non-existent. The effects of the disease mimic a person who is severely impaired by alcohol. He has finally come to terms with using a walker, and living his life labeled as handicapped.
I cannot even begin to tell you how highly I think of Hopkins. Since my dad started to get sick about three years ago, I have been with him to many neurology appointments. Most of them I have been completely and utterly disappointed with. I can’t tell you how many times I’ve come home from his appointments (at UMD) and cried my eyes out, for their lack of interest, compassion and sensitivity for my dad’s illness. I understand it’s rare. I understand there isn’t that much research. I understand there is no treatment, but that doesn’t dismiss the fact that he is a person, with a illness that has completely altered his life.
He was at Hopkins yesterday for a spinal tap, to try and get some more information on my dad’s current progression of the illness and hopefully to spark research of the disease in general. The moment we walked in yesterday, I was taken aback. They were amazing…they wanted to know what my dad did for fun, if he had a boat, they wanted to know my name, what I did, etc, etc. And it wasn’t just one person who was genuinely concerned, it was everyone we came across. It is what I had been wishing for my dad since this whole thing started, someone who cared, and realized what this illness is doing to my dad. From the receptionist lady who called our number in about 1.5 minutes, to the nurse who took his blood…amazing. The facility is beautiful, the people are so kind, and you know your loved ones are getting top-notch care.”
Although I am not a big fan of hospitals, Johns Hopkins is one of a kind. They have set the bar high. I hope none of you ever have to experience a day in a hospital, but if you do, know that Hopkins is internationally ranked and has the best of the best, top-notch care that you can get.
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