Hello there,

I am a 57-year old mother of 3 in Arkansas, though a native Ohioan. I have been on the neurological merry-go-round for what seems forever.

My 22 year old daughter was diagnosed with anoxic encephalopathy at birth, after we took her in to a neurologist for her decreasing memory and coordination. Her cerebellum did not form correctly, leading to balance and gait issues that she had had for years but we had no idea. He has monitored her for a little over a year. Then last week we had a teleconference with the same doctor and related several symptoms such as tics, weakness, even random stabbing pains, all of it, and he strongly suspects that a part of her brain called the medulla oblongata did not form correctly and thus her CO2 and O2 levels get way out of balance. When this happens, it causes a myriad of symptoms. While not fatal in itself, this means disability and it is incurable and untreatable. So we (and our daughter Holly) have had another blow.

My 19 year old son was born with Downs', and for the last 10 years has lived in full time care facilities. He is not functional enough to live at home or in a less structured setting. In June, he had to be fitted with a feeding tube as he was unable to absorb nutrients without getting food in his lungs, causing pneumonia. He is doing well but still has a lot of issues such as seizures and a heart murmur. The hard part is being isolated from him due to Covid.

Oh and last but not least, my husband was diagnosed also in June with early-onset Alzheimer's! Just like that, he's on permanent disability, though through his workplace, until he reaches retirement age.

All of these events have taken a toll on us as a family and on me as the most "normal" of the bunch. Oh, and I have MS but of the relapsing kind, and fortunately, it has not relapsed seriously in years. I have more "drop foot" and fumble fingers and believe this is exacerbated by stress. "Stress" would be the byword for this year.

I'm glad to find this place and all of you.

Ann