Hi, I'm Spud and my mom has been given diagnosis of MND, I think.

This is my first time on a forum, ever. Please forgive my ignorance and let me know if I do something wrong.

Now, let me explain. Houston is where I hang my hat. My parents are 6 hours away. I have deduced on my own that my mother's symptoms started 3 years ago when she fell in parking lot at work. She said she tripped on pavement. About 3 months later my daughter went to spend spring break with them and my mother could hardly walk and balance was very off. My mother decided it was her ankle and arthritis giving her trouble. Summer came and my daughters went to visit and mom's symptoms didn't get better and I actually thought they were worse. I finally talked her into doing a physical. She used her gynecologist. Blood work was good but bone density showed severe bone loss and osteoarthritis. I convinced her to start Calcium and Vitamin D and to try arthritis medication. By fall, mom was really having trouble with walking with pain in ankles and self diagnosed herself with plantar fasciitis. She also decided vitamin was causing her problem. She self treated through internet. After several months, my dad and I convinced her to see a Family Practice doctor for ankle. He said arthritis and sent her to PT. Fall 2018, I noticed mom's speech had changed and things were worse. She fell doing home PT and fractured her ankle. I convinced her to do MRI of brain. It showed demyelination of nerves. We also did MRI neck/spine. Osteoarthritis. So she convinced herself it was Rheumatoid Arthritis even though FP doctor said her labs didn't show it. We got to Neurologist but nothing was resolved or maybe she didn't tell me everything. She then convinced FP doctor to send her to Rheumatologist. Rheum said it wasn't RA and that Neuro had put in chart possible Parkinson's. She was sent back to Neuro. Long story short we finally got to EMG and Nerve Conduction test 2 weeks ago. He told mom in room that she has rare motor neurone disease or MND; definitely not Parkinson's. Neuro told her he was sending her blood work all over country. He is testing for things like HIV, Lymes Disese, all autoimmune etc. My father did not understand and my mom has already googled all kinds of things. She is convincing herself that it is Lyme Disease. (She was bitten by something last fall). We are in wait mode now. But Neuro did tell her to be careful with swallowing.

I am a Family Practice nurse but know nothing about this disease. I have however scoured the internet and it has given me no hope. Here is where I am. I feel it is MND upper and lower based on my research and her symptom progression. It has turned my world upside down. I cry everyday. I don't know what to say to my children or how much to tell them. My husband and friends have no words. I'm just lost. I talk to my mom everyday and can hear the strain in her voice and worry that I'm causing more fatigue but yet afraid I'm going to call one day and she can't speak to me. I don't know what to say to my dad who doesn't realize what he may be facing. And, I feel so much guilt because it isn't me with the possible diagnosis. I worry about my mom's dignity. She is a very proud private lady. They live in a small town and I know she is worried people will find out and talk. I don't know how to help them and know that this will be a great financial hardship. I can't leave my job because I have a family too. I know mom is holding out hope and I'm trying to keep it too. But, I feel we have lost valuable time these last 3 years and time is short. I'm also angry. My parents have worked hard all their lives with a minimal education just to get to retirement and my mom may not be able to enjoy it. She may not be able to do the 2 things she loves, quilting and gardening. They are devout Christians and I question why God has let this happen or even if their is a God. My mom told me on the phone the other night with a laugh to find someone quick for my dad because he can't be by himself. I laughed but didn't know what to say except "I don't think we are there yet".

Thank you so much for listening to me pouring out my heart. I just don't have a clue where to go from here and patience isn't my virtue.

Spud