- 11 years ago
- Wedding: April 2010
I feel really lame writing this post but am hoping I can get some good energy and feel better from you fellow bees. I just joined this site and really like it. I was wondering if anyone is going through this or has……….
My fiance and I have been engaged for a long time. We were living out of state when we got engaged and decided to get married when we moved back home, it just took a long time…had to sell a house…lots of bad breaks
Anyways, right before Thanksgiving I found out that my stepdad is really sick. The doctors didn’t know what was wrong. Tests after tests and they said he had a muscle atrophy (sp) disease like ALS/Lou Gehrig’s. We decided after hearing that news to plan the wedding and have the ball start rolling fast. If he had ALS, he could only live for 3 more years.
It is has been so stressful on me … I am really close with my mom and stepdad. he has declined very quickly and is only 56, just filed for Disability and he can’t work. He was an electrician for years. He can’t hold anything in his hands. He has muscle spasms, his right hand and wrist are curling in. he has lost a ton of muscle and weight. He can’t walk without a cane. He and my mom never answer the phone any more and I live 1 hour away. My mom sent me an email last night instead of calling me (well, she sent a mass “update” email) and I feel really bad because I can’t even talk to them on the phone. I was just there this weekend getting a wedding guest list.
I feel like an absolutely horrible bride-to-be and am not expecting them to pay for anything. They are not working. This is supposed to be such a happy time, and planning with them, and they are so depressed and I just don’t even want to plan this wedding anymore. This was my mom’s email:
We had a Neuro appt today and will be going to Froederdt. Bill’s symptoms have worsened-his Rt hand curls up,walking alot worse than ever and has “emotional lability”, meaning this is affecting his psychology too. He now has agorophobia along w/ sundowner’s when in the dark, inside or out. The breathing problems and gagging together w/ all the rest are deeper than our Neuro can diagnose, so he’s sending us to his buddies at the Medical College of WI. There are 3 docs and each specialize in a different facet of these motor neuron diseases. The symptoms aren’t classic ALS or anything else, they’re a mixture of all 5 or so diseases, so he wants his guys to sort it all out. Tomorrow we start P.T., to loosen the spastic tendons and ease the pain of spasms. Hopefully they’ll show us some ways he can work ww/ these symptoms better. His has gone downhill too fast to be any classic sign of a specific disease. I am going to go to the Dept of Aging and Disability and see what they have to offer. We need help w/ certain things. So that’s the latest. I’ll fill you in as time goes on.
How do I stay sane and happy and plan this when this terrible stuff is happening? I can’t imagine my wedding in July without him there.
I’m sorry if I have offended anyone, I just thought this is the emotional board and I’m super emotional so it would be great for some support.
Thanks for reading. -S