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Lauraco

New member
Joined
Dec 18, 2017
Messages
2
Reason
Loved one DX
Diagnosis
12/2017
Country
US
State
California
City
San Leandro
I'll just jump right in...
4 years ago my great aunt was diagnosed with ALS. She passed 2 years ago at the age of 76.
Last year my mom (50 years old now) had a TIA stroke which was followed by a lot of problems the doctors couldn't figure out, including she can't lift her arms up to her shoulder height, she can't stand for long, she forgets things easily, she's always depressed. They ruled that she had neuropathy which was limited her range of motion and the depression and forgetfulness was due to damaged cells from the stroke. She's been attended physical therapy and getting steroid infusions but hasn't been improving. Her doctor referred her to a specialist who has now diagnosed her with ALS. We aren't sure any specifics of the type or progression before I'm asked and can't answer.
Two months ago, my uncle (moms brother) nearly died from kidney failure associated with his really progressed lymphoma. Hes now on his 4th round of chemo.
Three months ago, my grandpa (dad's dad) was also diagnosed with cancer, but his is much more treatable than my uncle's.

Overall, I've had a really bad year and I'm feeling really hopeless and don't know who to talk to. I deal with my own medical problems (severe depression since I was 9, migraines since middle school and various immune function problems). I have an amazing best friend and partner, but I feel like I'm burdening them with my life problems.

Sorry for the length and general whininess of this post
 
You’ve had a lot of losses recently. That’s so hard to bear. This forum is a safe place for you to share, and I hope you’ll feel welcome here. I’m sorry it’s been such a rough time for you.
 
Yes, a bad year. Horrible year. This forum is a good place for ALS families to share, get advice, find real help, and just rant.
 
Hi L,

First, I'm so very sorry for all you've gone through and all you are going through. I share some of your issues. I had a major depressive episode "out of nowhere" when I was 44. It nearly cost me my job because it was treatment resistant and I had to be hospitalized for nearly three weeks. I also have Hashimoto's (autoimmune). I developed migraines in my 30s but they're gone now (menopause took care of them.) Aside from that I was very athletic and extremely healthy. I haven't had a cold since 2001. The ALS was a complete shock and I'm dealing the best I can.

The thing that helped my depression the most was lots and lots of exercise and a good 8-9 hours sleep each night. I ate healthy meals and "tried" to stop being a workaholic. The last one I failed miserably.

Did they do genetic testing on your mom?

Please feel free to ask any question, vent, or share your concerns and thoughts. We're here for you. We have an excellent team of moderators who are so very supportive and caring.

Please know that no question is too small or too big for us to take on together.
 
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Thanks Kim. This is very helpful to hear. As far as I'm aware, they haven't done any genetic testing. My family does this thing where they hide stuff until it gets really bad. My mom didn't even call me when she had a stroke. I found out through a text from her husband.
 
Hi, I'm very sorry for all your losses this year. I cant even imagine how hard it is. I just lost my mom to ALS and only that has been so terrible. Your moms case sounds like my moms, she had FTD and ALS. She was misdiagnosed as Alzhmeimers first. She was also depressed, couldnt raise her hands ecc. but never complained much so we didtn understand what was going on untile she started to lose all her muscle powers even though she kept walking with the walker. I guess she didnt understand all what was happening because of the FTD. I hope you can enjoy this Christmas with your mom and I send you a lot of strenght to the difficult situation!
 
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