Hi Zora, how are you? How is your sister feeling? Is there any progress?
Hi Sarit.
Wow, I’m useless with emails and I stumbled across this accidently.
My sisters progress is small. She is still having speech therapy, OT and physio. She still only has meaningful use if one arm and her speech can be better or worse depending on fatigue. She is finding life very difficult, sadly.
How is your husband Danny? Any progress his end and how are you coping with it all?
Zora
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@Zora thank you for keeping us updated on your sister’s story. I am sorry she is finding life difficult, but the fact that she has had some progress does make me happy. Wishing you all the very very best. Rooting for you!
Best,
Arjuna
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Hi Zoara, I’m sorry to hear about your sister.
I hope she gets better. My husband also unfortunately progresses very slowly, and most of the time is tired and helpless.
I’m fine … I do not have many choices.
Pray for your sister and for everyone who has this disease.
Wishing you health.
Sarit
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I was diagnosed with ADEM when I was 36. 5 1/2 months in the hospital and inpatient rehab. While at the hospital stage, I was given all the things you described. I was only in a comma for 48 hours.
I was paralyzed and unable to speak, sometimes unable to breathe or eat. My vision is still at issue and I am now 43. I also still have real issues balancing, but I can walk, type and eat! Things get better! Keep your chin up!!
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Ronnica,
You sound like you’ve come a long way. What is your daily life like? Are you working or still rehabbing? Did you have any difficulties with COVID? Can you share any info on some of what helped you with recover? You may be able to help others of us struggling.
Thanks, Lynn
I am an attorney licensed in Texas. I work some, but not like I use to. I got COVID and have not been vaccinated because my doctor advised against it. I recovered well. I work out every other day. I do 5 miles on a treadmill and work my core. I take vitamin D (it helps prevent depression that was a side effect of ADEM). I take magnesium because ADEM messed with my bathroom function and magnesium helps. I struggle with sleep, but always have. My doctor does not like it since ADEM because rest is necessary, so I take meds for that. I use to have to take antidepressants after ADEM, but I do not now. I will always have to “rehab” because maintaining muscle mass has become difficult after ADEM. It is a life changing event, but taking care of yourself is the most important part of recovery. Pushing yourself to your limit, but not further is key!
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You sound a lot like me. Trying to keep healthy is the most important thing. The magnesium helps my neuropathies, but my husband keeps me on LOTS of vitamins. I followed your path for COVID and did survive it. Ever since ADEM, sleep is terrible, but I’m beginning to think some of my symptoms might not be from ADEM, but from all the Cortisone I had. 3500 mg. In 4 days.
Lynn
Lynn,
The treatment of steroids would definitely effect sleep. Are you off them now? How often do you take them? My doctor specializes in brain disorders, sleep, muscles and nerves. He has had a great deal of success helping people heal by helping people sleep, not only with neuropathy but with memory and focus. I do take medication to help me sleep (not my favorite), but when I tried to stop taking the meds my focus and muscles mass deteriorate. I get an MRI every two years, just to check. It has been stable. So, the memory, focus and muscles seem directly related to sleep.
Hi @Ronnica , what you’ve noticed with sleep and muscle mass seems interesting, and I am glad that it’s helped you recover. Are there certain side effects with your medication?
Take care,
Arjuna (Lead Intern)
I don’t have issues. In fact, my dose has not gone up since this whole thing started in 2016. People have issues with the medication, hence it being scheduled, and I have an addictive personality, but for me there has been no problem. I argue that it causes weight gain and weight retention, but that could also be my thyroid problem.
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I was on the corticosteroids when I got sick in 2013. Now at 63 I have to have cataract surgery, because I was told that quantity of cortisone causes aging. Lovely,
Ditto on the cataract surgery, but I was 65 when I had both eyes done, and it could have been as much age-related as ADEM related. I also have some wet macular degeneration on the side. I basically see fine now. My ADEM onset was in 2018, and the effects have been scattered (eyes, muscle mass, memory, etc) but I’ll turn 70 this year. It has been rough accepting my “new normal” because my old normal was very cool, but I’m alive to tell the tale. HOW IS EVERYONE DOING? DO YOU HAVE UPDATES ON ALL OF THESE EVENTS? SPOUSES, SISTERS, COUSINS, KIDS? Please let us know. XO
Do you think your ADEM and thyroid problem is related? Hashimoto encefalopathy?