Encephalopathy

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#Weird skin rashes and spots;

I have been "around the block" with a variety of stuff all my life. I am 75 with hEDS, POTS, dysautonomia, MCAS, CFS/myalgic encephalopathy/ SEID, and small fiber neuropathy.

As I age , the management and science has expanded. I feel lucky that there is so much more info. However, this non itchy, nonpainful, bright red flat pinpoint rash stumps me. It is on my lower aarms and lower legs. Is it an auto immune thing or what?

SuzieKihei

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My Wife has "Alzheimer's Like" Dementia caused by Strokes

My Beautiful Wifeycritter, Cheri, has suffered a combination of Strokes. It began when I woke the morning of January 2nd, finding her on the Floor between the Bed and her Closet. We got her to the Hospital, against her wishes, because it was obvious she was no longer Herself!

The 1st Hospital would not listen to us about her Blood Gas and COPD Exacerbation that caused her to be place in a Chemically induced Coma, Twice before in a Local Hospital nearly a decade ago. We had to FIGHT them to even get the CT Scan and MRI done - Then once the MRI results came back they could no longer deny she had a STROKE - Not just ONE, but three and the most recent had hit her Right Parietal Lobe near the Prefrontal Cortex, and she lost her Cognitive Abilities and can no longer recall Passwords, phone numbers, addresses, etc.

Cheri is a former Regional Franchise Training Manager for Skipper's and Winner of numerous Awards for Excellence in her career, Former Owner of Ice Cream Store, Floral Shop, Etc. One of the most Intelligent women I have been with, and was a huge help to me, as I battle ADHD, Autism Spectrum, Borderline Personality, Dyslexia, and she helped me overcome my last bout of Suicidal Depression. She taught me how to use Audible and Podcasts to help me LEARN and navigate some major Learning Difficulties. And, in less than 6 months time, she has been reduced to a Childlike State of Mind. Her mentality ranges from about 6 or 7 yr old to young adult... (Earlier today she said she felt about 18).

All of this was compounded by the fact that we were living in substandard housing which had become overrun with Rats, and no help from the Management. Our home was in need of being condemned and was far below any Health Codes.. Our Daughter, Ashley moved us out of the Trailer while Wifey was in the first Hospital. We now have a very cute apartment in a very secure 55 and Older Bldg.

Cheri was moved to a Rehab Facility that only made her Delirium more pronounced. She declined Mentally while she was in care at that Facility and moved to another Hospital... They ran numerous tests on her that all came back INCONCLUSIVE, and she was finally released to come home, and we tried to establish care for her.

On 15 March, she was taken to Good Samaritan Hospital, where she has been since and had an extensive battery of tests HERE IS WHAT WE KNOW - She has Acute Metabolic Encephalopathy - Damage to her Right Parietal Lobe, near the Prefrontal Cortex resulting in Alzheimer's Like dementia... We STILL do not have the COPES Assessment done, to get her set up with IN HOME care... They wanted to Discharge her tonight, and we FOUGHT IT - Because NO ONE has trained us on how to Navigate her Dementia, or how to Redirect her when she is in some Delusional Reality and petting her purse and talking to it like a cat, or seeing and talking to people her daughter and I cannot see or hear...

I am reaching out for someone, anyone who can offer insight and help, because I am losing my Life Mate, a piece at a time... Every time she has a set back, a little LESS of her comes Home to me. I have times when I sit in the car, for an hour or more waiting for the TEARS to pass, after kissing her Goodnight at the Hospital...

If she has deteriorated this much in less than 4 months, will I even have another six months before she REQUIRES Assisted Living, (In which case, I will become Homeless, because I cannot make the RENT here ALONE), or worse case, she becomes incapacitated to Stroke, or Crippling Dementia??

I am looking for a Face to face Support Group, Locally, and I am going to request Weekly Counseling for MYSELF to be have Guidance and Direction and something or someone to Help ME...

(edited)
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Shattered Dreams

To those who have been following my story, Thank You. Here is the most recent update on my Wifeycritter, Cheri'.

Acute Metabolic Encephalopathy caused by Strokes to the Right Parietal Lobe near the Prefrontal Cortex. This is resulting in Left Side impairments of mobility, and while she can still speak, her speech is becoming slow and slurred... She is still in there and is aware that she is progressing and in lucid moments expresses sadness and fear. Not of dying, but she keeps apologizing for leaving me, and knowing that she is carrying any personal pain for me and others, on top of the physical suffering... It is shredding my soul to watch this... This is NOT a recoverable illness and she will have more strokes, and progression of damages...

When she has to go into Assisted Living, or Passes, I will have to abandon our beautiful new apartment we have not even been in for 3 months, yet. I only collect $1047 a Month, Disability from SSI. The Rent here is $1200 and doesnt include Utilities... and when I do leave, I will be sued for the remaining months we are contracted for... I can't avoid that...

I have plans in place. Our Daughter will be taking me, and what few possessions I do have to my Sister's in Coeur D' Alene, Idaho, where I will be rebuilding myself yet again, at damn near 60 years old...

I did not know a Soul could be so Shattered, but here I am - my New Antidepressant is giving me headaches, and now I dont know how much longer I have before my world inverts yet again, leaving me to figure out which way is Up again... I have never been so scared... Knowing it is coming and being prepared is GOOD but it doesnt do anything to relieve my anxiety and stress... So I am focused on practicing my breathing and my CBT 3x3 exercises and praying I stay focused and do the Right things...

If I disappear for a while - just know I will return when I am able to be online again, at my Sisters home in Idaho...

Peace, Love and Good Mental Health

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I’m new here!

Hi, my name is AslanMama. I'm here because my 8 month old is suffering with 100-200 seizures a day and cerebral palsy and epileptic encephalopathy. My oldest boy has high functioning Autism and the middle might too but he’s possibly just delayed from living in a crazy situation. Aslan rides the line of life and death most of the time. It’s a crazy making ride. looking for support!

#MightyTogether

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I'm new here!

Hi, my name is MarineMom31103. I've been diagnosed with End Stage 4 (End Stage) Cirrhosis of the Liver, Hepatic Encephalopathy, Bleeding Varices, Chronic Pain, Insomnia, PTSD, I also move around when I think I am asleep. 38 years old in Pensacola, FL.

#MightyTogether #Anxiety #Depression #PTSD #Grief #FattyLiverDisease

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Sketching With a Piece of Charcoal in Non-Dominant Hand While Your Tremor is Making Your Whole Body Shake and Also With Double Vision is Hard

When it comes to painting I usually just hold the paint brush with my teeth to avoid having to deal with the constant shaking. But I'm trying to practice using my non-dominant hand more often...I also didn't fancy holding charcoal in my mouth...I really like the look of old renaissance portrait sketches and I wanted to kind of combine that style with an art nouveau portrait poster style. Not my best work but it's something a little different.
#Art #ArtTherapy #ICantDrawButDontCare #EssentialTremor #Encephalopathy #sketch

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Mixed Media Art I Made With My Paintbrush Held Between My Teeth

There was a time when I first became disabled that I thought I would never be able to do any type of art ever again #Art #ArtTherapy #ICantDrawButDontCare #Encephalopathy #ChronicTraumaticEncephalopathy #Insomnia

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