Young Father of 5 disabled from Med

Thank you to everyone who donated when we needed it
Josh and I are constantly thankful for the love and support we received and the love we continue to receive when people find his story.

A medication reaction and several misdiagnosis, left my husband Mentally Disabled  and Physically Disabled with Permanent Movement Disorders. (Akathisia and Dystonia) in Jan 2014. He was denied 2 times for Disability and had to wait over 2.5years to see a judge.

Josh has ALWAYS been a hard worker, loving and fun, Father, Husband and friend.  He learned things very quickly, was a people person, team player and always has been promoted fast in all his jobs.  He has never once been fired.  When we were tight on our finances, several times over the years, he would have no problem getting a second job to provide for our growing family. We never had credit cards, loans, car payments, debt of any kind. We lived simple with our children.

However, at the end of 2013, due to several stressful situations, He gave in when his therapist offered him a low dose of an antidepressant.  
What happened next changed his life.
January 2014 He was then hospitalized from a side effect and they upped the dose.  2 days later uncontrollable movements started.  They played them off as anxiety and wanted to double the dose again which is when I got him out.  After that when we met with his prescribing doctor a week later,  they kept him on that dose for another couple weeks then she took him off it and put him on another 3 medications. Each and every time he went in, they said it was anxiety and the side effects weren’t that bad (some landed him the ER for heart attack symptoms!!)  He was in therapy 3x a week and they kept saying it was behavioral. He was diagnosed with Complex PTSD. 

10 months go by and 14 medications later, the movements/pain were getting worse. He hasn’t been able to work since January 2014, and Disability had now been denied 2x with the reasoning “Since he is young and compliant with Treatment, he is able to work”.  

In Oct. 2014 we finally got into see a Neurologist. Within 5 minutes that doctor did more than any other had done all these months. He showed sympathy and concern, instead of pushing more drugs, he confirmed my husband had Severe Akathisia and Dystonia.

Akathisia is a side effect from medication. If treated early, and taken off the offending medication, it can be reveresed. The longer it goes on, the more permenant it is and because they continued to switch meds, his is now Severe and irraversable we have been told by several specialists who say he is the worse they have ever seen.   It is literal Torture. It’s Hell. It’s constant. No relief.  It’s involuntary movements, hand wringing, pacing when you desperately want to stop, when your body won’t let you, but on top of that its extreme pain from the inside. It feels like your body is on fire and you need to jump out of your skin.  Dystonia is muscle contractions in one or more parts of the body causing muscle cramps, nerve damage and of course pain.

 He paces 16+ hours a day. Doesn’t matter if he is at the doctors, or at home. Doesn’t’ matter if he is inside or outside, its constant. He wants so badly to stop but can’t.  With the Disorder Specialist as well with Therapy, they tried distracting his focus on something else and he still cannot perform simple activities as his body moves still.  He doesn’t sleep until he is exhausted and just can’t move anymore.  
Josh agreed to post this video but was reluctant, because after watching it himself, he feels it doesn’t even begin to show what he feels on the inside.)

October  2014 we got the MRI done and even with his headaches getting worse, stuttering and memory loss,   it came back perfect and also got into the Movement Disorder Center where they ran more tests.  All results came back perfect (Thyroid, Autoimmune, Heavy Metal, B12, Iron, etc.). He does have the MTHFR gene mutation. 

He is embarrassed to be in public because he is always asked "What’s wrong with you?" "Are you cold?" "Do you need to pee?"  "Calm down, you don't need to be nervous" People don't understand that he can’t stop. We even had a Policeman ask if he needed an ambulance because he thought he had overdosed on drugs, thank goodness we had the medical proof to show he was not on drugs, but it was in fact caused by prescription drugs!

On a good week he is able to hold our baby once or twice for a few minutes before he needs to put him down.  He spends most of the time in the hall or kitchen pacing and keeps his distance. 

He wants so desperately to feel normal again and work and do something productive.  Instead he paces all day, can’t sit to read which he used to love to do, can’t sit to even watch a short TV show or movie, and can’t be around people in general.  His memory and speech have also been effected. Some days he stutters and some days he doesn't. They told us thats because the medications fried his neurotransmitters they are misfiring. 

We appreciate all of your love and support in this difficult time. And thank you in advance for your thoughts and prayers, and any contribution you are able to make.

*NEW VIDEO MARCH 2016

*NEW VIDEO AUG. 2017

*NEW VIDEO  JAN 2018


 

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Aimee Worsley Jensen 
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Casa Grande, AZ