Young Father of 5 disabled from Med
Whether you can donate $1 or more, or even just by sharing Joshs story, we would greatly appreciate it.
A medication reaction and several misdiagnosisis, 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.)
*NEW VIDEO MARCH 2016
*NEW VIDEO AUG. 2017
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.
Josh asked me to set up this fundraiser and we are asking for donations. The bare Minimum to help us with the following
*To help Josh recieve the amount of Cannabis he needs to have relief.
*To pay what medical bills we have, as well as make sure there is money for Doctors, Tests and more Natural alternatives that our insurance doesn’t cover.
*Most Importantly it will help make all our monthly bills while he continues to get the help he needs, without him having the stress on him that he is no longer able to provide for our family.
****If you would like to donate another way please contact us****
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.
You can follow him and watch his video he did explaining it on facebook @ illuminatedEssenceLightPainting
or see his work for purchase on his new website illuminated-essence(dot)com
Josh wanted to go as a visual of the main symptoms he has and others have, to honor everyone suffering from pharma medicines taken as prescribed.
From the benzo community to OTC meds, antibiotics, SSRIs, antidepressant and other drug classes, are causing these horrible side effects all around the world.
From starting a med like Josh did, hitting tolerance, med changes, dose changes, to being tapered to quickly by their doctor and being thrown into withdrawal, these symptoms are very real.
You will see Josh has a zipper on his arm, representing Akathisia and the feeling of wanting to zip out of skin.
You will see the makeup bruises we did to show where Josh has had real bruises from injury. There have been multiple times where the body is contorting so much and he is stuck on the ground with his head hitting the tile until the Dystonic storm stops. The picture showing him rip off his shirt in pain because that's the only safe thing he could do, really happened not only to Josh several times that I have witnessed, but others in our support groups have done the same when they are in a horrible amount of pain.
Feeling electricity/bugs under under their skin, terror, horrible rage and hulk like strength, disassociation, life in black and white, bruises from injury, feeling like the brain is on fire, brain zaps, and being tortured in their own body from the chemicals, are just a few of symptoms that Josh wanted to show visually to make a point that this happens to so many people even though they aren't visual to anyone else.
Notice Josh, All the torturous symptoms are gone. Cannabis "zips" Josh back up. It comforts him. It gives him hope. It gives his life color again!
Here are some of the links :)
Thank you so much for sharing your story! You are correct in wondering just how rare this reaction if akathisiia is to antidepressants because in the 25 years I have specialized in reactions to these drugs I have seen it FAR TOO OFTEN and it is horrible! But we have learned there are natural things that can help. Please contact me here on Facebook or through our website at the International Coition for Drugawareness www.drugawareness.org and I will share with you what we have learned. I also have worked with the leading attorneys nationwide in filing both wrongful death and damage suits and I will be more than hsppy to introduce you to them. No doubt you clearly have cause to file!
If justice were done, the drug manufacturer would pay for all that this man has lost. They should take a small percentage out of the billions in profits they make from the drugs and compensate him for his suffering. And when people are forced onto disability from the brain damage caused by these drugs, the pharmaceutical company should reimburse the Social Security Administration, which we all pay our taxes into.
How can there be justice in this country if we aren't able to sue when we are harmed? When it happened to me, no lawyers would accept my case. Big Pharma is too big to fight and most lawyers are afraid to try unless they have a huge class action lawsuit. This is not the way our legal system should be set up... to protect the wealthy??? Justice isn't blind, justice sees green in the US.
I am so sorry this happened to you. I am iatrogenic illness survivor and among many other drug-induced illnesses, I also have permanent akathisia and dystonia brought on by medications, so I totally understand what Josh is dealing with! Mine have never gone away. I was prescribed the medications off-label and we were never warned by the doctor about the dangerous side effects, So many doctors are either ignorant about these symptoms or turn a blind eye. My family and I are now raising awareness about the dangers of psych meds. We have contacted the FDA, the CDC and many other agencies, but they have been zero help. Good luck... I hope you can get some justice. Please know you're not alone!
So grateful to be a part of Josh's journey. His response to the CORRECT form of medicine was astounding. Please help fund his efforts as he now begins to re-build his life and be the kind of Dad and Husband he wants to be.
I sent your story to a nutrition guru who is famous in our part of the US and is sought after world-wide (many are cured completely of terrible issues even autism, by following her recommendations) I asked what she thought could be done. This is her answer. May you find the answers and be able to live a normal life with your family.: Oh, what a difficult thing to have happen to this man. My heart goes out to him. I had to think about this for a bit, but I may have an idea to pursue, if the family hasn’t explored in this direction already. There is a woman named Julia Ross who is a nutritionist and an author of several books on the inpact of various amino acids on our brain chemistry. I first ran into her work when I began doing some research into the function of various amino acids, and at every turn I found people referring to her books with the greatest respect and appreciation. I ordered them and, sure enough, she has done some remarkale work. She has a clinic in California that addresses people who have addictions to drugs or depression. She has helped thousands of people withdraw from the drugs fairly painlessly while supporting their neurotransitter function. Similarly, she uses specific amino acids to overcome depression. She contends that we were supposed to have balanced brain chemistry through diet and that we are falling short for a variety of reasons. The understanding of the biochemistry of the brain has been central to her success. One of her books, “The Mood Cure” talks about how to achieve normal neurochemical balance again.You can check it out on Amazon. So, several things struck me as I read the story of the man who is struggling so terribly. First is that his symptoms were triggered by exposure to an antidepressant and subsequent withdrawal. First, that implies he may have had an amino acid deficiency to begin with. And second, that by withdrawing from the drug, there may have been an even more severe imbalance provoked at that time that has never yet been rectified. Julia understands the biochemistry involved with withdrawal. If you were to go to Julia’s website listed below, you will see a short video interview where she talks about balancing brain chemistry and there is even a section where she discusses withdrawal symptoms from anti-depressants, which occurs in some people and her opinion that this relates to amino acid deficiency. This man’s symptoms are severe enough that I think he could use the help of someone who has a great deal of expertise in this area. I wonder whether Julia could be contacted for help with this situation if the family were interested? If she was not available to help maybe she would know someone she could refer them to? At the minimum they could check out the book and the website and see what they think. I really liked the idea, though, of them receiving support from someone who has been doing work along these lines for so long. I would love to see them contact Julia. Because western medicine has divorced itself so thoroughly from the world of nutrition, I would not be surprised if there was little more that the physicians ca do in this case; their tool chest is generally along the lines of further pharmaceuticals. However, if they would be willing to explore along nutritional lines there may be some answers there. http://www.moodcure.com
Hi im so sorry you are going through this im going throgh so very similar things if you could message me i would like to talk more i have akathisia very bad but it seems to calm down late at night i dont know what med is causing it because im on three gabapentin ativan and methadone and they can all cause it and cause it in withdrawal my akathisia is physically only pacing and marching but the inner terror and torment is beyond belief im trying to get off of all the medications but when i try to taper it mskes them worse and its so severe i feel like my mind is turning inside out. I thought that dystonia is different than tardive diskenisia im not a doctor you have been through so much it is my understanding ive tried to come off benzodiazepines for two years and am still suffering severe withdrawal symptoms a year later even though im back on them but ive done a lot of research and although some of the tardive diskenisia the involuntary movement may be permanent if you can get off all medications then the akathisia should lessen over time and go away. Im praying for you and myself. Do your symptoms the akathisia lessen at night? What mental symtoms do you have from the akathisia? I feel uncontrollable terror fear torment like i have to get out of my body i need to escape my brain flips and i am lost in psychotic terror and my body feels like its in a vice. Are you off all meds?
I'm afraid this is what is happening to my husband.... So many drugs because of not one, but TWO BOTCHED surgeries! We're trying to find a lawyer to take our case, Good bless you, I feel your pain. From someone in a similar situation, I'll pray for us both.
Hi I would like to donate - I also would rather you get the full amount. If you can PM me on fb your address I will send a check instead. So sorry for all that you have to endure at this time. Also, I would look into getting on the list for an Angel Tree in your area for your children to have some Christmas gifts this year. :)