My vaccine injury story relates to my partner Daniel. He was a healthy active busy 42 yr old man. A father to our two beautiful children, Olivia and Alexander; a valued employee and volunteer fire fighter for our small town.
He got his first jab in late August 2021 and within days began to feel unwell. At first not so much that he bothered to visit the doctor as he expected it to go away but it didn't. He got chest pain, out of breath after walking short distances, his limbs would go numb or tingle, tinnitus constantly.
He thought he had a gut issue as his lower abdomen ached and his testicles and lymph nodes were swollen for months.
Our family doctor ran blood tests, urine tests and checked for h pylori, he got a positive for h pylori and was given tablets. But the pain didn't go away, the lymph nodes stayed swollen.
He carried on with life and went to work and tried to take care of his family but it got more challenging.
In early December he found he was exhausted from walking a short distance, he couldn't hold a key still enough to get it into a lock, he couldn't hold a conversation, he knew what he wanted to say but couldn't get the words out.
The muscles in his legs began to tremble and he would get goosebumps and rapid muscle trembles if he talked for more than a few minutes.
He phoned the doctors to try get an appointment with his doctor, the nurse brushed him off, told him it was just anxiety, to go home and rest for a few days.
So he did and when two days later it hadn't got any better he called an ambulance as he was concerned something was going very wrong. Three ambulance officers arrived promptly and asked lots of questions. He was taken off to Kawakawa hospital then transferred to Whangarei Hospital for an overnight stay.
They did a CT scan and monitored his heart as they were initially thinking it could be a stroke. All the tests we were told came back ok.
I picked him up on the Friday afternoon, we went home and had a quiet evening.
On Saturday we took the children to the beach in Paihia and it became apparent just how different Daniel was, it was like walking an 80yr old man along the beach, he could either walk or talk but not do both together. We went home for dinner and Daniel had a brief 18 min Skype call with his mum in Germany to update her on his health. He had to end the call as he didn't feel well. His mum had got very emotional upon hearing that they had let him come out of hospital, she is a nurse with many years paramedic experience.
Then while Daniel sat in the chair his whole body began to tremor and shake, it was very disturbing, he was fully conscious but couldn't stop the shaking, it seemed to come in waves with brief 15 seconds of calm them returned and went on for about 20 mins.
I called a second ambulance as it was after 9pm at night, the kids were asleep in bed and we didn't want to leave it unchecked. The ambulance arrived with two of the same officers as earlier in the week, one of them was annoyed with the hospital for releasing Daniel and telling him he was ok to drive and not giving any guidance or warning that this may occur. He had no issue with driving him to hospital and said he would rather be with him than drunken Saturday night people. He did have some more tremors in the ambulance and again at Kawakawa Hospital, which a nurse witnessed with putting and IV line in. He was really struggling to speak at this point. They offered him a sandwich and he found it hard to express which he wanted, he couldn't say 'I need to go to the toilet' only 'toilet'.
Daniel had another overnight and was discharged Saturday afternoon, the doctor reassuring him it wasn't life-threatening and that they had a good idea what they though it was but couldn't say until an MRI was done. They booked him in for the following Friday in Whangarei.
After the MRI Daniel was asked to wait so they could discuss the findings. The doctor explained that something wasn't functioning quite right and likened it to a software malfunction on a phone. He suggested Daniel go home and relax. Maybe do some meditation and yoga and wait and see, it could be 3,6,9 or 12 mths that would be needed to let him recover. The diagnosis was generalized neurological disorder which covers a wide range of conditions.
Daniel has always been a hard worker, he has always been efficient and quick to solve problems and complete tasks. He followed the doctors suggestions, stopped work and over the course of December and January had the longest holiday of his life. People joked he had timed it well to avoid the busy summer rush. He works at The Duke of Marlborough Hotel in Russell so his absence was really noticed during their peak summer rush.
Daniel tried a gradual return to work in February, two hours one day a week. He was actually there all morning but needed plenty of rest breaks between active periods. He found that it was best not to try hold conversations with people as the twitching increased and made it harder.
Daniel is now working two to three days for two hours each day with lots of breaks between. Luckily he has discovered that a pair of ear muffs and an eye mask are his best friend to help reset his brain and give him chance to calm down the twitches so he doesn't have more trembling episodes.
The children have learned to give Daddy quiet time and a change to rest or sleep. It has stopped our weekly visits to the mountain bike park as we can't risk him getting into difficulty as his balance isn't always good.
It has been so hard to deal with, from telling people who look and you and disbelieve, to trying to get appointments and get answers. We have paid to see a urologist and neurologist privately. The urologist could see that something wasn't functioning quite right but was at a loss to explain it. The neurologist was incredibly rude, asking Daniel to tell him the story of what he had been experiencing then telling him he was welcome to waste his whole appointment telling stories or he could make it brief so he could run tests. He said he couldn't say for sure but Parkinson's may be possible but he would want to see him again in 6 mths. He got very defensive telling us he was the most qualified person to diagnose Parkinson's. We were not questioning his ability or diagnosis, I think we were just a bit shocked. We felt we needed to pay to see a neurologist as there is no neurologist in Northland - one comes up from Whangarei a few times a month so we suspected the wait time could be very long.
It's been a really tough time for us as a family, Daniel was the sole earner as I focused on taking care of the kids and home. Our children are 6 and 9. We have had to sign up with Work and Income - not something either of us had much experience of and I still feel ashamed that we have had to do that.
We have to look at the positives, Daniel doesn't have Cancer or a tumour or Pericarditis so far as we know and hopefully he will recover from this. We have had lots of lovely family time. His employers have been very understanding and supportive. The rest of the family are healthy and we support each other.
I just don't know where we go from here. ACC have pretty much told us they are likely to decline our claim as they think it would fall under degenerative causes so they won't cover us. No idea how long WINZ will be willing to pay us.
We are in the process of setting up a micro greens business that Daniel can do from home. I have found part time work that is flexible to work around the kids, Daniel's health and appointments etc.
It has been so very hard but we are trying to stay positive and hope he can recover.
That is our story, please get in touch with any questions. We don't want others to suffer like Daniel has. It's important that we speak up and not stay silent.
Thanks for taking the time to read this,
Jenny and Daniel