My name is Pim Hardijzer. I am 49 years old and married for 11 years to Ron my biggest support in everything.
My MS story started in the summer of 2009. All of a sudden I started having troubles with my legs. They felt so heavy and I had the feeling I could fall through them at any moment. Also, the feeling in them was off. While standing on the bathroom floor one foot felt like the floor was cold while the other one felt like it was warm, a really strange sensation. At the Sint Lucas Andreas hospital in Amsterdam, I went through the a lot of tests. Lumbar puncture, MRI scans from my back and brain, blood work and so on. After about a month the conclusion was that it most likely an infection of the nerve roots. Thankfully no MS and it would subside on its own. The last part was correct after a few months the complaints almost disappeared completely.
Summer 2010 the complaints reoccurred at once, but more intense this time. At the same hospital, I more or less went through the same tests again. This time, the conclusion from the neurologist was given to me by phone. He told me it wasn’t anything neurological, he was happy that it wasn’t MS, he even congratulated me on it. It was best if I would go to a rehabilitation specialist. Between the lines, he also suggested that it could be a mental problem and that a psychologist might be an option.
Because my complaints didn’t subside but increased in intensity and my fatigue started to feel like exhaustion, I went for a second opinion to the OLVG hospital, also in Amsterdam. Over here they redid the MRI research, the results were totally different. White lesions in different locations on my spinal cord. The conclusion most likely MS. The first hospital apparently used the wrong settings with the MRI. Because the world wide criteria for the diagnosing MS just changed, I couldn’t get an official diagnosis. It took many more years before I got my official secondary progressive MS diagnosis in 2014. There in that office in the beginning of 2011 the news hit me hard and of course not just with me but also with Ron. There have been a lot of tears since then.
A shock treatment with methylprednisolone which I received by infuse during three days, shortly after the bad news, didn’t do much at all in my case. For modulating medication, I wasn’t approved for a variety of reasons. After that, I started reading a lot about MS and had the hope the disease would progress slowly and might stop for a while. No MS patient is the same not everybody ends up in a wheelchair. Never lose hope right?
Unfortunately, my MS turned out to be really progressive, there hasn’t been a brake on the progression. Really soon I needed a cane, had to trade that in for a walker, followed by a hand moved wheelchair. In 2014 I had to start using my electric wheelchair because of the loss of strength and coordination in my hands and arms. Unfortunaly my legs are completely paralyzed, but the pain in them remains, as do all the weird sensations, it feels like a carnival in there. Together with other inconveniences and they for MS so well known feeling of exhaustion, I am now really limited in what I can do and require a lot of help.
Despite everything, I still remain positive in life and try to enjoy the things that we still can do together, like going out for a nice dinner. By now it must be clear that you are never sick, alone but together. It is not just my life that has been completely thrown over but also Ron’s life. I am so happy Ron gives me the care that I need on a daily basis. This is made possible with a personal budget (PGB) which I receive from our government and enables me to buy care as I see fit. Ron quit his job in 2015 so he could work for me full time. Despite of all the insecurities around the PGB de past year and a half, I still think it’s a unique tool which I am really grateful for.
The fact there is no research done in the Netherlands about this MS treatment that already existed for cancer patients is bizarre, to say the least. One trial 20 years ago with 14 MS patients didn’t show great results. However, in the past 20 years, a lot of things changed in medical science and therefore also in this treatment. In our neighbouring country, the UK the national health service (NHS) pays for this treatment for a lot of MS patients. Unfortunately, I don’t have the luxury to wait until treatment is available in the Netherlands as this will probably take several years.
For the time being, we will be focusing on fundraising and afterwards the treatment in Israël. This will be a harsh treatment but in principle, it will stop the progression of the disease and stop me from getting worse. Improvements off my handicaps aren’t guaranteed but would be a fantastic bonus. Thank you so much for taking the time to read my story and for any donations given by you.
Never stop fighting!