We've just put our little man to bed and slowly the last day is starting to descend. Overwhelmed and a bit perplexed I sit staring in front of me. My gaze catches your eyes.
"What the hell happened today?" I say.
"The three of us 'just' walked to the supermarket this morning. You 'just' stood next to the little guy while he was decorating a chocolate letter at the supermarket. Then we 'just' walked through the playground, where you pushed him on the swing, held his hand on the difficult climbing frame and ran after him in a circuit, walked back home. Oh excuse 'rolled' I'd better say. And to top it all off, this afternoon after you had rested, we 'just' cycled to the library a village further down the road".
Somehow I know this feeling, but it's really been so long. Take the library. I can't remember looking around so unconcerned for myself while you and the little man were with me.
"I just got my wife back." I whisper. Tears of happiness and emotion glisten in the corners of our eyes, while we hold each other tightly and let the day calmly sink in in a deep entanglement.
It was quite a quest before she was finally diagnosed with HNA (see explanation below) in June 2015. After a few wanderings through the government, we bought her a mobility scooter ourselves at the time. This had to be a special one for people with nerve pain. Also the steering should not put too much strain on her shoulders, arms and hands. In the beginning she could still use it reasonably well, but steering became more and more difficult. At a certain point she could no longer accelerate because of the static load on her hand. Eventually, in March 2017, we had to resign ourselves to the fact that the HNA would limit her freedom for the umpteenth time. The mobility scooter was permanently stored in the shed. It didn't work anymore.
We borrowed a push wheelchair from the local care aids shop, but this was hell. Her nerve pain caused her to feel every bump, every obstacle, every threshold as stinging burning pain. I sometimes say, it's just the difference between riding your own bike or sitting on the back and that with nerve pain. Just don't do it.
Every outing was a stroke of exhaustion. Of course you do that as a mom of a 6 year old, but believe me, the price she paid for that every time was not wrong. You get very picky about what you're gonna do and what you're not gonna do. Estimating every time how much this is going to cost and if it is worth the energy. Soon the outings were limited to Christmas celebrations, 10-minute conversations at school and the occasional visit to a playground or garden centre. She couldn't get out the front door without my help and even then it was done. Just a short walk around the block, or picking up a bunch of bananas from the supermarket was no longer possible.
Somewhere in September 2018 a fellow sufferer pointed out the Genny mobility. This seemed to be a godsend. A wheelchair that puts you in motion with your torso muscles. Steering still worried us a bit, but according to the fellow sufferer mentioned above it was quite easy to do. We delved into the product and ended up with the Freee F2 of 2Kerr in Oss.
For a moment a CVA in February seemed to throw a spanner in the works. The balance on her right side was affected and so was her core stability. The question was whether it was still strong enough to operate a Freee. Fortunately, this fear turned out to be unfounded when we went for a test drive in Oss somewhere in the middle of March 2019.
With the help of 2Kerr, our occupational therapist and the rehabilitation doctor, we applied for a Freee at the government. On November 22nd 2019 it was finally time for Sabine to pick up her Freee F2.
Soon Segway was renamed Sabway. What he brought her, no better said our family, can't be described with a pen. Call it "ordinary life".
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Sabine has HNA (Hereditary Neuralgic Amyotrophy) the hereditary form of NA. A condition of the nerves that is characterized by recurrent attacks of pain in the shoulder, arm and/or hand, followed by total or partial paralysis of the muscles in these areas. People with the hereditary form have more frequent attacks in their lives.
Neuralgic amyotrophy means: A weakening of the muscles associated with nerve pain. The brachial plexus is the wickerwork of nerves in the spinal cord, in the neck at the level of the collarbone. These nerves control the muscles and the feeling in the shoulders, arms and hands. Nerves outside the area of the brachial plexus can also be affected, including the lumbosacral plexus (which leads to pain and leg failure) and some cranial nerves, which can cause hoarseness or swallowing problems, for example.
The nerve to the diaphragm can also be damaged, causing tightness when bending down and lying flat.