(Photo description: A personal alarm system)
If you have read my blogs before, you know that my train occasionally makes an unexpected change of track. Sometimes that is not a pleasant experience but other times it can lead to reassurance.
My illness is completely unpredictable. I can tell you a lot about the possible late-onset symptoms of CRS. But I cannot tell you if and when I will experience these symptoms.
It is unpredictable in the sense that this morning went well. I’ve been able to Skype with my dad, hobble around my house to do a few small household chores, and I’ve also managed to eat more than instant soup for lunch. Now I’m nice and warm under a blanket in the lazy chair writing this blog. But later when I finish it and I have to go to the bathroom, I don’t know if I will be able to stand without falling against a cupboard or the wall. I’ll have to wait and see how my body decides to behave at that moment.
I have walking aids, such as a walking stick, quad cane and walker. I could also use my wheelchair downstairs if there really is no other option. I also have an Apple Watch and can tell Siri to call the nurses if needed. But what if a resource is out of reach? What if the Apple Watch needs to be charged? During the week I am always home alone during the day. So that would be a problem.
I would also like to have a little more freedom in my home. Dare to go upstairs where it is warmer and also where the DVD player is also to watch a DVD. Not having to wait for my carer to come home to do certain household chores. Which I could manage just fine if I knew for sure that I could stand upright.
My carer would also like a little more freedom. Not feeling like she has to come straight home from work when I’m having a bad day. Not having to think about when she wants to go out. Because she won’t if she sees me walking around like a drunken turtle when I wake up.
I came up with a solution for this a few weeks ago. I’m already getting help from the community care team. So I have a Clavisio hanging. I could then arrange a personal alarm. Then I can call for help even when I’m lying on the floor and the Apple Watch is charging.
I have also been in other situations where I could have used help. Collisions between my head and a wall. Banging headache, vomiting and not getting to the toilet in time. I can often solve difficult situations myself, but that personal alarm could come in handy.
So I submitted an application through the same company where the Clavisio comes from. Within a week a mechanic boarded my train to install the alarm and put a large emergency button on my wrist. Although I must say that the installation wasn’t complicated. I was just a little bit annoyed by the type of alarm I got. I only know the old-fashioned system that has to be connected the landline phone. But no, old-fashioned me who wears an Apple Watch and should have known better had to get used to a GSM system. One of those that has to stand next to a window and not in the beautiful spot I had made available for it.
The technician placed it on my dining room table, plugged it in, pressed a few buttons on his iPad and it was ready to test.
‘Do you know your doctor’s details? Because that’s what the call center employee is going to ask for.’
“Yes, I know that by heart.”
“Okay, then you can press the button on the wristband.”
I did that.
“CALLING!” the device yelled through my living room. In fact, I think even the neighbors could have heard the device screaming. Within 10 seconds I heard the familiar sound of a telephone that you hear in your ear when you call someone. The red lamp of the emergency button on the device itself went out and a yellow lamp came on. A friendly female operator answered the call.
“Is it the first connection?” Her voice came through the machine loud and clear.
“Yes” I said. A bit intimidated by the volume of the device.
The engineer took over the conversation for a while. But that was not really necessary because I could answer all the questions from the operator myself. Before the end of the conversation, the technician asked whether the volume is good and audible.
“Actually, I’d like it a little softer,” I said politely.
“But don’t forget that you should also be able to hear it in the hallway or near the toilet. Because the operator can also understand you reasonably well from there.”
He was right about that. In fact, I think I could even hear the device from upstairs.
“Can I shut off the alarm then?” the operator asked.
“Yes,” the mechanic and I said in unison.
After wishing each other a good day, the operator hung up and the machine made three beeps to let them know that the call had ended. The yellow light went off and the red one came back on.
I asked the technician questions regarding the buttons on the device. Particularly the green one.
“The button on your wrist can be sensitive. If you accidentally press it, you can press the green button on the device to cancel the alarm call. But you have to be quick. Please don’t run for that. Just calmly tell the operator that you accidentally pressed the button. It happens to them every day. They’re used to it. The button is also water tight. So you can carry it around the house. Even in the shower. If you press it and the operator doesn’t hear from you after asking twice if you’re okay, they will still send someone to you. Did you have any more questions?”
“Nope,” I said happily.
The mechanic indicated that he was happy that I was friendly and enthusiastic. One of the easiest installations he had ever experienced. Yes… I chose this myself. Even though I think I’ll jump a mile if I press the button accidentally, I do want it in the house and will wear the wristband.
I’ve had it for almost a month now and I’m used to wearing the wristband. It’s on my right wrist because I still wear the Apple Watch on the left. I’ve used my right arm everywhere. Loaded into the washing machine and tucked it into the leg of clean jeans while folding laundry. Put my clean bedding in a chest with that hand. I wore it while doing the dishes and even fell asleep with it on my wrist. The alarm has not accidentally started calling. So I don’t think I pressed the button.
I did move the alarm though. Because my dining room table is for eating, not calling. I have placed an old-fashioned telephone cabinet next to the table. The alarm is now there. Next to the window, as it should be. So it still has its own place and is still a bit old-fashioned!
Somewhere deep in my brain I feel old. I’m only 39, but such a personal alarm can quickly make me feel like I’m 70. Still, I’m determined to see it as a tool. I have a disability and no longer an assistance dog that barks when I am in need. But I do have a large button and that provides a lot more freedom.
I didn’t forget to give it a name, by the way. All my tools are named. It makes it easier for me to accept that I need it and that we are ‘friends’. The red emergency button on the alarm is a triangle. Kind of shaped like a human nose and… it glows in the dark. Can you feel it coming?…
Its name is Rudolph, because… it has a shiney nose! 😀
CRS Life 