‘All Change Please, the Medical Equipment You’re Using Ends Here’

John Connor avatar

by John Connor |

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It’s all happening at once.

Yesterday, a box turned up with my new lymphedema wraps, which use compression to help reverse my lymphedema symptoms. I’ve been waiting for the wraps for nearly a month. It turns out I’m such an unusual size that they had to be imported from Germany. Not, I hasten to add, that my lymphedema has spread out of my legs, but because my legs seem to be too long.

I still manage to stand up a couple of times a day on my trusty Molift Raiser, where I’ll occasionally pull myself up to my full 6-foot height and glimpse the copious lavender growing in our front garden. The bees love it!

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The wraps are from a company called Juzo, and they’re definitely a step up (if I could manage that) from the previous ones, in which I looked like something out of a 1930s Universal Pictures horror film.

Now I look like RoboCop!

medical equipment \ MS News Today \ Columnist John Connor's legs are wrapped in an older version of compression wraps to combat his lymphedema

I used to be the daddy in this house until I turned into “The Mummy.” (Photo by John Connor)

It’s taken a while for my family and my caregivers to work out how to attach the new wraps. But they are actually far easier and better for fighting the accumulation of lymph fluid. They even have knee wraps. It turns out that everything else on me has shrunk since the last time I’ve been able to go to the clinic, which is about two years ago, except my knees.

The Juzo wraps are also less dangerous. One of my previous caregivers hurt her wrist so badly while putting the old ones on that she had to take time off work. Unsurprisingly, I never saw her again. I say hello via my other carers.

Considering how long lymphedema seems to have been around in this world, its treatment seems to have improved very little over the millennia. (Yes, millennia!) According to The Healthy Voyager, “In perhaps the first pictorial description of lymphedema, Princess Ati of Egypt is shown with oversized arms and thighs in a relief sculpture done almost 3500 years ago.”

The next reference was to Hippocrates — yes, that Hippocrates, the Greek physician credited with creating the Hippocratic oath. The Healthy Voyager notes that, “Hippocrates mentioned the lymph nodes located in the groin and armpits in writings around the 5th century BC.”

So, well done Juzo, and well done National Health Service for finding and accepting new medical equipment.

Medical equipment \ MS News Today \ John sports his new lymphedema wraps on both legs

“RoboCop” lounges around the house in his slippers, “Deadpool” style. (Photo by John Connor)

Crisis has also just been averted with my anal catheter, which is supplied by the company Coloplast Charter. The item’s trade name is now Peristeen Plus Transanal Irrigation System.

A while back, Coloplast Charter sent out a survey about their products, and I’m dimly aware that for a change, I actually filled it out. I seem to be one of many who pointed out the difficulty of using the Peristeen system by those who are one-handed. The company seems to have listened and switched to the “Plus” system practically overnight.

It works like a charm, but I seem to be one of several people who were sent new catheters, but not the device itself. Because they are not compatible, and I have to use it every day, I was literally in a bind.

Thankfully, they whizzed the device over the next day. Crisis averted.

So, that’s two new boxes in two days. It’s been all go. Er, this time, literally!

What else is new? I was fed up trying to cut paper with my left hand. Sometimes my right hand works enough to do it, but mostly not. I kept thinking it was just something I’d eventually learn how to do.

That was until, as usual, my wife, Jane, looked at me, sighed slightly, and told me about left-handed scissors. I know ephemera about all sorts of minutiae, which was only expanded upon by pandemic lockdowns and the extra time I had to listen to innumerable podcasts. But when it comes to something practical, I have no iota of an idea.

My new scissors turned up this morning. Eureka! I can cut paper again. They are a real snip at £2 ($2.78).

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Wendy Hovey avatar

Wendy Hovey

John, I am so glad that you have been able to resume making paper dolls. Once you've completed an entire family, including one member in a chair, I hope you will grace us with a photo.

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John Connor avatar

John Connor

I will, once I complete the Gothic haunted mansion to stick them in!
Cheers John

Reply
Penny-Marie Wright avatar

Penny-Marie Wright

You can also get left handed knifes. I don't know how they are different than the ones I use but my mother had one she uses. Also if you have a problem with cutlery she has a set she carries with her that have extra thick handles because restaurants mostly have them with very slim handles.

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John Connor avatar

John Connor

Have had the large handled knives for ages, Ta.
Obvs haven't eaten out for ages but cutlery had a habit of being chucked around like an angry two year old. Now I'm probably more of a trained monkey!
Cheers John

Reply
Leslie Benoit Willis avatar

Leslie Benoit Willis

I also had a problem with lymphedemia. I'll tell you what I did and maybe it can help someone else. After suffering with lymphedemia for a year, I decided that it would never go away unless I got proactive and did something about it. I found a Cardiovascular Surgeon who opens the center of the valves in the legs below the knee so the edema is not trapped there. My insurance covered these outpatient surgeries. What my insurance also covered was 6 manual lymphatic drainage treatments to help send the edema back up my legs while I was waiting for the surgery. I checked the websites of licensed massage therapists in my vicinity to find someone who was trained in this procedure. I couldn't believe the results. Going twice a week, while waiting for my surgeries, made a world of difference in how my legs and feet felt while trying to get around. Before the surgeries my legs looked and felt like elephant legs. Now, if it wasn't for the cell phone pictures my sister took, I never would have believed there could be that much of a difference. The difference is so dramatic that if my health insurance didn't cover it, I would have found a way to pay for it. It helped that much. Good luck.

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John Connor avatar

John Connor

Haven't heard of such a surgery, interesting. But if u can still walk, at least there is some way for your lymphatic system to still work! Doubt in the UK, our NHS would sanction such surgery. The specialists I know see were also very dismissive of lymphatic massage. Have to say, my current new regime is pretty darn successful. Though time consuming, to apply/remove the wraps.,

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