The Right Hand of Lightness

The Right Hand of Lightness

john connor

There’s a joy in going on a long journey in which I get the luxury of sleeping through the whole thing. It’s practically magical. Or scientifically, like teleportation. I was there and now I’m here without any effort!

I’ll never be able to afford a first-class bed on a long-haul flight to somewhere like Australia, but I did once experience this joy on one of my many pilgrimages from London to the Edinburgh Fringe Festival. In the 1980s, I went to so many festivals that I even got to write a book about the thang (“Comics: a Decade of Comedy at the Assembly Rooms,” 1990)!

I took the sleeper train from London’s Euston station to Edinburgh Waverley station. It trundles slowly and gently rocks you through the night. Blissful.

I have no idea if this service still exists, but to do it, you had to travel first class, and for that, the guard wakes you just before you arrive at 6 a.m. with a steaming cup of British Rail tea.

It doesn’t happen often, but sometimes this country can do something that is just about perfect.

I don’t want to rub it in (oh, yes I do!), but the whole thing was then polished off by staying at a posh hotel that one can enter by lift from the station itself. Rather a change from my first trip when I slept on a friend of a friend’s house floor, which was admittedly rather spectacularly sighted at the foot of the famed Forth Railway Bridge. The downside was it was a 9-mile drive in each day to get to Edinburgh and the festival!

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This reverie is apt because this is exactly how I felt on Monday afternoon.

I woke up to a finished six-hour infusion. Nurses removed the cannula from my arm while two ambulance people from hospital transport stood invitingly to take to take me home, replete with a soft-looking sheet-covered gurney. Sometimes I’ve waited four or five hours for them to turn up! I’d only managed to wake up long enough to devour a lunch of fish and chips with the absolutely appropriate mushy pea side.

Lou Reed wrote a song about a “Perfect Day“; never did I think it could be applicable to a hospital experience. In this case, though, it absolutely could.

Two years ago, I started on my long, dark journey of taking Lemtrada (alemtuzumab). My multiple sclerosis was inexorably wilting me, and this was a chance to fight it. After my very first infusion, my right-hand connection to my brain was damaged and my right arm suddenly ached. These symptoms only got worse with each infusion. Immediately, walking got even more impaired. Wheelchair tennis became a distant dream.

I could go on, but I’ve done enough of that in previous columns. Now is a time for rejoicing.

Even if it only lasts a few days, post-Ocrevus infusion has felt like having a holiday from part of my MS. My hand, though not completely repaired, has improved substantially. I opened a packet of crisps a few hours later; without resorting to using a penknife and shock-horror-bloodbath, I found myself eating them casually with my right hand.

It’s gone now, but for a few hours, I could even slightly lift my right thigh. The only time this now happens is after exertion, when clonus literally kicks in — something the uninitiated find disconcerting.

I’m among the first to have infusions of Ocrevus (ocrelizumab) at my hospital since the therapy finally received the go-ahead in the United Kingdom. It’s something I’ve fought for and has been somewhat of a struggle.

It’s also the only time in my decade-long struggle with sclerosis that a drug has improved things.

Even if it turns out to be fleeting, it’s worth it.

***

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

12 comments

  1. Johan says:

    Hey John, I’ve never flown first class but my 5th Ocrevus infusion is next month. I live in the US and am grateful to be on Ocrevus. It is my third MS treatment and I’m not exactly sure what it’s doing under the hood so to speak but I think the positives outweigh the negatives. Happy holidays and thanks for posting.

    JE

  2. Katrina Goodman-Smith says:

    John,
    I loved reading this. The thought of lifting my right thigh up is also ‘thrilling’.
    I have now had the blood tests and checks done pre-Ocrelizumab and am waiting (and waiting) to receive the letter to come in for my first infusion. Fingers crossed it’ll be soon.

  3. Melissa says:

    Feeling better the days immediately following an infusion is because of the steroids given before/during the infusion. Ocrevus DOES work at reducing relapses and helps the body to recover which will reduce symptoms, but it’s not going work THAT fast. Any immediate relief is 100% a result of steroids.

    • John Connor says:

      I beg to differ – I got steroids with Lemtrada & it kept some semblance of sanity. But there are none with Ocrevus – just an antihistamine. I know journalism these days is littered with ‘opinion’ but I’m old enough to be old school & say it like it happened. Anyway, I’ve had enough steroid treatments on their own to know they don’t have these effects.
      I maybe not recovered enough to march in a parade but kindly don’t rain on it!

  4. Karen G says:

    I really enjoyed reading your column John. First, it sounded so relaxing that I am ready to book a train trip to Edinburgh! I also have a hankering for some fish and chips now as well. Second, thanks for sharing your experience with Ocrevus. Please continue to give your honest and open updates. Any improvement is still a step forward.

  5. Cynthia King says:

    I’m glad you have seen some success, however fleeting. I notice that between infusions I seem to be ‘better’. That’s not a scientific term, I know, but I think sometimes my head is like a balloon, floating around not connected to my body, and on Ocrevus I feel that disconnect lessen. My body seems solid enough and things that exhausted me ( like a trip to the mail box) aren’t quite the chore they usually are. Good luck to you. Hope that right hand gets strong enough you are able to pick your nose whenever you like. lol.

  6. Dottie Gehrett says:

    Thank you so much for sharing your experience with Ocrevus. I’m going to start Ocrevus soon. I used to take Rebif, which worked very well, but sadly I had an allergic reaction after 6 months. I then took Copaxone which was horrible to me to say the least. I’m looking forward to only having infusions every 6 months instead of having to inject myself every other day. I have only heard good things about Ocrevus. You’re a wonderful writer!!

  7. Gregory says:

    Being progressive,at 55,I was on Plegrity,nasty side effects,but I could walk.On Ocrevus since 7/17,I’m worse now than ever. Cant work,balance is worse,walking with a cane.2/19is my last one.Told doctor done with it. I need daily,weekly medicine. 1st does lasted 3months,2nd 2months,3rd 5wks. 6 month infusions to far apart.All big hype before its approval.

  8. Janet says:

    Diagnosed in 1994 with what turned out to be PPMS after 17 years of mild symptoms until 2011. I’m looking forward to my 2nd infusion of Ocrevus & it’s encouraging to hear positive results!

  9. Kelly Wheat says:

    My doctor has strongly suggested that I go on Ocrevus, but I am getting conflicting information about hair loss. Did you lose any hair? When reading the side effects it doesn’t state anything on hair loss, but when I look up reactions from a patient’s perspective, there are many people saying they had hair loss?
    Did you experience any?
    Thank you so much for taking time to answer, I am ready to have the infusion, but Im very worried about my hair. Thanks so much.

    • John Connor says:

      Well, I’m 61 so my hair is leaving of its own accord! Not fast enough in my opinion – so no, Ocrevus has been no help with that!
      MS is far more of a worry than your hair!! So far it’s the best DMD I’ve had.
      If u don’t take the opportunity it will be a real loss…..

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