I walk the places I used to scoot…

I have been rather quiet on here for the past couple months. I have needed to take a life break with everything to concentrate on my health following me starting a new medication, Ropinirole’, during lockdown 2.0 (Nov). For those of you who aren’t aware, alongside MS I also have an underactive Thyroid which resulted as one of the side effects after a course of my Alemtuzumab (Lemtrada) treatment, of which is managed with Levothyroxine tablets, as well as early onset Parkinsonism (further information on the difference between Parkinson’s Disease and Parkinsonism can be found here and here). I have never been on treatment for this, and as a lot of the symptoms can mimic MS (and vice versa) such as a tremor, slow movement, muscle stiffness, and impaired speech; all of which are symptoms of MS and even Thyroid Disease to an extent, it is somewhat of a battlefield to plough through where finding the right treatment is concerned.

Various MS treatments haven’t quite been ‘hitting the spot’ if you will until I had an appointment with a consultant in November which was over video call so he could see the effects the sheer chronic pain, the muscle twitches, numbness etc. (I could go on but you get the gist) was having on my walking, gait, and hand grip with all of my symptoms going on. Not to mention that I could also precisely point out exactly where the pain was in my leg, which can only be described as a sharpy shooting pain that gradually creeps up my  legs (more so my right) from the bottom of my shin all the way up to my thigh where it eventually ends in my entire leg stiffening up as the pain is released…and then it will momentarily start up again, therefore making it extremely difficult to walk. 

The consultant asked me how I felt about starting a treatment for Parkinsonism, and how comfortable I would be maybe giving it a go with starting me on an extremely low dose and monitoring it every 2 weeks, increasing/lowering the dose depending on the effectiveness. It was also refreshing to hear that if Ropinirole wasn’t working out for me that there were a couple of other options I could also try including a ‘Rotigotine neuro patch. Like with many medications Ropinirole can come with quite a few side effects, especially when the treatment is first started and these are the ones I experienced, which did thankfully subside after a few weeks; a few hallucinations, nausea, dizziness, and increased double vision. Due to the drug causing drowsiness it is advised to take at night 1-3 hours before you go to bed, and with my symptoms not taking a break just because I am in bed, the 24 hour lasting effects of the drug was certainly welcomed.

I felt the effects of taking Ropinirole an hour or so after taking my first dose. The tremor subsided, there was none of that shooting pain in my leg, my fingers and legs were no longer twitching, nore was I experiencing muscle stiffness. I had the best nights sleep that I have had in years. I awoke in the morning with none of the usual symptoms waiting to greet me to the extent that they usually do, it was incredible! I had my 2 week review and my dose was slightly increased, but if the side effects were to persist then I was to come off it, but they gradually went away thankfully. 4 weeks later and my dose was increased again, and where I am remaining for the time being at 1mg.

With all of that medication and dose information being fired your way, lets talk about the positive effects Ropinirole has had on my life;

  • I haven’t needed to use my walking stick for about a month now, the same goes for my mobility scooter.
  • Whilst I still experience slight pain, muscle stiffness etc. I can distinguish what is MS and Parkinsonism with more clarity now.
  • My entire body generally feels more at ease, looser, less rigid, and a lot more relaxed.

The most noticeable difference is my walking and gait, it has been like learning to walk again, literally, and little by little this has improved over the past 2 months and I can now comfortably walk around 5km at a good pace without a walking aid. Alongside this, last week I went for my first run in over 2 years! Something that I have missed so much, and honestly thought that I would never be in the position to do again. I cannot even begin to explain the emotions that went through me as I was running away in my running gear after I dragged it out of the depths of storage, and completing 2.8km. I have since been on 2 more runs, and like with my walking this is something that I will be slowly chipping away at. 

Whilst Ropinirole has had a life changing effect for me, I cannot lose sight that this is not a cure. I can still relapse. I can still progress. I still have my limits. I need to rest. I still have symptoms and daily battles, especially with my MS, but my health and symptoms are managed. I eat right (for the best part, I am only human with a love of cakes and sweets after all), I exercise and have really been focusing on my swimming for the last 7 months (when the pool is open between lockdowns that is!), and my mental health is, for the most part, intact ( I have my moments as much as anybody else, but they are few and far between thankfully).

When you have life-long conditions, you can find yourself in continuous string of constant ‘stop-start’ situations to cater for your ever changing health as and when it comes a-knocking. This goes for work, activity levels, socialising, plans that have to be cancelled/rearranged, achieving your goals and dreams, your finances, adaptations required in the home etc, and most importantly adapting to yourself. I had to come out of work 14 months ago due to a relapse that set me back years of working on myself and health, but as mentioned this was just another one of those ‘stop-start’ events that comes with the ‘package’.

Here I am in 2021, starting again, and I am looking forward to the next chapter.

Keep on shufflin’

2 thoughts on “I walk the places I used to scoot…

Add yours

  1. Fabulous upbeat news Hannah. The role of ‘repurposed drugs’ cannot be over stated!! Well done for persevering to find the right treatment for YOU 🙂

    Like

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