 Charming, outgoing and always ready with a oneliner – his speciality? – telling jokes in Genoesedialect! Giulio worked for years as a truck driver. His first MS symptoms were attributed to tiredness associated with long road trips and then he was misdiagnosed with a back problem.
In 1991 he was finally diagnosed as having MS.
Giulio experienced spasticity after only a few years with MS, in 1996, and since its onset it has been a constant presence.
How would you describe your spasticity?
Spasticity is a very annoying problem and it affects my left hand, arm and both legs. It feels like my arm retracts with cramps and my hand tends to close up into a fist and I can’t reopen it. My legs are very rigid.
You’ve been dealing with spasticity for 10 years now. Has it changed in any way over time?
Unfortunately it has only worsened with time.
Personally, I’ve never experienced periods of improvement, even if I’ve tried different therapies and devices. For example, at night I use a device that keeps my hand open. It gives the slightest bit of relief but actually doesn’t help too much.
Are you taking medication for spasticity?
I’m taking baclofen. In the past I even tried the baclofen pump. The point of it was to benefit from the slow release of medication but I still couldn’t tolerate it. I was always tired and weak and most of the time felt like jelly. So I had the pump removed.
Have you ever tried an alternative therapy?
Sure. I’m currently trying acupuncture. My rehabilitation physician suggested that I try it. I began three weeks ago… let’s see what happens!
For now it seems to be working. At night my hand is less painful than it usually is. Maybe the needles relax some parts of the body. I’ll try everything! I’m not planning on giving up.
Do you do physiotherapy for spasticity?
Yes I have had physiotherapy. I was prescribed physio three times a week for three months. I also did occupational therapy at the specialised MS rehabilitation centre I attend. I think it definitely is important to try different treatments, even if, for me, I still haven’t found the solution for my spasticity. Unfortunately spasticity is here and it looks like it’s going to stay.
In your opinion would you say that spasticity is one of the most difficult symptoms of MS?
Definitely. I would say spasticity is the most disabling symptom too. It puts a lot of limits on a person. But mostly it can put you in a position where you have to ask others for help.
So your experience is that spasticity impedes you from doing what you want or need to do?
It stops me from being autonomous in many things I’d like to do on my own, without help. For example, I need help with eating, cutting food on my plate and opening a bottle. I try to be as autonomous as possible even if it’s not always easy.
What helps you cope with the challenges of spasticity?
For me the most basic thing is not to let spasticity and MS get the best of me. I’m a naturally positive happy person and these qualities really help in
dealing with MS. I certainly don’t pass my days thinking about everything that’s not right. I believe that complaining and worrying serves no purpose, and neither does always talking about MS! My advice to others dealing with spasticity or any problem related to MS is this: focus on the fun things in life and not on the negative aspects.
What is something fun that you focus on?
For example, with the local branch of the Italian MS Society, we’ve created a theatre group and soon we have a performance scheduled for a very famous theatre in Genoa. I play the part of a director of a lunatic asylum. It’s great fun!
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