Paula Mieczkowski

Recently, one of our new members revealed that he gained a Master’s degree in Philosophy since his diagnosis. It’s quite possible that he may have been heading down this route anyway. But it got me thinking – with the complete change in lifestyle forced on us with MS, we might make other changes as well.

I seem to have returned to jou…[Read more]

There are moments in life that have surprising effects on all of us.
I had two: Around 9, when I was informed by my mother that my headmaster had been told when I disappeared for a few hours after school. Fair enough in hindsight. I went off to play with a classmate at his home. It turned out to be, for a 9-year-old, what seemed like a magical…[Read more]

Now that I’ve somewhat recently joined the Secondary Progressive (SPMS) crew, any medicines that could possibly help us get my full attention. There’s not a lot!
New drug foralumab has miles of road testing before it would become available in any of our MS service stations. It does this: ‘Six months of treatment with foralumab nasal spray led t…[Read more]

I have a pretty eclectic background – so I’m willing to chat about anything, except American sports. That one is beyond me. Even by cheating via the net. Though tennis I can certainly manage.
The point of this Forum is to get communication going between us. For many, MS can be an isolating experience. I’m still having to be extremely cauti…[Read more]

Sorry for the Northern World bias. If you’re in the Southern hemisphere, tell us how your winter went. For the rest of you, let us know about your summer.

Any news to report? Problems traveling as an MS patient? Did you stay at home and why?

Me, I stayed in place. Now I’m limited to a hoist to get into bed, and it has been a hospital one at…[Read more]

We undoubtedly spend all of our energies dealing with MS. Most of mine is spent exactly the same.
Instead of dwelling on misfortune, let’s drum up some positive events and things to discuss.
My main relaxation is watching films, series and the news. The variety is enhanced by still being able to afford a range of streaming services, living in t…[Read more]

Have any of you gone away on holiday lately? Or indeed have one planned?

I sometimes wonder, for those of us in the Northern Hemisphere, if we hide in the summer. Especially from direct sunlight. Like the classic vampire. After all, 80% of us are affected by the heat.

If you did get away. Please tell us what it was like. Did your MS affect your trip?

OK, smartie pants with your own air-conditioning – not everyone has it. This is especially if you live somewhere like the UK, where current global heating has caused a drought across Europe.
Our Met Office has us under an amber heat warning this week. Still, it’s not the red one of a few weeks ago.
My tip is to keep your curtains/blinds closed whe…[Read more]

Fatigue used to be what I hated the most about my MS. Wheelchair tennis sessions started out well – by the end, oh dear.
Now that I’m in a powered wheelchair, the list of problems has grown exponentially. Not sure of my current myriad ones which I’d choose. Force me to pick one by starting a conversation about yours.
As MS affects all of us diffe…[Read more]

Using medical marijuana helps me significantly when it comes to managing my spasticity. However, for various reasons, I can’t get any right now. As such, I’m relying on diazepam at a level that isn’t healthy.
Do you use medical marijuana for managing spasticity?
Cheers John

If you get Mental Fatigue, have you tried to do anything about it? In my case, it was like working through a rasping smog.
My neurologist eventually solved mine with modafinil.
As with any drug they have different effects on all of us. Tell me your experiences, please.

Calm, calm, calm.

Beer drinking maybe a risk in causing MS but there doesn’t seem to be any statistical risk in making it worse once you have it. Phew.

The overall data in the report illustrates recent studies have been very mixed.

Which is a relief as the occasional (OK mostly daily can of beer) is one of my few pleasures. Especially as I s…[Read more]

Though MS is not itself a terminal disease, our chances of dying earlier than otherwise are likely to be some 75% higher.
Not a great start to a topic but there is at least some upside. If you have a private pension in the UK and make it to retirement age, with a disease like MS you can opt for an enhanced annuity. This gives u a fixed annual…[Read more]