Last reply 1 year ago

So lets upset everybody.
I have Primary Progressive MS, diagnosed 9 years ago so I am officially part of the forum but my ideas are a bit different.
I do not think there is a simple cause of MS, like a disease bacterial or viral, which can be treated. Sadly is is very like a lottery, there are millions of potential combinations which have no effect whatsoever. There is a combination which can have an effect, sometimes a partial effect which can be “treated”, hence the miracle cures, or fully effective which cannot be treated but it can be alleviated..
This is NOT DOOM and GLOOM, the symptoms can be alleviated both in frequency and severity and the treatments are improving all the time. Yes the Autoimmune System makes holes in the Myelin sheath which covers the nerve bundles but it can also repair the damage and can be assisted, this is where I suspect diet can be effective. I say suspect because I am not a Vegan or Vegetarian, I just try to stay fit and healthy.
I smile when sufferers list what they cannot do, say they cannot run. OK, I ask when was the last time you ran prior to diagnosis, it was usually decades ago, so that is not really a “can’t do” anymore. So go through what you used to do recently but cannot do easily anymore, the list just got shorter.
I used to drive and decided to stop about three years ago because my reactions were too slow and were becoming dangerous. I swapped the car for a mobility scooter and using a combination of scooter and train I can go everywhere faster and easier than I could before. I also bought a a smaller collapsible scooter that I take abroad on holiday, so far I have done the Rocky Mountaineer in Canada and a trip to New York for some retail therapy, done a tour of North and South New Zealand and a three week tour of Italy.
As I always say “I am not DISABLED I am DIFFERENTLY ABLED” so are many people I meet. MS is not the end, it is simply a readjustment and adapting to changed circumstances. I am not an evangelist, I an just being practical, there is a whole world out there and you are part of it.

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1 year ago


Good for you; always keep going.

Life is a journey & we all know the destination. Have fun along the drive…

1 year ago

@frankoz , why would that upset anyone? It is sound advice. ๐Ÿ˜‰

1 year ago

Haha @frankoz, your opening line almost put me off of reading so Iโ€™m glad I did! Love your positive attitude and spin, especially โ€˜differently abledโ€™. Thanks for being inspirational ๐Ÿ™‚

1 year ago

Absolutely, adapt, overcome and live we all should keep a positive attitude, I agree with your outlook @frankoz – nice ๐Ÿ‘

1 year ago

Great post, I am also a practical person who makes the most of life. I also smile when I newbies lament about not being able to run. I am just happy to make it across the street before someone runs over me. Potter

1 year ago

Adapt. Correct. Thrive. Even facing difficulties, sorry, especially facing difficulties.

Good contribution @frankoz!

1 year ago

I love your positive attitude and to a degree, I feel I am very positive to and try not to worry about the unknown.

However, I dont think it is all correct. I am classic case of what I cannot do know compared to what I used to be able to do. Back in 2015, I ran two half marathons, two 10 milers and numerous 10k runs. In 2016, I ran another half marathon and a 10 miler. Role forward not even a year to early 2017 and I struggle to walk 2 miles.

I agree with positive attitudes, but the “I cant do what I used to” isnt always something that I used to do 15 years ago.

But, I honestly say, do keep up the positive attitude, and I say that everyone of you good people. I will too.


1 year ago

I’ll probably get shot down for this too but people tend to concentrate on more what they can’t do to what they can do.
I know MS is different for everyone, I get that, I really do.
Heck I used to train 4 or 5 days a week and have comps on weekends, could I do that now…no, am I bothered, not really as I was 20 and a spring chicken.
Getting up for my munchkins, going to work, doing things with them and going on walks or bike rides or just generally getting out is what I class as a win these days. Heck getting out with the girls for a night out is a definate win even if I do pay for it the day after ๐Ÿ˜‚๐Ÿ˜‚!
What I’m trying to say is there is no point looking back, road moves forward so concentrate on the good things and the stuff you can do ๐Ÿ˜Š.

1 year ago

love the positivity and the adventures you have taken yourself on, bravo!
it is very important to stay positive, it’s all we have in some ways whatever our level of ms symptoms and how they effect it, we only feel our own pain/changes. stay positive!
i keep chipper probably 75% of the time if i’m honest. I’d like to improve on that.
that other 25% is v bad, hits me like a brick, from nowhere and i have to drag myself out of the darkness.
My kids keep me busy, i work from home and i’m an active mum and partner.
any sense of achievement, no matter the size, can really help boost moods.

today i had a three year old all day to myself, we painting, baked, made thank-you cards, rested on the sofa together, read, cooked dinner. it felt like loads. it WAS loads but a tiny bit of me wanted to be out of the safety of home, on an all day adventure with him on my back, marching through woods with our dog, spending all day at a farm…etc. i have to let that go.

as i always say – it is, what it is.


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