I am secondary progressive here too !
it’s good to hear from others who are secondary progressive – and what a knowledgeable, brave and compassionate bunch you are!
And ironic, because having secondary progressive ms really is the pits, (The living death/torture/feeling like cat vomit daily type)
But yet you are all so courageous,helpful and compassionate – despite your many challenges – which I know only too well.
Thank you brave souls for helping us all and teaching us what bravery is – which is that we all need to learn to live with this Illness with grace, as so many of you clearly do.
I hope to get to the stage where I find the peace and maturity to do the same.
As it is, I throw regular pity parties for myself, despite knowing that logically I just need to man up and get on with what I can.
I need to be grateful for what I can do when I can. I know logically I need to do this – with courage and tenacity, knowing logically,that it could be worse – and despite knowing that it could be a lot better. But I’m not there yet – and sometimes I am miles away.
There is a raft
of information out there for newly diagnosed people, but a lot less for how to continue with a level of quality to your life,when this illness becomes unrelenting. There also seems to be a lot of expensive, pointless drugs out there – when we all know that there are a lot of people who have had a positive result from say, Ldn/CbD oil /savitex/biotin – all of course unlicensed and hard to procure.
When I saw my neurologist last, two years ago; he persuaded me to drive 100 miles to see his mate who wanted to put me on fampradine at £240 a month.
This presented various challenges to me, Notwithstanding the other things like exhaustion and lassitude; but also the water works issues and lack of job or income. Regardless, this was the only thing that was available to me. To get this drug, I had to show how much I couldn’t walk, by staggering down the waiting room like a drunken old lush . So humiliating as well. I was furious frankly – the trip left me on the sofa for three days, the stress of feeling that I misunderstood and was being stitched up by the medical profession was soul drstroying – and the lack of evidence to inable me to make an informed decision – proved to be true.
I have not heard of one person who has benefited from fampridine to date.
We feel like cat vomit all of the time, but we have the medical profession taking the Michael out of us. Nice.
I can’t afford all of the vitamins that I take – so having secondary progressive ms also robs your money, independence and dignity.
(How many of us have had to jump through hoops to get PIP?)
I personally get benefit from Cannaboid tablets at night, copious amounts of Prosecco, pork chezwan and noodles. And episodes of elementary. (I can’t decide whether I have a crush on Jonny Lee Miller or Lucy Lu tbh)
, I have self medicated with loud music, Tumeric and high doses of vitamin D, vitamin C,garlic, q10, magnesium etc …..
and conversely felt miles better and more able to mentally travail walking, (which I also realised was half the battle. Mental strength is essential, I think.)
I read the Irish dudes post with a tear in my eye. What a brave,funny and perceptive post.( It was about three months ago and about being depressed?)
I really do hope that he
got a blog up and running because it would be a fantastic read. In fact, my heart swelled for him to such a degree, I wanted to jump inside the computer and give him a hug.
And helpfully, I suddenly realised that my own challenges could have been a lot worse and I have actually managed to swerve a lot of suffering. so thank you man with the green T-shirt and glasses
For your disease to catch up with you at the prime of your life, is harsh and I commend anybody who is thriving despite such challenges and confusing treatment options.( There is small, but valuable comfort in knowing that at least someone else knows how we feel. Thank you to everyone for feeling my pain – and know that I feel yours).
I refused beta interferon 20 years ago and I am so glad that I did – despite my (now ex) husband thinking I was literally bonkers. I think I made the right decision, as I understand now it has been discontinued as a pointless and expensive experiment. (My latest appointment with the experts indicate that the only treatment available to me now is deep brain stimulation. I really don’t fancy brain surgery while I am awake – but that’s another post.)
Stumbler – you are a shining light on this site. In fact, your words are the only reason that I ever come back here. Your tenacity, bravery, and humble intelligence have never failed to humble me. as do all of you who have the bravery to try and deal with this and also help others.
I hope that your neurologist comes up with the goods in terms of the Cladribine.
You have offered those of us with secondary progressive MS a ray of hope. If anyone deserves it, it’s you. Please also tell us what you know about this medicine
and whether you feel that it will help you.
We would be interested to hear your judicious and informed, intelligent counsel.
If anyone was a poster boy for not giving up and trying to help others -it is stumbler.
I hope everyone else agrees with me.
Happy New Year special stumbler and his wonderful Family, (who I’m sure he will credit for his self less humility).
God bless you all – keep the Faith and never, never, never give up✨?❤️☮️✨
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