I wish I knew you were coming through. My neurologist, who is at the Barlo Center at St. Mike's in Toronto is a big fan of yours, I bet she could have snuck me in lol. That aside I recently had tests done and it really looks like my EBV is currently active. I'm curious as to what antiviral is the most logical to 'tamp' down the EBV. I swear my symptoms are more noticeable when the EBV revs up, so to speak. I see valacyclovir and acyclovir get prescribed but are here better ones?
Pleased to hear you had a rewarding time in Canada and it is good to know that you’re still globe-trotting to share your knowledge and expertise.
I am going to have to be a stuck record and say again that as a 61 year old who was diagnosed with late onset RRMS (10yrs ago come Nov) I am more delighted than I can say for having been treated with Alem and for remaining free of evidence of progress or comorbidities.
I know there was a study published in Neurology in June 2018 that concluded the incidence of LOMS had more than doubled in women, but only showed a modest increase in men. Perhaps this needs more attention than it currently receives.
Sincerely hope you make a full recovery from your treatment for melanoma.
Praying the results of your melanoma excision are the best they can be for you Professor.
I’ll take a look at your notes, maybe. Although I trust your contribution was in our best interest and that you listened with an open mind to other opinions and theories.
As an Australian, I assumed when you referred to toads that you meant Cane Toads - disgusting creatures that they are. I much prefer the 'toad' of work, as galling as it can be at times! (And I did enjoy the poem.)
Commiserations on the melanoma! I had my first one 20 years ago. Grade1 borderline 2, big excision and 5 lymph nodes removed too. The ten days waiting for the pathology were hard, but negative results on the lymph nodes meant peace of mind. I had another small one removed recently so I'm now on 6-monthly checks. Life in Australia! But tough luck to get one in the UK :(
As always, much to read and inwardly digest. I’m long since retired but a few of us had a saying which sort of chimes with The Toads: ‘ Let’s just get on with this before the bean counters move in’. Bean counters being those who asked for pages of written risk assessments, arrangements for financial monitoring, demonstration of how it related to the strategic plan etc, etc.
Sorry to hear about your melanoma ( my wife is waiting to hear what the plan is for treating her endometrial cancer and you are so right : waiting for biopsy results and now treatment regime weighs heavily on mind and emotions. Sort of puts life on hold for a while). My best wishes to you
Thank you for this wonderful presentation. (Of course they want to hear you speak!) I love the poem and I am always grateful for your abiding emphasis that MS is one disease. I am quite hopeful for the future, though we who are aging with MS, smouldering with NEID and SAW status, can be overwhelmed by symptom management and the inevitable co-morbidities. I am recovering painfully from a surgery that was the result of a complete surprise (and I mean a whammy!) involving the failure of the lower bowel. After some research, I found that this occurrence is not at all unusual in older p/with MS. You, Prof G, have been almost the sole source of frank discussion of bowel function in p/wMS. (I realize I’ve veered off the path here, but MS and aging is my point. Many surprises! Personally, I refuse to lose my sense of humor.. we who are older aren’t skiing and riding mountain bikes anymore; we are busy with the preservation of our brains.) As always, I appreciate your dedication to us. You are in my thoughts while you await biopsy results.🌷
I’ve read that Canada has one of the highest rates of MS. Have Canadian researchers made any headway in understanding the reasons / factors behind this?
Canada appears to punch above its weight in producing highly regarded MS researchers eg Bar-Or, Freedman, Oh… How aligned are the Canadian MS researchers with your views on the role/s of EBV and the concept of smouldering MS?
What did your hosts regard as the next big breakthrough in MS therapies? BTK inhibitors? Car T cells? Something else?
What happened to the BMT trial under Professor Freedman? It got a lot of publicity some years ago and there were claims that it could shut down MS?
Did you meet up with Dom who is cycling across Canada?
Thanks for the open mind and the generosity with your work, knowledge, experience and ideas.
I wish I knew you were coming through. My neurologist, who is at the Barlo Center at St. Mike's in Toronto is a big fan of yours, I bet she could have snuck me in lol. That aside I recently had tests done and it really looks like my EBV is currently active. I'm curious as to what antiviral is the most logical to 'tamp' down the EBV. I swear my symptoms are more noticeable when the EBV revs up, so to speak. I see valacyclovir and acyclovir get prescribed but are here better ones?
Did my final degree dissertation on Larkin, what a treat to see this in your newsletter and the sentiment is bang on!
To Clifton Jackson, Sr., the Jazz Man
The Gift of Words
Today I was called an angel because my poems spoke−
images of human suffering and glory
sketched in charcoal and pastel upon these pages,
a gift from God sent, not through me, so much as in me,
for I am the gift.
I rushed past his words with a quick thanks,
changed the topic, grateful to feel humbled,
uncomfortable with the responsibility implicit in the thought.
Words carrying such power must be given carefully,
so that even when they pull you to the brink of human despair,
teetering at the precipice, vertigo calling you to fall willingly into the abyss,
the words return to build the rails that keep you safe;
let you lean against their black chill, considering the depths,
but do not ask you to dive into the misted sadness.
Words of hope call out your name from behind you;
turning, you can see movement through the fog −
humanity with all its flaws beckons.
Take one small step away from the cliff’s edge, the distance will be closed;
you will be enfolded in a loving embrace,
winds rising to expose the clear blue sky all around you.
If my words blow away the mist so you can see your way back to us,
you have cleared a path to me, and you are the angel gifted to me in
a simple brown paper bag with my name written boldly on the side.
Kit Minden
Pleased to hear you had a rewarding time in Canada and it is good to know that you’re still globe-trotting to share your knowledge and expertise.
I am going to have to be a stuck record and say again that as a 61 year old who was diagnosed with late onset RRMS (10yrs ago come Nov) I am more delighted than I can say for having been treated with Alem and for remaining free of evidence of progress or comorbidities.
I know there was a study published in Neurology in June 2018 that concluded the incidence of LOMS had more than doubled in women, but only showed a modest increase in men. Perhaps this needs more attention than it currently receives.
Sincerely hope you make a full recovery from your treatment for melanoma.
Thank you so much
Your slides are well known by almost neurologists ..l
Multiple Sclerosis Acrostic
M any years have passed since I first felt your presence
U nderneath my skin, twisting and churning, you warped my sinews,
L igaments tore and bent until the nerves, delicate strands of silk,
T angled into paths no currier could hope to follow.
I hunted you among the eskers, wormy mounds you left behind,
P arsing your gravelly remnants, as if by labelling your structure I could
L earn enough about you to etch your true name upon your brass nameplate,
E limteainate you from my life before you did more damage.
S lowly, months pass and I drive you back,
C rashing into me at times, my body revolts at change,
L imits set upon me by you destroying conduits,
E dging out what once pulsed heart’s blood
R ed, glowing strength, joy; air was all I needed. Life
O ffered feelings—sun’s warmth, wind’s chill, love’s cheer;
S inging through my soul, giving my life rhythm.
I worked, ran, danced, sang, made love, held my child, my heart.
S hrouds of despair mute my world, color me gray.
Kit Minden
L ast time I looked at my dreams, they were solid, intact;
Y ou shared them with me, the stars in my universe shifted
M aking room for your constellations, astral shimmering on midnight blue
E very day idyllic, every night jubilant feasting, juice running down our chins,
D aring Fate, we cut loose the bonds of gravity; Thor laughed, donned his
I ron gloves, heaved Mjolnir, his hammer hurled its wild-fire lightning bolt,
S mote us, boiled our blood while we slept, singing muscle, sinew,
E xterminating, enervating us; replicating to slip, slide, slither through
A lleyways, open and unarmed, never suspecting attack
S triking our child, exquisite consequence of love; dreams dissipate, clouds
E nshroud the sky; even the moon is veiled.
© Kit Minden
Praying the results of your melanoma excision are the best they can be for you Professor.
I’ll take a look at your notes, maybe. Although I trust your contribution was in our best interest and that you listened with an open mind to other opinions and theories.
Wishing you good health
As an Australian, I assumed when you referred to toads that you meant Cane Toads - disgusting creatures that they are. I much prefer the 'toad' of work, as galling as it can be at times! (And I did enjoy the poem.)
Commiserations on the melanoma! I had my first one 20 years ago. Grade1 borderline 2, big excision and 5 lymph nodes removed too. The ten days waiting for the pathology were hard, but negative results on the lymph nodes meant peace of mind. I had another small one removed recently so I'm now on 6-monthly checks. Life in Australia! But tough luck to get one in the UK :(
Thanks for your work.
As always, much to read and inwardly digest. I’m long since retired but a few of us had a saying which sort of chimes with The Toads: ‘ Let’s just get on with this before the bean counters move in’. Bean counters being those who asked for pages of written risk assessments, arrangements for financial monitoring, demonstration of how it related to the strategic plan etc, etc.
Sorry to hear about your melanoma ( my wife is waiting to hear what the plan is for treating her endometrial cancer and you are so right : waiting for biopsy results and now treatment regime weighs heavily on mind and emotions. Sort of puts life on hold for a while). My best wishes to you
Thank you for this wonderful presentation. (Of course they want to hear you speak!) I love the poem and I am always grateful for your abiding emphasis that MS is one disease. I am quite hopeful for the future, though we who are aging with MS, smouldering with NEID and SAW status, can be overwhelmed by symptom management and the inevitable co-morbidities. I am recovering painfully from a surgery that was the result of a complete surprise (and I mean a whammy!) involving the failure of the lower bowel. After some research, I found that this occurrence is not at all unusual in older p/with MS. You, Prof G, have been almost the sole source of frank discussion of bowel function in p/wMS. (I realize I’ve veered off the path here, but MS and aging is my point. Many surprises! Personally, I refuse to lose my sense of humor.. we who are older aren’t skiing and riding mountain bikes anymore; we are busy with the preservation of our brains.) As always, I appreciate your dedication to us. You are in my thoughts while you await biopsy results.🌷
Speaking of CAR-T, any chance you could comment on https://www.science.org/doi/10.1126/science.ads8473 ?
I’ve read that Canada has one of the highest rates of MS. Have Canadian researchers made any headway in understanding the reasons / factors behind this?
Canada appears to punch above its weight in producing highly regarded MS researchers eg Bar-Or, Freedman, Oh… How aligned are the Canadian MS researchers with your views on the role/s of EBV and the concept of smouldering MS?
What did your hosts regard as the next big breakthrough in MS therapies? BTK inhibitors? Car T cells? Something else?
What happened to the BMT trial under Professor Freedman? It got a lot of publicity some years ago and there were claims that it could shut down MS?
Did you meet up with Dom who is cycling across Canada?