Selma Blair – Another MS Warrior

95 HSCT in the news

I am a teacher and finally finished work on Friday for the five week Summer holiday. Some of my colleagues have plans for travel to exciting places, but I’m mostly staying home and trying to save money. The weather isn’t exactly conducive to having fun, also, I can’t walk with an umbrella and my raincoat has a broken zip, but I’ll try my best!

I should have an appointment with the team in Sheffield in a couple of weeks and will find out if there is any chance of them treating me here. If that leads to nothing, I want to get myself to the clinic in Russia as soon as I can. This uncertainty makes life feel a bit in limbo and it’s difficult to make plans. Over the last few weeks I have wondered about trying to book a cheap last minute holiday while I’m off work, but it feels wrong to be spending money on such things until I know which direction I’m going. Not that I have much spare money – reducing my working hours by a fifth has obviously reduced my income by a fifth, so whilst that’s better for my health, it’s a lot worse for my bank balance! There is no system to support those with a disability or health problems who can still work, but can’t manage full time hours, although I have just found that I may be eligible for PIP (Personal Independence Payment) so will start the gruelling assessment process while I’m off work.

So, to HSCT in the news …

The profile of HSCT is rising all the time and it will soon be very difficult for neurologists to dismiss it, as some do now. I was delighted to hear this bit of news recently – the team in Sheffield have recently won the NHS Futures Parliamentary Award for their pioneering work on stem cells transplant (HSCT) to treat Multiple Sclerosis. Click here for a full report …

Pioneering Multiple Sclerosis Stem Cell team win national NHS future Parliamentary Award

Congratulations Professor Sharrack, Professor Snowden and the rest of the Transplant team 🏆🥂🥇

I have written before, about the Hollywood actress, Selma Blair, who was diagnosed with MS a couple of years ago and has spoken openly in the media and via her Instagram account about her struggles with the disease, coming to terms with the diagnosis, the impact on her life and her search for the best treatment. For the last few weeks, the content of Selma’s online activity has led many of us to believe that she was undergoing HSCT with Dr Burt in Chicago, and it turns out we were right!

Selma is in the early stages of recovery at the moment and I wish her well. Once she’s strong enough, I’m sure she will become a truly fabulous HSCT advocate 💪🏻

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As you know, we have paused our fundraising efforts for the time being, until we know whether further funds are needed, however, there is still some activity in the back ground and I was delighted to receive a surprise donation of £75 this week. The money came from a collection box in the Cash and Carry at Stephensons, so I’d like to say a big thank you to all their customers and staff.

The Cash and Carry is well worth a visit, even for those of us not in the catering industry …many kitchen related bargains to be had! Find out more here …

Stephensons

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In my last blog post, I listed 9 MRI scan tips and was struggling to come up with another to round it up to a perfect 10. Over a week later and I’ve thought of one!

10. DON’T start to cry when you are in the machine! You can’t move your head or raise your hand to your face, so the tears form two perfect puddles over your eyes …not comfortable at all and plays havoc with your mascara.

93 This is what keeps me awake at night …

I have spoken before about the published criteria for being considered for HSCT in the UK on the NHS. They are as follows:

Diagnosis of MS made by a neurologist
Able to walk, needing at most bilateral assistance to walk 20m without resting
In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
New MRI activity within last 12 months

Previously, I met all of these apart from number 3. More recently, they have relaxed that particular criterion in some cases and Professor Sharrack seemed to agree with my argument that as an older MSer, it would be counterproductive to use valuable time trying out various drug regimes. Some experts are also of the view that HSCT is more likely to be successful in patients who have not already had their immune systems compromised through the impact of the stronger MS drugs.

By the time of my meeting with Professor Sharrack in June of this year, criterion 3 was no longer being strictly applied, but as over 12 months had passed since my last MRI, I found that I no longer met criterion 4!

So, in May 2018, I met all the criteria except number 3.
And in June 2019, I met all the criteria except number 4.

This is what is keeping me awake at night! I have a nervous wait to see what the MRI shows. I have certainly had worsening of symptoms during this time, but this can be caused by new disease activity or by the body struggling to cope with previous damage to the brain and spinal cord (known as secondary progression).

It is Professor Sharrack’s view that HSCT is not effective for those with secondary progression, although international data suggests otherwise. I am a member of various HSCT support groups and have had conversations and read the blogs of numerous people with Secondary Progressive MS, who have had success in halting the disease using HSCT.

Another confusing factor is that it is just 2 years since my diagnosis and 7 years since my first symptoms and typical disease evolution is for Relapsing MS to become progressive after about 15 years. Clearly my understanding of MS is still at amateur level!

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There has been a bit of excitement in the world of HSCT during recent weeks as fellow MSer, Selma Blair appears to be having HSCT. Selma has been very open about her diagnosis, her struggles with the disease and her search for treatment and support. She is, quite understandably, being less open about her ongoing treatment but has mentioned she is being treated by Dr Burt (HSCT guru) in Chicago. I’m really hoping we see a happy ending to this story at some point in the future.

Back in April, I told you that Gogglebox star and fellow MSer, Scott McCormick was receiving HSCT at Hammersmith Hospital in London. Scott has been safely home with his family for a few weeks now, is doing well, sleeping lots and keeping us amused with his occasional MS:UK videos and twitter posts! As you can see, he has also had to embrace quite drastic change in his appearance!

Scott and his wife, Georgia are also very encouraging of other MSers considering HSCT, which is very much appreciated.

76 Slow recovery

Apologies for the radio silence …it’s been a tough old week for me! I really did overdo it last weekend …on my feet for far too long, too much lifting and carrying and staying up late (for me anyway!). I have felt overwhelmed with fatigue and ataxia** ever since and have been concentrating on work and resting.

** Ataxia is the medical term for lack of voluntary coordination of muscle movements. In MS this can be seen as clumsiness, unsteady gait, impaired eye and limb movements, and speech problems. In some cases, the lack of coordination is seen as tremor.

Read more about Ataxia here …MS Trust – Ataxia

Other than that, it has been a really good week. I’m still feeling thrilled at the amount of money raised at our evening event and still receiving donations from people who couldn’t make it …thank you again everyone.

I was planning on taking a step back from fundraising over the next few weeks as I have a lot to do to get ready for my trip to Russia, but I’ve been contacted by a few people with amazing offers of help …

🧝🏽‍♀️ My fabulous friend, Beth, has recently learnt the art of Tarot reading, so we are planning a small evening of readings, drinks and nibbles sometime soon. Thank you Beth xx

☕️ A local coffee shop / bar has offered to host an event …more info to follow once we have it.

🍲 A Chinese restaurant has been in touch to offer a fundraising evening. We are at the very beginning of planning this one, but hopefully another fun evening coming soon!

In addition, we have a few fundraisers already in the pipeline …

Glenda is taking part in a sponsored 10K Nordic Walk in April.

Niamh and a team of workmates from Stephenson’s are taking part in the Manchester Gung Ho inflatable 5K at Heaton Park on 6th April.

Alex, Connor, Gleaves and Carl are still working on their mammoth 100K (58 miles) Peak District Mountain Bike challenge.

Cal’s head and chin shave is coming soon!

I am planning to pay for my treatment before we fall off the Brexit cliff on 29th March, so will be borrowing the outstanding amount (and will continue to fundraisers when I’m well enough).

In other news, I have started the process of arranging Visas for myself and Karen this week …it’s really happening folks! 🇷🇺

I didn’t want to finish this post without acknowledging a big event in the MS world that took place this week. As you maybe aware, Hollywood star, Selma Blair was diagnosed with Multiple Sclerosis last Summer. This week, she rocked on the red carpet for the Vanity Fair Oscars afterparty, with a custom made cane, looking beautiful, fierce, vulnerable and so much more.

She has also given a TV interview, despite being in the middle of an MS relapse affecting her speech.

Selma speaks openly and honestly about her MS on her Instagram page and has also had an interview published in Vanity Fair.

Thank you Selma for not hiding away and for your honesty in sharing the ups and downs of living with MS. There is much happiness to share too and I’m glad that people are getting to see that.

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