Vicky

74 A few thank yous

With just one day to go until our fundraising evening, it’s time for me to thank a few people. It’s been really hard work to put this event together and in particular, to do so with minimal expenditure. We have had so much amazing support and I am truly blessed to have so many kind people in my life.

I’d like to thank the following for their amazing generosity…

McCann Manchester for letting us use their fabulous venue. A special thank you to Joe for arranging this for us.

Sharon from Spoilt for Choice, Cheshire for decorating the room.

Dave Gilmore from David Gilmore Design for all his hard work with the tickets, slide show and various other graphics.

Stephenson’s Catering Equipment, who have been supportive in so many ways, including providing supplies for the evening.

Swan Brewery for providing all the beer and lots of other help and ideas.

Heather and Nick Chick, chefs extraordinaire, for preparing the food.

Our wonderful musicians …

Ashleigh

Dan and Chris

Everyone who has donated raffle prizes. We have received so many lovely items and we are touched by your kindness. The following businesses have also kindly donated …

Essence Hair Studio, Heaton Chapel (find them on Facebook and Instagram)

Seed Beauty, Edgeley (find them on Facebook and Instagram)

Droylsden Subaqua Club

The Vintage Village, Stockport

Inspire Travel

The Bun & Bones Club, Hazel Grove (find them on Facebook).

Many friends and family have pulled together to help get things in place, but I’d like to give special thanks to Connor, Niamh and Sophie who have given up a lot of their time to take the pressure off me and make sure everything is in place for tomorrow. They really have been amazing! Also, thank you to Glenda who has travelled over from Germany and to Jimmy, Gill, Anna and Zeb who have come up from Herefordshire for the weekend …your help and support is very much appreciated.

Lastly, thank you to everyone who has bought a ticket and also to the people who are unable to come but have made a donation.

See you there! ????

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73 Three days to go!

The last couple of days have seen much activity as we prepare for our evening fundraising event this Saturday. I thought I was quite an organised person, but even with multiple lists coming out of my ears, it all feels a bit manic!

Niamh has spent this evening sorting out the raffle prizes, while I made lists for a seating plan, further stuff to buy, timings for the night, jobs still to be done and people still to contact.

We have money in envelopes and scribbled notes on bits of paper all over the place.

My friends and family have been an amazing support in getting the event organised and it finally feels that everything is coming together at last. I’m so pleased that my brother and his family will be coming up to support the event and my sister is flying in from Germany …can’t wait to see them all.

Our ticket sales have exceeded expectations, which is a huge relief. We still have a few left, so do let us know if you’d like some. We also aim to have some on the door for any last minute guests.

Some useful information …M

? The address for the event is Bonis Hall, Bonis Hall Lane, Prestbury, Macclesfield SK10 4EF.

? Start time is 6.30 …we went for an early start as we thought it would suit those bringing children (please let us know if you are, so we have a rough idea of numbers).

? There is plenty of parking and we have been given permission for cars to remain there overnight, if you wish to get a taxi home and come back for your car the next day. (Cars left at owners’ risk).

? As a rough guide, the cost of an Uber from Bonis Hall to Hazel Grove is £10.

? There will be a well stocked bar selling Swan beer, lager, cider, wine, Prosecco, gin, vodka, Pimms and a range of soft drinks.

? Payment for drinks can be made by cash or card (there will be a 20p charge for each card transaction).

? We will be serving a curry supper (vegetarian / gluten free option available too).

? Raffle tickets will be available to buy on the night.

? We have a couple of live performers who are kindly giving their time for free (thank you so much Ashleigh, Dan and Chris).

???? I hope everyone has a great night and look forward to seeing you all there xx

72 TLAs (Three Letter Acronyms)

I work for the VST as a TLC alongside some ESWs. We work with LAC (or CLA) and we are always ready to provide a quick response to NIC. I have particular responsibility for EY LAC and we have regular contact with professionals from CSC, SEN and BSS. Acronyms are everywhere!

The world of MS has them too, although most are FLA! I thought I’d share a post about some of the acronyms and vocabulary used in MS.

MS – Multiple Sclerosis

CIS – Clinically Isolated Syndrome: A single attack (or “Sclerosis”). Many with MS are diagnosed with this following their first attack or relapse. For some reason, I was initially diagnosed with two episodes of CIS (which seems somewhat contradictory to the meaning of the word “isolated”!).

RRMS – Relapsing Remitting Multiple Sclerosis: MS which is characterised by attacks or relapses alternating with periods of stability. Some neurologists argue that! with MS, there really is no period of remission, therefore using the word “Remitting” is misleading. I am currently recorded as having RRMS.

RMS – Relapsing MS: Being used by some neurologists instead of RRMS

PPMS – Primary Progressive MS: a presentation of MS characterised by continuous progression, with no relapses or periods of remission. 10-15% of new diagnoses of MS are of PPMS.

SPMS – Secondary Progressive MS: around 50-80% of those initially diagnosed with RRMS will become secondary progressive at a later stage. I recently asked my neurologist if I was secondary progressive and he replied “well, you’re certainly on your way there”.

https://youtu.be/CgQfI0ZFvoo

MRI – Magnetic Resonance Imaging: used to view the health of the brain and spinal cord to aid diagnosis and monitor progression of MS.

DMT / DMD – Disease Modifying Therapy / Disease Modifying Drug (These terms seem to be used interchangeably so I assume they have the same meaning)

NEDA – No Evidence of Disease Activity (what we’re all aiming for!)

HSCT – Haematopoietic Stem Cell Transplant

AHSCT – Autologous Haematopoietic Stem Cell Transplant: an Autologous Transplant is one in which the recipient’s own tissues are returned to the body. Allogenic describes transplants where tissue is donated by another. Allogenic Stem Cell Transplant is considered far too risky as a treatment for MS.

CNS – Central Nervous System: the brain and spinal cord

CSF – Cerebral Spinal Fluid: This is the fluid that surrounds the brain and spinal cord. CSF is extracted during a lumbar puncture (or spinal tap) and can be tested and examined in a number of ways. Most people diagnosed with MS have “Oligoclonal Bands” present in the CSF at a higher level than in the blood. I had a lumbar puncture in 2017 which identified the presence of oligoclonal bands and confirmed my MS diagnosis.

PwMS – People with MS

NICE – National Institute for Health and Care Excellence

EBV – Epstein-Barr Virus: A common virus that causes glandular fever. I have included this as there is growing evidence that exposure to EBV may be a contributing factor to developing Ms for some.

EDSS – Expanded Disability scaled Score: Used to measure disability in MS. A recent neurologist letter records my EDSS as 6, however I feel it is nearer 5.

TTFN xx

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71 I can see!

This week I collected my new glasses from the opticians …they are amazing …I can see!

I first wore glasses as a small child until the age of around 12. This was for a squint and a tendency to being long sighted. I spent quite a lot of time having tests, wearing patches and visiting the eye hospital. After that, I think I last had my eyes tested when I was about 20!

Over the last few years I’ve been buying off the peg reading glasses and have reached the point where I can’t manage without them! Primark and Aldi have provided my optical services and I haven’t spent more that four quid for a pair!

A couple of months ago, I was advised by an occupational therapist to get my eyes properly tested. Apparently this is very important at my advanced years and even more so as I have MS!

Optic neuritis (inflammation of the optic nerve) is a very common MS symptom, in fact it can often be the first symptom MSers experience. It made sense to get my eyes checked.

I decided to go to a qualified medical optometrist, rather than a high street optician and was glad I did. I am now the proud owner of not one, but two, new pairs of glasses!

It turns out I need one pair for distance and one for reading (I can’t have varifocals because of my balance issues) so I’m now nearly £400 worse off. But things are now much clearer …I can see to read and can see the computer screen at work and (as the optometrist pointed out) with my distance glasses on for driving I “can see the whites of their eyes when I hit ‘em!”.

The optometrist was also able to check the health of my eyes and could see that my optic nerve is in good shape and free from neuritis.

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Life feels very hectic at the moment. There’s so much to do to be ready for our evening fundraising event and I’m also starting to plan for my trip to Russia. The clinic is working on my contract and other paperwork and I’m in touch with a visa agency and starting to look at flights.

The other big development is that I have made some decisions about my travel to and from Moscow. I’m going to make the outward journey on my own. I’m not worried about this and the hospital will arrange to meet me at the other end. I’m expecting the return journey to be a little more tricky as I could be feeling quite weak and tired and I need to do all I can to avoid infections. My lovely friend, Karen, has offered to travel over so that she can make the return journey with me. I’m so grateful for this and now feel the journey home is something I don’t need to worry about. Thank you Karen xx

There are still tickets left for our evening event …get them while you can!

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70 How to fall safely

Obviously the best bet is not to fall at all, but sometimes it just happens! I experience a lot of near falls, stumbles, trips and bumping into things and sometimes end up with a few bruises.

I take a few precautions to keep as safe as I can – using my stick, holding on to furniture, linking arms with whoever I’m walking with and staying focussed on what my feet are doing (even when I can’t really feel them!). Despite this, I have still managed a few spectacular falls.

Recently I’ve been reading advice in “How to fall safely”. The general advice is …

Protect your head and face
Bend your arms and legs and try to “stay loose”
Try to land on a fleshy part of the body (rather than on bones or joints)
Roll with the momentum of the fall

I think I may have to practice, as most of my falls involve landing on my knees and hands …and really hurt ☹️

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I have just added the following to the “Where to begin” page. I’m aware that I have quite a few new readers so thought it was appropriate to update it …

31st January 2019

Its’s been almost 6 months since I wrote this first post. A lot has changed since then , so I though I’d add an update to explain …

Since August, my MS has continued to progress with no major relapses. I now use a walking stick daily and have been issued with a Blue Badge and work place parking permit. I have also reduced my hours at work in order to cope with my ever increasing fatigue.

My neurologist has left the country! He has returned to his home country of Malta and I have been allocated a new one. He has offered me Copaxone but I have declined.

I have decided that I want to go for the most effective treatment for MS currently available …HSCT (Haematopoietic Stem Cell Transplant). Unfortunately this isn’t widely available in the UK and I don’t quite meet the very tight criteria for treatment on the NHS. This could possibly change in the next few years but I don’t think I can wait that long.

After much research and discussion with my family, I have decided to go abroad for treatment. I am booked to go to a clinic in Moscow on 23rd April. The clinic is experienced in treating MS patients and has an excellent record in terms of successful outcomes and patient safety.

The cost of the treatment, flights and visas is around £40K. We are working hard to raise the funds and will borrow if we have to so that I can make that date in April.

There are lots of posts in this blog which explain this in more detail, so feel free to browse and search.

Thanks again for reading

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69 Friends

I just wanted to send a message to friends everywhere, to apologise for being such a rubbish friend these days!

Although I am working slightly fewer hours these days, I still find that work takes up a lot of my time and energy (spoons!). Whatever I have left is spent stressing over fundraising! If the truth be known, I really don’t like the situation I find myself in and hate having to ask people for money. It’s all so time consuming, stressful and a little humiliating. I tend to be quite open with friends and family, but don’t share my whole life with everyone. Yet here I am sharing my thoughts and information on my life and my health with anyone who wants to read it!

With all my physical and emotional energy going in to fundraising, worrying about fundraising and trying to win the lottery, I know I am neglecting the people around me. I’m sorry for that.

If I owe you a text or phone call or an email, or a coffee or a night out, I hope you can bear with me while I’m so distracted with everything else. Please keep in touch xx

All of this has made me realise that life is going to be very different for me for the next 6 months or so. I’m planning to work hard at the fundraising until our evening do on 23rd February. At that point, I’ll try to borrow whatever is outstanding and get my treatment paid for. Then I’ll have 2 months to plan and prepare!

My trip to Russia will take a month and I’ll need to take things very slowly when I get back. I’m hoping normal service will resume by Autumn …that really does sound a long way away. I know I will have some wobbles on this journey and there’s a lot I can’t even think about yet, but at the moment, I’m feeling positive and determined, which will do for now!

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Event tickets £10 each

Saturday 23rd February … Bonis Hall, Prestbury

Raffle tickets 50p each

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68 Tickets, ticket, tickets!

The tickets for our fundraising event are finally ready!

I’d like to thank Dave Gilmore for designing and printing them and Niamh for cutting and perforating them.

Tickets are £10 each, children under 10 are free (please let us know if you are planning to bring children so we have an idea of numbers).

The evening will start at 6.30pm and will go on until midnight. We have a few live music acts lined up – dancing and singing along most welcome! There will be a bar, selling Swan Brewery beer and various other refreshments.

We have a few items that we plan to auction – this will begin online in a couple of weeks and end during the evening (more info to follow).

Raffle tickets are also now for sale.

We have had lots of amazing raffle prizes donated, with new items coming in all the time. Raffle tickets are 50p each.

If you have anything you could donate or know of any shops or services who may be willing to provide a voucher, we’d love to receive them …the more prizes we have, the more raffle tickets we’ll sell and the closer we’ll get to our fundraising target.

All business donors will be mentioned in this blog, on our social media pages and on the night.

If you would like to see more of Dave’s fabulous work (including the Manchester bee paper straw design) please see his website …

davegilmoredesign.com

You can find out more about Swan Brewery here …

swanbrewery.co.uk

If you would like to make a donation to our fundraising account, please do so here …

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Please spread the word!

Thank you again for all your support ?

67 HSCT trial outcome …it’s good news!

This has been an exciting week in the world of MS and HSCT, as the final analysis of the MIST trial has been published in the Journal of American Medical Association (JAMA).

The trial compared the effectiveness of HSCT against a control group of patients who were given conventional Disease Modifying Therapies. The trial included patients treated at 4 centres across the world – Chicago, Uppsala (Sweden), Sheffield and São Paulo (Brazil).

The findings of the trial were that HSCT was more effective in terms of halting disease progression than any DMT.

This visual summarises the findings …

Here is a link to the published report …

Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis : A Randomized Clinical Trial

As you can imagine, this has caused a huge ripple in the medical world and it is now estimated by some that HSCT as a treatment for MS could be FDA (US Food and Drug Administration) approved within 2 years.

Here’s CNN’S take on it …

Stem cell therapy for relapsing MS proves effective and safe, study finds

“HSCT proved to be the more effective treatment: Of 55 patients receiving HSCT, only three patients showed disease progression at one year, the study showed. Yet, 34 of 55 patients in the disease-modifying therapy group showed disease progression at one year. Disease progression was measured using the Expanded Disability Status Scale, a method for monitoring changes in symptoms over time.

Among the HSCT group, the proportion of patients with disease progression was (roughly) 2% up to two years, 5% at three years, and 10% at 4 and 5 years. Meanwhile, the proportion of patients with no evidence of disease — defined as no progression, no relapses, and no new or enlarging lesions on MRI scans — was (nearly) 98% at one year, 93% at two years, 90% at three years, and 78% at four and five years.”

I am more determined than ever to get to Russia and have HSCT …it feels good to be part of this MS revolution.

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Since writing my previous post recording my current symptoms, I keep thinking of one’s I’ve left out. I’m going to add them to the list in italics.

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66 Current symptoms

I have been advised to record an audit of my current symptoms, so here it is! I’m going to use the symptom list from the NHS website as headings:

Fatigue

I experience fatigue often. I still manage to work 4 days per week but find this exhausting. I am no longer able to do everything I want to do and I need to ration my energy and allocate recovery time. I avoid doing anything after work and have had to cancel several social commitments.

Vision Problems

Thankfully I don’t have any MS related vision problems.

Numbness and Tingling

This is an everyday problem for me, in fact I haven’t had a day without numbness and tingling for over 2 years. I get this in both feet and legs and sometimes in my left hand and it is noticeably worse when I’m cold. My left foot in particular feels like a cold, dead, heavy weight on the end of my leg!

Muscle Spasms, Stiffness and Weakness

This is also an everyday problem for me. My legs are stiff and painful, especially when I get up in the morning or after sitting for a while. Basically, when I stand up, I’m never quite sure what my legs are going to do! I sometimes have spasms and twitching in my left leg. I know I am much weaker than I used to be (but this is partly due to me being less active). I have noticeable weakness in one side of my left hand .

Mobility Problems

There are lots of things that contribute to my mobility problems – issues with balance, spasticity (stiffness), weakness, numbness and lacking confidence all contribute. I feel much safer when using a walking stick, especially on uneven or sloping surfaces. My EDSS (expanded Disability Status Scale) score was assessed as 4 by my neurologist in June 17 and as 6 in November 2018. It was just 1.5 twelve months prior to this. I’m not sure that I agree it is 6 now as although I require assistance for walking, I can still walk on flat uneven surfaces unaided.

Pain

I have some nerve pain on the left side of my body. During my last relapse, this was particularly painful (I’m told it feels like shingles pain) – thankfully it has faded to manageable levels, though has never disappeared. The spasticity in my legs is painful at times.

Problems with Thinking, Learning and Planning

In the MS world this is known as Cognitive Fog or Brain Fog. I know I have this, although it is very hard to assess or measure.

Depression and Anxiety

It is very difficult to NOT be depressed and anxious when you have MS!

Bladder Problems

Thankfully I don’t have bladder problems. During my last relapse I had a common problem experienced by people with MS where I knew I needed to go but couldn’t! This is caused by damage to the spinal cord in the area that leads to the bladder, so the message from the brain doesn’t get through. Luckily this wasn’t permanent, but it remains one of the things I most worry about as my MS progresses.

Bowel Problems

Thankfully I don’t have bowel problems.

Speech and Swallowing Problems

I don’t have swallowing problems and my speech problems are limited to sometimes being unable to recall a word for something (linked to brain fog rather than a speech problem). About 4 years ago I had a period of slight slurring and was aware this was linked to the way the left side of my face and mouth moved.

Balance

For some reason balance isn’t on the NHS list, yet it is a very common problem for people with MS. My balance has got steadily worse over the last 18 months.

Additional symptoms added 18.01.19.

65 Let people in; they can handle it

I read this interesting personal account today and realised I have the same issue as Trish – I am so determined to remain independent and self sufficient that I tend to hide my MS struggles and don’t often ask for help.

MS Lesson Learned: ‘Let People In; They Can Handle It’

Yesterday I met up with three dear friends who I’ve known for years and would trust with my life – we can (and do) talk about anything and everything, we’ve supported each other through all sorts of ups and downs, over many years, yet still I minimise my struggles.

Thinking about this, I realise it’s because I don’t want the people in my life to see me differently …even though I am different now. Maybe I am struggling to accept that myself?

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I am very happy to tell you that we finally have a plan in place for our evening fundraising event on Saturday 23rd February. Tickets are being designed and printed as we speak and will be available to buy very soon. Tickets are £10 and will be available soon.

As mentioned before, the venue is Bonis Hall, the home of McCann Manchester, who have kindly agreed to let us use their Bistro area for our event. Special thanks to Joe for setting this up for us.

The event will start at 6.30pm and we have an evening of music, food, drink and fun planned. Children are welcome too (please let us know if you are bringing children).

We are hoping this will be a successful fundraiser for us and a fun night for all.

We will be selling raffle tickets before and on the night and already have a fantastic array of prizes. If you have anything you could donate as a prize, please do get in touch. Unwanted Christmas presents, vouchers for services or anything else you can think of!

We still have some other fundraising events coming up …Callum’s head and chin shave, Team Stephenson’s are taking part in the Gung Ho Infaltable 5K, Glenda will be taking part in a Nordic walking event and the lads will be completing their Mountain Bike Challenge

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