The time has come for me to do something drastic about my weight.
A combination of fatigue, decreased mobility, thyroid problems and a bit of comfort eating, have caused me to gain a lot of weight over recent months. I have always struggled with my weight and have yo-yo dieted for most of my adult life. In the past, I could cut out snacks and be a bit careful for a few weeks and usually get things back under control, but this doesn’t seem to work these days. So, from Tuesday I will be on a supported weight loss plan, with a hope of being slimmer and healthier in a few months time.
On Wednesday, I had my first meeting with my 1:1 diet consultant, which included the dreaded weigh in. I have some scales at home but have been avoiding them for a while now, but my clothes have been feeling tighter and I knew I was in for some bad news. I am now the heaviest I have ever been and with a BMI of 30.8, am now classified as obese. I’m feeling pretty upset about this, but am planning to use this feeling to motivate me to stick to my new diet plan.
As you know, my HSCT treatment has been delayed until August. I am planning to use the extra time to lose weight and increase my fitness. Hopefully I’ll be in better shape by August, than I am now, which in turn, should have a positive impact on my recovery.
Alexandra Park, Edgeley 21.04.19
Isn’t it wonderful to see the sun shining? I am beginning to think my spirit animal must be a bear or some other animal that hibernates! I really am a different person when Spring arrives! I feel so much better mentally and energy levels are up too. Hopefully, this will all help with my plan to improve my fitness.
A few months ago, my GP referred me to a supported scheme at my local gym, but unfortunately my fatigue and pain levels at the time meant I had to defer this. With the arrival of winter, swimming and aquafit became too challenging too. I am aiming to get all this back on track too.
I am back at work on Tuesday after the Easter holidays and am feeling positive and ready to take on the challenges of the new term (I am really lucky and work term time only). I think the warmer weather, lighter evenings and time spent with family and friends over the last couple of weeks have improved my mood and energy levels. I am really grateful to all the wonderful people in my life …thank you everyone ❤️
Even though I’m having a bit of a break from fundraising, there has still been some activity in the background, which I thought I’d report back to you.
A couple of weeks ago, Bobby put on his sports gear and took part in his very first fun run. Thank you so much Bobby …we are all very proud of you and thankful for your contribution to our funds. We don’t have a total yet for Bobby’s fun run so if you feel like adding to his fundraising efforts, please donate via the link below and give Bobby a mention.
This morning, another group of athletes donned their running gear to take part in the Manchester Gung Ho 5K Challenge. Niamh, Becca, Tiah, Alex, Jordan, Duane and Matt are all part of the Stephenson’s team, who never fail to support our fundraising efforts.
Gung Ho is a 5K with a difference…the course involves running, climbing, jumping and sliding over various inflatables and other obstacles, with a bit of foam thrown in for good measure! The intrepid team had a great morning and managed to complete the course in around 40 minutes. I’m told it was great fun, but “much harder than we thought it would be”!
Well done all of you and thank you so much for your efforts 😊
We’ll have a total for the team soon, but in the meantime, if you’d like to sponsor them , please click on the link below and mention them in your comment.
Thank you to all the lovely people who have been in touch recently to check I’m ok. I must admit that the last few months have been hard and I’m mostly feeling quite relieved about delaying my trip to Russia for treatment. I think I am suffering from fundraising fatigue at the moment! …my team of helpers too. So I’m having a little bit of a break from it for now (although still selling things online) and hope to be back on track in a few week’s time.
As mentioned before, I am struggling a little with fatigue at the moment. This is a largely invisible symptom of MS, but experienced by many and is, in fact, the most common reason that pwMS find they have to give up work. I reduced my working hours to four days per week in January and apart from adjusting to the reduced income, I have found this to be a huge help.
Another symptom I am becoming more aware of is “brain fog”. Many MSers experience this and it’s something we all dread. Sometimes I struggle to find the word I am looking for and I’m aware of sometimes feeling, well, a bit foggy! I am very much aware that my ability to concentrate is not what it was. I have always been an avid reader but haven’t managed to read a book for a long time. This is partly because I’m busy and tired, but also because of poor concentration. I can’t tell you how much this saddens me – reading is everything – escapism, broadening the mind, gaining knowledge and understanding, sharing information, to name but a few. I so hope that my concentration returns once I’ve had HSCT, in fact, of all my symptoms, it’s the one that worries me the most.
A few years ago I gained a place on a Masters degree course at Manchester University. I very much believe in life long learning and think we are never to old to learn and achieve. I had to withdraw from the Masters course, as my MS took hold and know it would be beyond me now. Recently an opportunity to complete a post graduate qualification linked to the education of looked after children (children in care) arose at work – the old me would have jumped at this.
I’ve been trying to understand a little more about MS fatigue and brain fog and it seems that the cause of both is the efforts the brain is making to bypass areas of inflammation. We are blessed with brains that can adapt to small changes and work out new neural pathways in order to keep functioning. This uses a lot of energy and “brain power”, so the downside is brain fog and fatigue.
In my efforts to learn all I can about MS, I follow a number of fellow MSers and eminent neurologists online. In fact, I have learnt more by doing this than I have from my own neurologist and MS Nurse! One of those I follow is Dr Aaron Boster, Neuro-immunologist from Ohio, USA. Dr B (as many of his followers call him) believes that when someone has MS, their whole village has MS. The village is the family and friends of the person with the MS diagnosis. He believes that it is important for pwMS and other village members to learn about MS, as this can empower the MSer to “be the most awesome version of themselves they can possibly be”.
In one of his many MS education videos, Dr B describes a piece of research that involved asking people to perform a simple finger movement whilst their brains were scanned for activity.
For people without MS, one specific area of the brain lit up when the person moved their finger. When people with MS were scanned, it was found that several areas of their brains lit up when performing the same movement. This is thought to be due to the brain responding to areas of inflammation and damage, by “re-wiring” and using new areas of the brain in order to retain this functionality. If you imagine this happening multiple times, for all the complex movements and functions of the body, it is easy to see how hard the brain is working and to understand why fatigue and brain fog become an issue.
Two years ago, I didn’t have any visible disease activity in my brain, (on MRI) but my last three scans have shown new “white spots” (areas of disease activity) in my brain which have increased in size and number at each scan.
So, this why I need HSCT now! The disease activity in my brain is fairly new, so there is a greater chance of it being improved by HSCT. My hope is to stop the disease in its tracks and prevent further inflammation in my brain, let my neural pathways settle, stop feeling tired and foggy and start reading again! Maybe even manage some further study one day.
This is just a brief post to let you all know that we have made the difficult decision to delay my trip to Russia for HSCT.
There are several reasons why we came to this decision, amongst others is the fact that we are still quite a way short of of our fund raising total. We have a few events coming up, so hope to make the most of those and increase our total over the coming months.
It’s been a difficult week or so, talking this through with family and friends, but I think we have made the right decision. I have been in touch with the clinic and they have been very understanding – I hope to have a new date in place very soon.
I’ve been feeling a bit down about this for a day or two but feeling much brighter now. A bit of a bonus to this delay is that the timing now works really well with my job. I work as part of the team who support and promote the educational outcomes of children who are in care. As you can imagine, many of our children have experienced difficulties in their lives, which disadvantage them in education and in life in general. We do all we can to support these children to overcome this disadvantage and to reach their potential. As you can imagine, it is hard not to become involved and to care what happens to them. In education, the Summer term is really important, with phonics screening, SATs test, Functional Skills exams and GCSEs. I have several year 11s and it will be good to now see them through their exams and know what their plans are for next year. I’ve also started working with nursery age children and look forward to some of them moving on to primary school. It will be so good to see them all through to the end of the school year.
So, I’m doing my best to stay positive and focussed and also to remain patient!
I thought I’d write a post about my views on the treatment escalation model for Multiple Sclerosis widely used in the UK and throughout the world.
There are currently 13 Disease Modifying therapy drugs available in the UK and these are categorised by efficacy in to three groups: Moderately effective, More effective, Highly effective.
Potential side effects are more severe for the drugs with higher efficacy.
Discussing DMTs is always challenging as they all seem to have such complicated, hard to pronounce names and on top of this, most are known by two names – the generic drug name and the brand name. Bear with me if you can!
I have cobbled this together from the MS Trust website, to show the drugs in their three categories …
Most MSers are offered DMTs following an escalation model that looks a bit like this …
Patients are initially offered first line treatments, also described as “moderately effective” drugs. If they continue to progress or relapse, or are unable to manage side effects, they are then offered an alternative first line treatment. As these drugs can take many months to have an impact, each cycle of trying and failing can take up to a year or more.
Once first line treatments are deemed to have failed, patients are offered second line treatments and eventually third line or “highly effective” treatments.
By this time, several years may have passed and the MSer may have acquired significant permanent damage to their brain and spinal cord, resulting in long term disability and daily difficulties.
DMTs don’t treat symptoms, reduce pain or improve disability. In a sense they are an attempt to “future proof” and reduce further disease progression and damage to the central nervous system. Many MSers and indeed, neurologists are now asking questions about why patients can’t be offered HIGHLY EFFECTIVE treatments from the onset of the disease. Imagine being offered a treatment that has a higher likelihood of reducing relapses and progression and therefore reducing damage? It makes perfect sense to me.
For many, the most effective drugs will control their MS and allow them to live a normal life. For others, they will still have occasional breakthrough disease, which can then be addressed by one of the lower efficacy drugs.
Several high profile forward thinking neurologists are now actively promoting this de-escalation model as a more effective treatment plan than the current escalation model. Some are also including HSCT as a first line highly effective treatment.
Some neurologists are no longer offering first line treatments at all. These are mostly drugs developed 20-30 years ago which, at the time, where the only treatments available. Newer more effective drugs have become available but for some reason, these drugs with low efficacy are still being broadly offered. This doesn’t seem to happen in relation to treatments for other conditions. When newer, better treatments are developed, the older less effective treatments are relegated to history. This hasn’t happened with MS and it’s really not clear why.
Change is slow to come and all the time each person with MS is experiencing more damage to their brain and spinal cords. My own neurologist is stuck firmly to the escalation model, meaning it could be several years until I qualify for highly effective treatments …by which time I could be experiencing much worse symptoms, but may be too old to be considered for those treatments.
Many people with MS are frustrated with the system and the neurologists who care for us. The disease is like a ticking time bomb and we each have no idea how it may progress over time. Even those whose disease appears inactive, may be experiencing silent progression in the back ground. Leaving us to deteriorate whilst denying us the most effective treatments is devastating.
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Tomorrow, this gorgeous young man is taking part in a sponsored fun run to help raise funds for my treatment. Good luck Bobby …you are a superstar!
Well, my outward flight is booked and my homeward flight is identified and I’m ready to book once Glenda and I get our act together.
Initially my friend Karen was going to come to Russia towards the end of my treatment and travel home with me. Also, Glenda (my sister) was going to come over from Germany, around the same time, to look after me in my early days at home. We worked out that with flights, visas and hotels, getting Karen over there would cost over £1000. Then we had a brain wave and came up with an alternative plan. So my journey home will involve me doing the first leg on my own, as far as Frankfurt. Glenda will meet me there and travel the rest of the way home with me, then stay for a few more days.
I have also started the process of applying for a visa for Russia and will be going to the Russian Visa Centre in Manchester in a couple of weeks to have my finger prints taken!
Moscow here I come!
It’s taken so much hard work to get to this point, with lots of doubts and ups and downs on the way. I’m feeling positive and optimistic at this point. Just my contract to sign and the final funds to scrape together, then it’ll be time to make a packing list!
I am so thankful to everyone who has supported me on this journey. I really do have such an amazing family and wonderful friends. Everyone has been open minded and accepting when I explained my seemingly crazy plan to go to Russia for medical treatment. The haematologist in charge in Russia (Dr Fedorenko) very much believes that a positive attitude helps with recovery and with so many positive people around me, I know I can do it!
(Does anyone know how to add a countdown clock to a blog page??)
If anyone has had a lottery win or has a spare couple of quid they wouldn’t mind sending my way, please donate here … GoFundMe.
Before making the decision to pursue HSCT, I spent a lot of time reading and researching MS and available treatments so that I felt able to make an informed decision about how I wished to take on the disease. Others have engaged in this research and reached a different decision about what is best for them. I very much believe that it is important that patients are involved in the decision making in relation to their treatment and care.
Whilst learning about MS, I came across a blog written by two eminent neurologists from St Bartholomew’s Hospital in London (known as Barts).
They discuss various aspects of MS treatment and research and often initiate a lot of online discussion, both in the comments section of the blog and elsewhere. Until recently, the blog authors were very cautious about advocating for HSCT as a possible first line treatment option, but there has been a noticeable shift in their thinking, particularly since the publication of the recent MIST trial outcomes.
Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis January 15, 2019
This week, during a discussion on one of the blog posts, this response appeared …
A huge buzz went around the MS/HSCT world …here was a world renowned MS expert preferring HSCT, not as an eventual possible treatment, but as a first line treatment …hallelujah!!
A few days later, Professor Gavin Giovannoni (or Prof G, as he likes to be known) returned with a full explanation of his change of heart. Here are a few highlights from that post …
When asked on the blog yesterday which DMT would I choose if I had MS, I chose HSCT. One of my patients, who I have been looking after for over a decade, sent me an email stating how upset she was that I had never offered her HSCT. I clearly need to explain my position so as not to upset anyone else.
Firstly, HSCT is not on offer as a routine NHS therapy. At the moment HSCT is only considered as a 2nd or 3rd-line treatment in the most active patients. Another problem is that it is not on offer across the country. There are only a handful of MS centres that are prepared to refer their patients for HSCT. This means that access to HSCT is not equitable and explains why an increasing number of patients are having to travel abroad, at great personal cost, to receive this therapy. Inequity of care is against one of the founding principles of the NHS and is unacceptable.
The block in access to HSCT seems to be at the level of the neurologist/MSologist. […]
Another factor that has changed in the last 10 years is the strength of the evidence-base showing how effective HSCT really is as a treatment for MS. The most recent MIST trial, the first large randomised controlled trial, and several meta-analyses of HSCT, which have been extensively discussed on this blog, have confirmed that HSCT is a very effective therapy. […] […]
Please be aware that HSCT is not for the faint-hearted. It is a risky therapy with serious adverse events and quite a high mortality. Even a mortality rate of 0.3-0.5% is high when compared to other licensed DMTs. Should this stop us from offering HSCT first-line? I think not. If we are prepared to offer alemtuzumab, with its risk profile as a first-line treatment, why not HSCT? Most pwMS would agree that the decision regarding what is an acceptable risk to take should be taken by the patient and their families, and not the neurologist or other HCP. There is data showing that neurologists are much more risk-averse than pwMS. Neurologists need to acknowledge this bias, which is likely to be an unconscious bias, and let their patients make the decision. […]
Although Prof G shows some understanding of why many patients (like me) choose to travel abroad for HSCT, he later expresses his disapproval of that situation, as he feels that clinics in other countries will agree to treat all patients who are willing to pay, whether they are likely to benefit or not. Evidence from those clinics is that most pwMS are likely to benefit from HSCT in terms of halting the disease and many will experience improved symptoms. Patients for whom treatment may be dangerous are not treated at these clinics (people with severely impaired mobility or with concerning additional medical problems for example).
The full post and interesting subsequent discussion can be found here …
Slowly but surely, HSCT is becoming a mainstream area of discussion in the MS community. Many believe that it will become much more available as an NHS treatment option within the next few years. This leaves me and my fellow MSers with a difficult dilemma … I could wait and keep fighting the system, in the hope that I can one day access HSCT here. My big worry about doing that is that I don’t know whether I have time to wait. What if my MS progresses or I have a big relapse and become more disabled? What if my general health deteriorates as I get older, making treatment more risky? In addition, there is some evidence that HSCT is most likely to effective if given in the first few years after diagnosis and when the patient hasn’t already damaged their immune system by trying a series of conventional DMTs.
The more I read, the more certain I am that I am doing the right thing! I am fully aware of the risks involved in HSCT and of the long road to recovery, but I’m prepared to travel that road and the alternative – waiting to become sicker – is no longer worth considering.
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.
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.
We had such a wonderful night on Saturday and managed to exceed our fundraising target! I thought I’d post an update on the whole weekend …
A few of us arrived at Bonis Hall at around 9am on Saturday morning. We came in assorted cars and vans, loaded with equipment and drink and took on the task of converting a staff canteen into a stylish party venue. Furniture was rearranged, decorations, technical equipment and fairy lights put in place and within a couple of hours the room was really starting to take shape. Sharon (Spoilt for Choice, Cheshire) lent us her expertise and resources and we were delighted with the end result.
Thank you Sharon, Sophie, Connor, Niamh, Callum, Joe, Glenda, Jimmy, Gill, Anna, Zeb, Heather and Charlie 😘
There was a huge display screen on the wall and our favourite graphic designer had put together a slide show to tell our guests a little about MS, HSCT and all our fundraising efforts …many thanks Dave 😊
We whizzed home in the afternoon, showered, changed and glammed up, returning to Bonis Hall by about 5.30pm. It was lovely to walk back in again with fresh eyes and see how wonderful it all looked.
We finished a few last minute jobs and by 6.30pm our first guests began to arrive. I was a bit of a nervous wreck by this time …like everyone else I’d been on my feet all day and also hadn’t eaten much, so was feeling decidedly wobbly! I was also a little worried about having anything to drink in case I just keeled over!
An hour later I was feeling much better. Lots of people had arrived and there was a lovely happy atmosphere in the room. People seemed genuinely pleased to be there and I began to relax a little.
Our fantastic compère, Chris, opened the evening and welcomed our first performer, Ashleigh. I hadn’t heard Ashleigh sing before, other than on a video on someone’s phone, but I had heard several people say how good she was. This turned out to be quite an understatement! What an amazing voice! Thank you Ashleigh, for your wonderful singing – I’ve had so many people ask me about you and tell me how amazing you are! 😊
Next up was food time! We had lots of discussions about food on the run up to the event and a number of small hurdles to overcome. We wanted to keep the cost low and the quality high and we also had no access to the kitchen facilities. Thankfully our wonderful friends, Heather and Nick saved the day with their expert catering knowledge and culinary expertise and the decision was made to provide a choice of curries, with naan bread and popadoms. The food was delicious and everyone seemed to enjoy it. Thank you Heather and Nick xx
After the food, I managed to shuffle up to the microphone to say a few rambled words of thanks (my thanks is heartfelt, even if I didn’t manage to articulate it very well!).
The mammoth task of drawing the raffle was next. We had received so many donated prizes and it took quite a while to work out. I still have some prizes in my living room, so will be contacting more winners later in the week. We had sold a few tickets ahead of the event but most were sold by my wonderful niece, Anna, on the night. Thank you Anna ❤️
My slightly tipsy friend, Karen, then decided to embarrass me with a few words of support (thank you lovely xx). Karen is a wonderful supportive friend and will be coming to Russia towards the end of my treatment, in order to help me on the journey home.
Then it was time for more live music from Dan and Chris, who were fabulous! Thank you both 😊
(By this time my camera skills had completely gone out of the window, so I sadly have no photos of Dan and Chris! Please send me one if you have any 😊)
Edit: photo added 27.02.19 …thanks Glenda
Chris was fantastic as our compère and managed to keep everything running smoothly, despite us going off plan more or less from the start of the evening …thank you Chris 😊
Whilst all this was going on, there was also a bit of face painting (thank you Tiah x), a kids activity corner, selfie props and a football table.
We decided to stock and run the bar ourselves, offering drinks at a great prices but still managed to make quite a bit of money. Thank you to Jimmy and Gill from Swan Brewery who provided the beer and wine and did a lot of the leg work on the bar 🍻. Connor, Niamh and Sophie also spent a lot of time running the bar too …thanks all of you 🥂
We managed a token tidy up at the end of the night then all left for a few hours sleep.
By 9am a group of us were back at Bonis Hall for the big clean up! It was important that we got the room back to exactly as it had been, before the site cleaners arrived (otherwise we could have incurred charges). After much hoovering, scrubbing, mopping and car loading, it was as if we had never been there at all!
My sister, Glenda, was with me for the weekend and was a wonderful support, both practically and in helping to keep me calm! It was lovely to have that bit of time together – Glenda lives in Germany and although we are in touch a lot, we don’t get together as often as we would like. After taking Glenda to the airport, I went home and had a 3 hour nap!
The busy weekend and the hectic build up have rather taken their toll on me and 3 days later, I am still exhausted, my legs are very sore and my right hand is having episodes of numbness and tingling.
It was all worth it though …through everyone’s hard work and generosity we managed to raise …
Perhaps more importantly, it was so uplifting and heartwarming to see what can be achieved when a group of people work together with a common aim. Despite our exhaustion, we all really enjoyed the evening and it gave us all a positive optimistic boost. I really hope all our guests felt that too. There really is an awful lot of good in the world ❤️
Thank you to everyone who helped to make it such a great night ❤️
