I want to start this blogpost by saying a huge thank you to family, friends and other donors who have been in touch since my last post. It has been really helpful to hear your thoughts on what I should do with the remaining funds raised. Everyone seems to be in agreement – people donated (or ran / sold things / came to an event) because they wanted to help me deal with my multiple sclerosis. If HSCT is no longer the right choice to deal with my MS, the funds should be spent on whatever is. I am so grateful to you all for your thoughtfulness and support ?
I will be still making a donation to AIMS, as it is important to me that I do what I can to help others to access HSCT. You can check out the work of this small UK based charity by clicking the link below ?
Once I have transferred money that needs to go to other places, there will be around £16K remaining. This will be a huge help to me in the future as I progress to needing additional equipment to help me to stay independent. I can’t tell you how reassured I feel, knowing that this money is there as a safety net. Thank you again ❤️
It has taken much longer than I planned, for me to write this post, as my summer hasn’t really gone to plan. Unfortunately, at the end of July I caught Covid 19 and my recovery has been slow. I was prescribed antiviral medication (Paxlovid), which dealt really well with the virus, but brought a range of difficult side effects.
I am very grateful that this medication was available to me (big up the NHS ?) and was so pleased to get my first negative lateral flow test on 6th August. The last few weeks have been difficult and I am struggling with fatigue, weakness, shakiness and ongoing headache. Hopefully this phase won’t last too much longer and I’m in contact my GP in the meantime.
That’s it for now … I’m hoping to be back to full strength soon and to get back to blogging about wider MS topics and how I’m working on living my best life ❤️
I am so glad to have this illness at a time when we have access to information, opinion and support online. If my only source of information was my neurologist, my life would be a complete mess by now!
I am a big supporter of the NHS, my parents were both GPs and I’ve been on marches to protest funding cuts, but … I really don’t think the NHS has it right yet, in managing chronic illness and supporting patients with long term health problems. It is common for MSers to have a long fight to be taken seriously, to be referred to a neurologist, to be diagnosed and then to receive appropriate treatment and support.
Meanwhile, in other parts of the world, rapid diagnosis and early treatment has been shown to be the best option for patients in terms of minimising progression and disability and the most cost effective for health services.
At present, I see my neurologist for 10 rushed minutes once per year. He doesn’t even ask me about new symptoms or my opinion on anything! It’s a very deflating experience and I don’t feel at all supported (probably not his fault – what can he do in 10 minutes?). I should have had access to an MS Nurse for ongoing support and advice for the last few years, but unfortunately my neurologist forgot to refer me and I have slipped through the net (despite numerous phone calls and requests from me).
I recently had an appointment with an Occupational Therapist, which has been a really positive experience. She has given me advice, access to equipment and most of all, she has listened to how MS affects my life. She has also managed to chase up the MS nurse service and they are finally acknowledging my existence! Thank you Hannah ?
I have learnt a lot about MS through reading and researching online. The MS Trust, MS-UK, Shift MS, the MS Society (amongst others) are all excellent sources of information and guidance. Another source of knowledge is Dr Aaron Boster, who is an Ohio based MS neurologist with a Youtube channel, where he seeks to educate and empower people with MS. Dr Boster works on the premise that neurologists and other practitioners working with MSers should have the goal of helping each person to be the “most awesome version of themselves”. I love this! I want to be the most awesome version of me that I can be! Here’s a short video in which he answers viewers questions on how to manage their MS symptoms …
There are many other videos on a variety of topics linked to MS on his YouTube channel … well worth a look if you, or someone you care about, has MS.
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I have spoken before about following the journey of Scott McCormick (Gogglebox) as he underwent HSCT at Hammersmith Hospital in London. Scott is recovering well, has had no further disease progression and is now back at work and enjoying life. He is doing all he can t raise awareness of HSCT.
He has written a couple of blog posts for MS-UK to summarise his experience …
My main source of information, advice and personal accounts of those who are seeking or have had HSCT has been through the UK Facebook support group. This is a closed group for MSers and their supporters only.
I thought I’d share the link in case any fellow MSers are interested … link
Another source of support is a new UK charity, AIMS (Autoimmune and MultipleSclerosis), which was set up a little over a year ago. A group of MSers and their partners experienced the tough journey to access HSCT and they set up AIMS as a means of helping others on that journey. They are now a flourishing charity and have started rolling out travel grants to those of us having to go abroad for treatment.
You can read more on their website here. I would recommend anyone who wants to know more about the treatment, to read their excellent summary “What is HSCT?”. AIMS also have an active social media presence and can be found on Facebook and Twitter …please follow them and share with your friends.
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On Monday it will be just 6 weeks until I set off on my journey to Moscow in an attempt to stop my MS progressing further. I’m feeling really positive about my decision and so grateful for the support of my family and friends ❤️
I’m a little tired and stressed, but this is more about the worry of getting myself and my home ready and managing all the planning and practicalities involved.
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We are still fundraising and have a long way to go before we reach the total needed to fund my treatment. A family member is kindly lending me the outstanding funds as I am worried about delaying my treatment any further. This means that I will be continuing to fundraise after my treatment so that I can repay my loan.
My journey to Russia begins on Monday 16th March and we are holding a fundraising fare well tea party on Sunday 8th March. We’re still finalising the details and will share those with you soon, but please put the date in your diary … we’d love you to come along and bring your friends and family ?
Well it’s a week into the school holidays and I’m finally starting to unwind a little. I have decided not to book a holiday or even a trip to the IoM and to just stay home, relax, see friends and get a few jobs done.
My garden is small and I usually manage it myself, but the recent warm weather combined with heavy rain fall, means that everything has grown madly over the last few weeks and it’s is now a bit beyond me!
I am still anxiously awaiting news from the hospital in Sheffield. I am expecting an appointment in “mid-August” but haven’t been informed of one yet. It’s very hard to plan anything at all, as I want to make sure I’m available for the appointment.
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I am one of those people who needs to learn as much as I can about things that affect me, so have been reading and researching all things Multiple Sclerosis since before I was formally diagnosed. It was through doing this that I came across a BBC news report on the MS MIST (HSCT) trial, leading to further research on whether it could be the treatment for me and how I could access it.
In case anyone else is starting this journey or for anyone who is interested, here are some of the sources of information and support I have used.
In the UK, there are several organisations providing information and support for those with MS, their families and friends. Perhaps the most well known of these is the MS Society. The MS Society provides information via their website, has local support groups all over the country, funds research and campaigns on behalf of MSers. The MS Societies in various countries are all linked and receive some of their funding from major drug companies. The information they provide about MS is likely to be very reliable, however, there is concern amongst some MSers that that the Societies may be influenced by their pharmaceutical backers and that people with MS may not always be their first priority. Certainly, it is very evident that the MS Societies do not promote HSCT and some of the information they provide on this is both inaccurate and overly negative.
The MS Trust is another large UK organisation providing information and support for those impacted by MS. The information on their website is reliable and easy to understand and I have also found their telephone helpline to be useful.
Shift MS is a patient driven world wide organisation providing an online community of fellow MSers, where all aspects of the disease, treatments and everyday life are discussed.
All of the above have social media presence on Twitter, Facebook and elsewhere and provide news and commentary on new developments in managing MS, living with disability, entitlement to benefits etc.
When researching HSCT, it is not easy to find reliable information and patient experience. The most reliable and supportive resource for me has been the Facebook groups, which are run by HSCT patients.
And a very helpful UK group – UK HSCT for MS and Autoimmune Diseases (Facebook group) – where UK citizens can get advice and chat with others about accessing treatment here or abroad. There are further groups for the clinics in Russia and Mexico (as well as some others).
There is also a new UK charity, the world’s first that supports people with MS and other autoimmune diseases to access HSCT. The charity was set up by some HSCT patients and their partners and had its official launch last year. They are mainly operating via their Facebook and Twitter pages at the moment and have recently launched their first invitation to those pursuing HSCT to apply for financial support with travel expenses.
These have not been my only sources of information … I have also read numerous research reports and neurology opinion pieces, which have all helped me to feel confident in my decision to pursue HSCT.
A couple of my fellow HSCT UK Facebook group members have recently had their stories reported in the national media.
Colette and Lucy were both successfully treated by the team in Sheffield. You can read more about their stories here … Colette and Lucy.
Today is World MS Day, so I thought I’d better take part by writing a blog post!
I don’t have an awful lot to update you with, as my time and energies have been taken up with non-MS matters lately. I have been off work this week (half term) and have spent the time catching up with jobs I can’t manage during a working week, as well as seeing friends, which has been great. I even managed an all day birthday celebration on Saturday, leaving the house at 10.30am and getting home after midnight! I really was proud of myself for lasting so long and it was a lovely fun day. I spent most of Sunday resting and recuperating but it was worth it!
I also want to tell you about a new MS charity which has a particular focus on supporting people living in the UK to access HSCT. The charity began about a year ago and is managed by volunteers, all of whom have either had HSCT themselves or have supported a partner having treatment.
Their aim is to provide advice and guidance on HSCT treatment both in the UK and abroad (at the moment they are only recommending Russia and Mexico). They have also started raising funds and hope to be in a position to provide grants to people needing financial support to access treatment.
Here’s an amazing video showing how HSCT has changed the lives of many with MS.
Don’t forget, Matt’s Lake Windermere 1 mile swim is coming soon ….
Yesterday was an exciting day in the UK world of MS/HSCT, when BBC Breakfast did a feature on HSCT.The item featured Roy Palmer and his partner, Helen talking about the amazing life changing improvements he has experienced following HSCT.Roy was in a wheel chair for 10 years and is now walking again!
HSCT works!! ??♂️
Roy is a member of the online support group that I am also part of and is living proof that HSCT can help those who are older (Sorry Roy!), have long established MS and who are no longer mobile.Like most of us, Roy had to fight to get HSCTand prove that he met the strict criteria required for NHS treatment.It was wonderful to see Roy so happy and positive on the BBC Breakfast sofa!
Whenever the BBC feature any discussion about MS, they always wheel out an “expert” from the MS Society and this is where many of us begin to feel frustrated at the slow progress in making HSCT more widely available to MSers who want and need it.
The MS Society does some excellent work in providing information on the disease and on current mainstream treatments.They also facilitate many groups and activities at a local level, which is a huge support to many.But they are not only slow to promote HSCT, but actually continue to provide untrue information.HSCT is not an experimental treatment and is not only appropriate for a very small number of those with MS.There are too many success stories from patients with diverse presentation of the disease for them to continue saying this …yet they do.
Worldwide MS Societies are all connected and are partly funded by the big pharmaceutical companies, who make millions from the drugs currently used to treat those with MS. I guess if we all had HSCT, hardly anyone would need those drugs anymore and their funding stream would end. I don’t know if this is the reason for their reluctance to get behind HSCT, but find it hard to accept that an organisation that exists to support those with the disease, does not always seem to have the interests of patients at the forefront.
As well as fighting for my own treatment, I find myself wanting to fight to help others.So yesterday, along with others I found myself posting on BBC articles about the item, directing people to more reliable sources of information.
The UK now has a new charity dedicated to supporting those with MS (and other autoimmune diseases) to access HSCT.The charity was formed by a group of MS Warriors and partners of MS Warriors who have had HSCT treatment and want to make a difference to others.
