Willing to Help and Advise, and "Coming back in a Wooden Box"...

I hope they don't mind me saying, but I was contacted recently by someone through Facebook Messenger out of the blue. Her brother-in-law had recently been diagnosed with primary progressive multiple sclerosis and appeared to be in a bit of a spiral downwards in terms of not quite knowing what to do with the oftentimes damning diagnosis. There is no doubt that a diagnosis of PPMS can leave one feeling a little helpless and hopeless. The treatment options really are few and far between…

This brother-in-law was in his 50s, and on the EDSS scale a few points above me. He and his wife were keen to meet me, especially as they lived locally and had read some of my blogs and seen some of my videos, to talk about the option of going to Russia for HSCT.

It turns out that I ended up meeting them that day for a cup of tea in a cafe fairly locally. We spent a couple of hours talking and it was really great experience, hopefully for them as well. I was able to set minds at ease and talk an awful lot about the logistics and reality of HSCT. It was really useful for them to see someone who had had it and seems to be pretty well and singing its praises. It's one thing reading about these things on blogs and on a forum like Facebook, but it's quite another meeting someone face-to-face. I suppose there is a potential that people who received the treatment conspire together to present a false sense of positivity and to evangelise, so it's good to have the claims defended and expressed face-to-face.

We talked about the whole range of topics pertaining to MS: work, diet, treatment, disability, etc.

The man's wife came to me with a good number of decent questions about the logistics and the worries that she and her husband had. For me, it's about setting out the pros and cons to the treatment and dealing with them appropriately. And for me, I would split the cons into two simple categories:

• Financial – the cost.
• The risks involved in the treatment and recovery.

Although the cost of the treatment is substantial and a lot of fundraising needs to take place, either from something like remortgaging or from fundraising events and charitable donations, if, if you have a handle on your finances, then this takes a huge worry off your shoulders and means the whole process is a lot easier as you can concentrate solely on the treatment itself. I mean, you can worry about the logistics like getting to Russia and sorting out visas and what have you, and those are genuine hassles, but I think that they are, in reality, hassles.

One thing that you keep hearing from neurologists and other professionals is something like, "You'll end up coming home in a wooden box." This, in my opinion, is pretty egregious and often comes from a position of ignorance. As I've mentioned before, many neurologists simply don't have enough information or knowledge about HSCT, given that it is the jurisdiction of haematology and haematologists, or they are resistant to change, and don't look at the most recent and accurate facts and figures.

So it was for me in this meeting with these two lovely people. The worry that hangs over potential HSCTers in terms of mortality and risk of infection and the treatment in Russia is palpable. I could set their minds at ease with regard to the hospital and the standard of both treatment and equipment and the hospital itself. This is something that a lot of sufferers who have had treatment in Russia have also said. We go there with the sense that the paint will be peeling off the walls and with our preconceived ideas of Russia and, to a man or woman, we are blown out of the water by the quality of care we received there.

With this chap I talked to, and his wife, they were worried about the recovery and the risk of infection. Obviously, I am a sample size of only one and may not be representative, especially as I breezed through both the treatment and the recovery period. However, for what it was worth, I was able to set their minds at ease to say that you don't have to go crazily overboard in terms of being really careful about cleanliness and cleaning. A properly sensible and cautious approach is all that's needed, in my opinion.

Given that one of the two main stumbling blocks for this pair, the financial one, was less important than issues of safety and infection and recovery, I was able to put them at ease from my own experience. However, everyone has different experiences of HSCT and some people have complications find the whole process a lot more difficult than I did. I can only speak from my own experience and I was keen to express that.

The point of this piece, I suppose, is to say that I am here for advice if you need to contact me, and am happy to meet people locally; but also that, when you take finances out of the equation, and especially for someone with PPMS, it's a no-brainer. Yes, like everything (including the standard disease-modifying drug treatments), there are risks. But the (potential) benefits, for me, easily outweigh the (potential) risks. 

You only have one life, and you don't want to see it continually spiral downwards. HSCT is positive action. It's that area of control we people with MS can finally have over our destiny. It's that opportunity you just have to grasp with both hands.