Having watched “Searching for a Miracle Cure” I found it reassuring that my difficulties are all MS related. Out of choice I don’t mix with fellow suffers and so to see that Mark Lewis is a mirror image of me was especially interesting. Thankfully my symptoms are not as bad as his, however like him my right side is the problem and my gait, hand problems and frustrations are exactly the same. For instance I now know that my clawed hand is probably also down to MS. Like him I refuse to be beaten and keep pushing myself gardening, weight training and walking. If I fall over then it is a small price to pay for enjoying the outdoors, using walking poles is a great help and I kid myself that I don’t look disabled in doing so. Unfortunately my language is all too often shocking, but using such language is a way of dealing with my frustrations and I do try to prevent others from hearing me letting off steam. Thank you Mark and Channel 4 for reassuring me that I am just a normal MS er if there is such a character.
I noticed a lot of similarities as well.
I get very very frustrated, especially in doing DIY tasks that used to just come naturally.
I can get a bit snappy too with my wife, which is totally unfair because she is brilliant.
She does quickly put me in my place though, which is a very very good thing.
I noticed very clearly some of Marks movements were identical to mine when I’m struggling, albeit his were on a greater scale, but so similar.
For me I think perhaps being a stubborn fella is a good thing, I do push myself so hard some days that I find I’m a wreck, but I’ve always been a believer in the phrase, “use it or lose it”.
I refuse to give up work, and like you will still try my best to do things in and around the house even if it kills me.
Well, being killed is probably going a tad too far, but you know what I mean !!
ACCEPTANCE & TECHNOLOGY Another inconclusive programme - with a lot of advertising. However it did make some good medical points, and on adapting and acceptance - it showed: Mark has a life expectancy of 65yrs [according to his doctor] how the brain shrinks; the difficulties of getting around town in a wheelchair, or on a cheap crappy scooter; difficulties doing simple tasks; how accepting disability and adapting to it would be better for Mark - I mean if he had a super expensive powerchair with lights, and extras to whizz around on would he be so grumpy and dependent upon his wife to push him around?? When people say “use it or lose it” - to me this indicates they have reached a point where they need to take stock and seek the best technology to help - then you don’t need to swear at your loved ones and be so aggressive. I mean a wealthy lawyer should be able to buy a top of the range Segway X2 Offroader. Segway X2 Offroad - YouTube Fay
You’ve made some good points Fay. But I’m sure Mark would take enormous exception to your saying ‘how accepting disability and adapting to it would be better for Mark’. Did you see the same man I did? There is nothing about Mark that says he will / should accept disability. He was straightforward in his statement, ‘this is a battle and I am going to beat MS’. He’s not going to accept and adapt.
However, I can’t imagine why Mark doesn’t use FES? Surely that would make a massive difference to his walking? Failing that, a SAFO, or AFO of any kind. Even a Foot-up would be better than just living with foot drop. There are forms of technology that can help without having to accept disability. It simply another weapon in the battle.
I actually don’t think someone who currently manages to walk around needs to accept a wheelchair / powerchair more than occasionally, which he did. Not with very good grace, but then, I’m an ungrateful bitch as well when it comes to accepting disability. But it was a very good way of showing how bloody hard it is to get around, especially a city you don’t know well.
Sue
I’m no where near needing “aids”, thank god.
However, I strongly believe that if you can, you need to get off your arse and be as mobile as possible.
Just because someone uses the term “use it or lose it” does not indicate that they have reached the point of needing or seeking terotechnology to get around, it’s simply a term to spur one on.
Also for me being “snappy” does not include swearing or being aggressive, god for bid if I ever tried that on !
Then I would need a wheel chair because my other half would yank my testes off !!!
I do agree though that Mark was a bit too verbal in his attitudes when speaking to his wife.
Many partners might have walked away, especially as they had only been together 2 years.
Wow that looks amazing! I am wondering if that was what i saw on the back of a car yesterday? when we drove thro our local town i saw what i thought was a segway hooked on (towbar?)back of an audi and then noticed the blue badge as we passed.Joked to wife she needed one of those.
TECHNOFIX
If I had £12,700 I would buy one of these - twice the price of my powerchair.
Fay
MS language Vs Quest for harmony
Sue, you make some excellent points about Marks should use more treatments and aids.
But on Mark’s statement, ‘this is a battle and I am going to beat MS’.
This is a poor analogy - a propaganda slogan from the drugs lobby, not really something you want going
through your mind every day.
How exhausting! and how awful when you are defeated by the simplest everyday task - like putting your socks on - or making a
cup of tea. No wonder he is so unhappy.
He feels like a failure every day because he lost the “battle” of the socks.
I think my point is - Mark needs to reframe things away from “battles” and “beating MS” which he is losing. We are ALL losing
this battle actually. Mark was not cured live on tv - he is going into the advanced stages of MS and needs to adapt
and accept this gracefully and technology offers him an opportunity to make his life easier. To gain a sense of peace and
harmony in his life - in my opinion - he needs to let go of the concept of battling and beating. There is no war - there is just an
incurable degenerative disease.
Fay
I firmly believe that keeping as fit as possible and having a determined attitude goes a long way to combating adversity. Muscle strength can help enormously with keeping mobile especially with a disability. Added to this making the most of any mobility you have whilst you can is very gratifying as far as I’m concerned. I am very lucky in that I have a very slow (but now seems to be accelerating) ppms and am about to turn 78, was diagnosed in 1996 and feel sure that I have had the MS even since my late teens.
Negativity is not for me thanks.
I am in almost total agreement with Fay. However …
The Anglo-Welsh legal system is essentially confrontational and combative (“Injury lawyers for You”, “Medical Malpractice Suits our speciality”) and if Mark is a lawyer, then that is the way he would think.
His problems would really start if he has thrown a lot of money on a cure and it has not worked. I wonder if he read the fine print when he signed the release form. I bet that is when he finds out there were no guarantees that the treatment would work or stay working.
Geoff
This is one of those fine arguments where because we have all watched an edited TV program covering someone’s life with a disease we happen to share, we feel as though we ‘know’ Mark and Mandy, his disability, his motivations, their relationship et al.
The fact is, we know a little about the particular treatment he underwent, we know a little about his particular brand of MS, and almost nothing about Mark or Mandy or indeed their relationship.
So deciding that Mark either does or doesn’t need to ‘fight’ his MS. Or get mobility aids (including my own suggestions of FES or AFOs) is a bit ridiculous really.
Mark is an intelligent man, he understands his MS and his disability better than any of us. He surely understands that in some ways, life is easier when a wheelchair is utilised, hence his use of a sea going ‘chair and the ridiculous scenes of Mandy pushing him up and down hills ‘lost’ (with the accompanying film crew!) So I think we should leave the subject of what kind of acceptance and adaptations he needs for him to decide on.
Sue
Well said Sue, thoroughly agree with you. My posting was prompted by how satisfying I found the program, from the point of view that seeing Mark and the problems that he was experiencing, helped me in feeling that all my problems were down to MS and that my diagnosis was correct. As I have already said I chose not to mix with other suffers, but to get on with dealing with my own situation in my own way, so seeing Mark as a mirror image was reassuring.
Only the individual concerned knows what is best for them. I only mention how I conduct myself in the hope that it might be of some help to other sufferers who are finding it difficult to deal with their problems. To state the obvious your doctors advice should be sort if you are uncertain whether any activity is right for you. I am fortunate with the type of MS I have and the way it has progressed and I am know that for many others their MS leaves them unable or wrong to do what I do.
I do sympathise with those who are not as lucky as I have been, but also feel that having a positive and determined attitude can only help, even if that is extremely difficult for many sufferers to do so.
Mark isn’t the sweetest guy on the planet - and he used the ‘f’ word a few times. A breath of fresh air! So often we hear of someone with m.s. who is coping with everything gracefully, has ‘accepted’ things (whatever that means) and has the obligatory ‘wonderful sense of humour!’ i.e. they are responding to having m.s. in the way the able-bodied are at ease with. As I saw it Mark was responding in a ‘normal’ way to what is a f****** cr*p disease! He may at beat it, he may not but at least he’s giving it a run for its money!
Hear! Hear! You keep fighting Mark. I don’t accept it and never will. I don’t think there has been a day since diagnosis that I have not sworn at something or another.
Mags xx
When I see these kinds of programmes I always check the MS Barts Blog to see what they, or the Mouse Doctor, says at Multiple Sclerosis Research: Searching for the Miracle Cure. MS in the Media Would be interesting to know more about this piece of research, rather than stuff about miracle cures. But I realise a programme that advertised itself as - solicitor experiences placebo effect in Israeli hospital - won’t get many viewers.
I have been reflecting on the documentary after watching it last week & watching it again last night. I have concluded that I am very grateful to both Mark and Mandy. For two reasons, the first is that one of my coping strategies is holding on to the belief that a cure will be found, therefore I only have to deal with this in the medium term (I am not expecting it next week & recognise that even once a ‘cure’ is found it will take time to get through niece). If people do not take part in trials a cure will not be found. Having promised my children (both over 18 & currently at uni) that if I am ever offered a ‘trial’ I would take part, (their attitudes are based on both my well being & ‘the greater good’.). However I can imagine the emotional roller coaster, especially not knowing if you are being given a persibo Must be very very hard, although very worthwhile.
the second reason is that the documentary was like this forum, a way to think and reflect on ms & the effect on those closest to us. As each of us are different people, our relationships are all different. I feel the fact that Mandy was willing to be in it added a great dimension and something for us ms people to reflect on. I feel it was very brave for them to allow the world to see a peak of their relationship.
what I found really interesting was the watching ‘when to help/ when to back off’. It’s made me reflect on being clearer regarding the help I want / need. For me learning a new way to have relationships is the biggest challenge of ms. I am not claiming to have ‘mastered’ living with ms, but this documentary did help.
I agree with you Sarah.
However, this documentary had another message about work - because it also coincided with the ‘Employable me’ PR
campaign. Keeping disabled folk in work as long as possible. How many times were we told about Mark being a top lawyer
although he contracted MS in his 20s and still working hard at 50. It justified the cuts in PIP in a way.
Just an observation - I don’t think the programme was about MS really or finding a cure - it was about work and disability.
I suppose staying in work is my biggest priority, I like the life & independence the pay gives me, I like holidays & meals out. I did not like the isolation I felt when I was off work for 5weeks. I like having things to focus on that are not about me. Thinking about it that was another real positive in it for me, he is older than me, he has different symptoms to me, but he is still working.
Ok so sometimes I feel like ‘this is too much’. I am not positive all the time & I do focus on my days off & then get frustrated when a small task takes it out of me so I don’t get the other 3 things done that I wanted to do, but fingers crossed I will get to go from work to being an OAP.
I am not relying on it, I except that by the nature of RRMS that at any point I may have to reavaluate, but I can do my job as i am, it’s now harder, but I can. It’s a choice, I have thought it through & I want to stay in my job despite it being challenging. If I did not love my job it may be different.
I respect those who have felt the need to make a different choice, different jobs pose different challenges. When I read about the challenges of claiming on here it does frustrate me. Most employers can not & would not be able to support someone who could only ‘preform’ part of the time. In the same way a care package for an individual can not be ‘day by day’. It seems like the system needs to treat ms as a different condition. It does scare me what things will look like financialy if I do become unable to do my job.
I agree that the program was not so much about MS, stem cell therapy or finding a cure. But although I can see your point Fay, I reckon it had more to do with ‘entertainment’ than any particular message. It’s something we keep forgetting, just think about the title: The Search for a Miracle Cure. In no way did the program live up to any part of this title. It was the story of one man’s inclusion in a trial. No one involved with that trial suggested they were looking for a Miracle Cure. The image of the young fit looking man jumping from a crouch to a leap didn’t show him before the treatment, it didn’t state what level of physical fitness he normally had, neither did it follow his progress over the following months. There was that one section, 2 hours after the first treatment, when Mark was able to lift his right leg, dorsiflex his foot and shake hands. That had me amazed. But by the end of a few weeks, he was back to his ‘normal’, and at the end of the program, he wasn’t much physically improved, if at all. Yes, you can argue that it fits with the governments agenda to get physically disabled people working. But what it did show quite clearly (to me at least) is that without a carer, Mark couldn’t get dressed. He was also right handed and his disability affected his right side. Therefore, he probably required some considerable help (technological or otherwise) to continue working as a high flying lawyer. Having the problems with my hands that I do, which are not as pronounced as Marks, means that I can type on a touch screen tablet, using my thumbs only. And that hurts, so I can’t do it all day long as I used to at work. I think the title got everyone overexcited, and the program failed to deliver on that title. But we shouldn’t forget that it was an hour long TV show. It didn’t do anything more than help some people get their heads around MS (like Sarah), it possibly gave some people some basic info about MS that they didn’t have before. It, thankfully, showed that people can have MS for years and years and not be full time wheelchair users. And that people can continue their careers with MS, assuming they have the appropriate support mechanism to enable this. It showed that there are constant trials into treatments for MS. But it didn’t show a cure and it didn’t show a miracle. It didn’t demonstrate that everyone with MS should be capable of work. But it did show that some people are capable of more than they have been seen as doing. But above all, it was an edited television program. So all the conversations we are having about it are probably the most worthwhile thing about the show. Sue
Agreed Sue, “all the conversations we are having about it are probably the most worthwhile thing about the show.”
RRMS, PPMS and SPMS - don’t really describe matters relating to work - which the government is obsessing about.
I think this gives evidence for the need for ‘Advanced MS’ to describe those no longer able to work.
Fay