Living with Ian's MS

This weekend it became clear why Ian hadn’t heard anything from the Vascular Dr in Paris who has been doing procedures for CCSVI in MS patients.

The doctor herself phoned us from her home on Saturday to explain she is unable to do any more operations on patients with Multiple Sclerosis and if she does then she is breaking the law. She has to wait until the French health authority give permission for CCSVI to be recognised as a cause for MS. She hopes that this will be January or February 2011 but cannot promise.  In the meanwhile Ian can have a test but not in Paris as all the radiologists who do the doppler test are being closely monitored to make sure they are not treating patients with MS. She did say we could go abroad for the treatment but if we do that and Ian needs more treatment in the future then he would not be covered here by the securité sociale. As CCSVI is an illness that sometimes needs further intervention going abroad is not really an option at this moment in time. As you all know we had already discussed the problems of treatment abroad and decided it would be better if Ian was treated here (and cheaper )  This I explained to her and she said that she would send a prescription for Ian to have the first test here in our area and would keep his name on her list and as soon as she was allowed to treat patients with MS then she would be in contact with us.

We are not surprised she has been stopped as MS is big business for  companies who give out tablets and do reserach  for health (I am trying to avoid the spam by being clever with my words, I bet it doesn’t work!)  and they do not want the illness treated sucesfully with an operation as they will not be making any money. At the moment it costs a lot to treat someone with MS with tests and drugs (Ian has been offered a lot of these but has refused them, one treatment alone cost 1,200€ a month!) and this is for life. The cost of CCSVI is estimated to be around 6,000€ and is a once possibly twice intervention.  Those mentioned  companies have a lot to lose and are fighting the science and research currently being published for CCSVI and MS.  I feel they will not win,CCSVI  has been talked about as a possible cause of MS since 1890 something and in 1998 research papers were published supporting it but neurologists who currently treat MS rejected the claims.  But it’s too late now to shut the door. CCSVI is BIG news on ALL the MS forums and despite France discouraging  the sharing of information of CCSVI on the Internet earlier this year it is growing here too. So it will only be a matter of time before everyone with MS will be tested to see if they have another illness called CCSVI, Ian is fortunate that he is one of the first on the list for when it becomes approved here in France. We are both very disappointed but the light at the end of the tunnel is still very bright, the tunnel just became a little longer.

I now have more time to raise funds as we know we are going to have to pay a percentage for some of the treatment possibly as much as 35% of the total cost.  The CCSVI fund currently stands at 175€ and whilst I know that won’t be enough it’s a huge help and we shall keep it safely tucked away until we need it. I am sure  everything will come out right in the end. Life sometimes does

We still haven’t heard anything. I am thinking that maybe the information will arrive by post, if we haven’t received anything by Tuesday I’ll write again. The secretary did say in the last email they would be in contact so I guess I should be patient !

In the meanwhile life is ticking on gently. We get our “new to us” car tomorrow and our UK car goes back to be sold  Monday with my niece Melanie.  I will then have to convert £’s back into €’s to keep my promise to the bank. I feel like after the shall we go? stay ? turmoil that I felt earlier in the year this is a commitment to France. Daft ? It is isn’t it as I could sell the car in the UK but I feel it is a commitment.

I have started the Ready Steady Anglais workshops and have had a very limited response that’s marketing speak for no one has come We  had two children on Monday and those two are returning today for another session. I think that these ateliers are something I am going to have to do during school term time as whilst I am not giving English lessons it is perceived that I am. Many of the local children go to grandparents during the holidays and those on holiday are, quite understandably, more interested in the beach. I’m not giving up though I shall carry on during the holidays and then re-launch in October on Wednesday’s and Saturday’s. Today we are doing an animal hunt, 2 Elephants, tigers, rhinoceros’s, leopards and Zebras have left home for the woods and the play park. We have to go and find them following the picture clues.

I have also been busy writing my next site, www.servicemaisonsecondaire.com it’s a bit of a long address but it does what it says on the tin. I have written the flyer and as many older French people don’t have Internet access I am also doing a little brochure. I am concentrating on the flyers and the site at the moment, I want to be ready by end of July to start distributing them as 99% of the houses will be open during August.  I am hoping that Ian will have the CCSVI and he will be able to help me run it:-) That makes me feel really good just thinking about that.  When I have SMS  finished I have another idea to work on, so I am keeping busy

Ian hasn’t had a good week, he is very wobbly on his feet and his hands aren’t working that well so I have had a lot of clearing up to do as every bottle, jar, tube with a screw top that he has opened he hasn’t put the top on correctly. He doesn’t seem to be able to do the twist action required on the right thread and I have had tomato ketchup in the fridge dripping, milk dripping, jam not closed and the most frustrating the dishwasher salt dispenser top wasn’t put on properly and I did two dishwasher cycles before finding out what the problem was. Ian had emptied the first load so I had to sort through the cutlery and crockery finding the salty items.

Thank you for reading I shall be back soon

and no its not the car although that would have been exciting before this news!!!  We have found a Dr in Paris who is doing the “liberation” procedure privately. apparantly she doesn’t have the very latest scanning equipment but she is finding and sorting our peoples squished veins in turn  improving quality of life.  I wrote to her yesterday and gave Ian’s MS history and explained about the onset being after three weeks of working with his neck crinkled up and the deterioration since then. We had an email last night from the secretary asking for more information which I have replied to. We are both  jumping with hope that Ian may get an appointment. Keep your fingers crossed……..keep reading…..

Our liberation fund stands at £142 (thank you to those who donated) and that will go  towards the cost. At the moment we don’t know how much more we will need. We understand that we may be able to get part of the costs covered by the health system here but we will have to pay for some of it and accommodation etc but that doesn’t matter as it will be a LOT less than a trip to Poland or any other country AND follow up treatment will be easier here than there.

I am so hopeful but also cautious because I don’t want to be disappointed which is stupid. I am naturally a positive person and this news just makes me feel even more positive. I shall keep you all posted here. Fingers crossed and prayers please : )

and the car? we get it on Saturday

xx

I am not sure this is the right title but I can’t think of a better one ! I need to start by saying that I don’t believe that women are better than men or vice verse we are just different. Do I believe we are equal? No and I don’t believe we ever will be. That’s not to say I don’t think women should be paid the same as men for the same job. They should, but each of the sexes will  approach that  same job differently bringing different qualities and skills. What I am writing about is not meant to be putting men down, its just how I feel based on the experience I have had. I am not disrespecting Ian either who is in my eyes a champion. The following are just my thoughts, put down in words which is the essence of this blog.

I have  reflected over the last few years  what I would have done if it had been me that got the MS label. Would it have impacted on my life as much as it has Ian’s ? I think no, based on the life I had, remember I wan’t a career girl  but I don’t know as I don’t have MS. What I do think is that the majority of men when faced with a life changing illness rely on their women folk to become their therapists as well as their surrogate mothers. If you think about it woman are bought up/programmed to care and  they do that. (I know some woman don’t but I am talking about the majority and including myself in that number) As woman they want to put everything right, they are the ones who arrive with a flannel, or sick bowl, who are there to rub a back or stroke a head,they buy the paracetamol, find the paracetamol, get the glass of water then issue soothing words. When we are ill, man or woman, what we would really like is to be taken care of, by our mothers. Some of us were lucky enough to have mothers who cared, others were not but speaking from personal experience regardless of what mothering skills your own mother had or didn’t have when you are poorly you want one with all the stereotypical skills. Woman learn from an early age it is not going to be the dad who administers the front end care (I know there are exceptions but I am not talking about them) and they know that when they are ill/poorly/under the weather then the only person to look after them, if their Mum is not around, is themselves. So we woman learn to get on with it. We might moan, groan and complain but for the most part we just get on with it, even if it is a HUGE label we still do what we can.  Men can slump into a groove and then it up to us partners who don’t have the illness to become the cheerleader, motivator, therapist but what about those men who don’t have a woman/partner who can do that? or even wants to do it? Who gets hold of those men and gives them a metaphorical kick up the backside? and how long does a woman be all of those things without any recognition or support  for this additional role she is playing ? But is it really the mans fault ? Could it  just be in their nature and we woman nurture that?

Well, we haven’t got it yet but we’ve seen it and now I am organising how to get the money out in the shortest amount of time.
I like the colour its sort of lilac/grey – if you are a woman you know that is extremly important – I have had to compromise on my lists of wishes as the car has no cruise control but it does have a GPS So hopefully no more of my MS afflicted navigator getting confused and taking us round in huge loops or not being able to read the road signs quickly enough. I’m really good at map reading I have had years of practise whilst Ian did the driving. We had two holidays in France when the farmer blockaded the roads and I had to take us across many small villages and country roads to get us to the ferry on time. Most days Ian finds it difficult to read and adding the movement of the car makes the task almost impossible. So the GPS will be helpful.
So what have we got? a 2002 Piccasso Xsara 2.0 HDI Exclusive, bags of room and hopefully that will be it as far as car shopping goes for the next few years. Keep your fingers crossed.

I can cope with most things that are happening to Ian the one thing I find really hard to cope with is his periods of ??? I don’t know what they are, they could be depression or black holes or bad headaches or or or I don’t know. and I find that really frustrating so much so just writing this makes me want to scream. I shall try and describe what it is like.  Those that know us know that I am the talker always have been but Ian always has something to say.I used to squash his foot under the table to be quiet long enough so I could talk   Most of the time now especially when we are in company he doesn’t do much talking because he finds it hard to listen and process information especially if there is more than one conversation or there is background noise. This give the impression I am doing the talking for Ian…I’m not!  Ian did say to me a few months ago I should be pleased that I was the one in charge all the time now as that was what I had wanted since we were married…….now that comment I know is just a marriage one ….well I hope it is….nope can’t go there with that thought, moving swiftly onwards…….

There are times when you can ask Ian something, usually about how he feels or what he thinks and he doesn’t respond. At all. He doesn’t answer, shake his head, nothing or he repeats the question but then still doesn’t answer, shake his head,nothing. I wait for a reply as I am not sure if he is trying to process the information and that part of his brain on that particular day isn’t working or his pain in his head is so bad he can’t think ( I get migraines….often so can relate to that) or he is depressed or he is so emotionally overwhelmed he doesn’t know what to say.  When that happens I feel like I am being ignored and how dare he ignore me? I am the one person who is trying to help him and I am still here beside him and surely that should count for at least an answer? I know that sometimes there are no words to answer someone but there is always a comforting hug/squeeze/touch to be given. Ian doesn’t even attempt to do that. He just sits there. Saying nothing. And I feel like hitting him…….hard.

A question I ask myself daily.  Sometimes it is hard to know the difference. I recently posted on facebook about this particular  beach episode. For those who don’t know we live not too far from the beach and we do make the most of it.  When the boys were small I used to take them to the beach all the time but Ian was never really very keen. One of the positives to come from his MS is that he now appreciates the beach and the quiet reflective time it can give.  This happened a couple of weeks ago and I think deserves posting on my blog as I would like to continue this subject theme another day:-)

Going to the beach involves me taking on the role of pack mule as Ian can’t walk and hold anything, he needs all his concentration to put one foot in front of the other and some days needs me on one side propping him up.  He can take light stuff in a rucksack which does help… a bit.  As his memory isn’t that good I am the one who tries to organise it all. So, on this particular day like many others I made the sandwiches, mixed a drink added ice cubes,packed the swimming things, towels, sun tan lotion, got the windbreak, parasol and made sure everything was all wrapped and packed in the correct bags. Whilst I was doing this Ian was getting the books and reading glasses ready. As he had nearly finished his book he asked me to reccomend a new one. So I went and chose a book for him then put it on the table letting him know it was there. I have a habit of wondering off at a tangent and getting distracted. I like to call it multi tasking I was looking at emails and closing down the computer and when I looked up Ian was sat outside waiting. “You ready? ” I asked “I am. ” he replied ” Did you get my book ? ” I asked ….. I feel I always have to check…… “I did” he replied.  So we set off for the beach with everything strapped to Ians scooter and me on my bike. ……… I really must take a photo as it is comical to look at….not me on a bike the  scooter !

We got on the beach and I unwrapped the scooter and loaded myself up for the pack mule part of the journey…..  In fact Ian having a scooter is another positive of MS as we never would have got everything we take on two bikes! ……. We walked for 15 mins along the beach and Ian decided the 300 metres was far enough for his legs and I dropped everything. I then went about setting up “camp” whilst Ian sat and recovered. I put up the windbreak, laid out the towels, opened the parasol, put the food in the shade, got Ians rucksack open and got out two books and no reading glasses. “Where are the glasses?” I asked  “In the bag. ” came the reply “They’re not and where is my book? “  Ian took the bag from me and had a look as if there should be a secret compartment my book and glasses had fallen through. ” Oh S*** ” he swore ” I think I have forgotten yours “.   I then  had a choice. I could either sit on the beach and stew or go back home and get my book.  After some consideration I decided……….. I  ate his sandwiches.

Twice in one day! The first one didn’t really count as it wasn’t a “real” blog.

Over the last couple of years Ian hasn’t been able to work and our income has been halved and halved again and really a car has become a luxury we can ill afford but also one that we cannot do without unless Ian is sentenced to a life restricted to where his scooter can go at the grand speed of 3 miles an hour.  Multiple sclerosis shrinks your world and I don’t want to shrink Ian’s any more. Our temporary englsih car need to go back to the UK  so tomorrow we are going to look at a car which hopefully ticks most of  the boxes but the decision will be mine and if it turns out to be a mistake than that will be my problem to sort out too.

Cars have always been Ian’s domain with me just needing to know the important stuff, like where to put the fuel, check the oil , water and what colour it is. Now it is very different. Car buying has taken on a whole different criteria and I am in charge.  Ian used to do any maintenance and if a car was making a clunky grinding sort of noise he didn’t just turn the radio up …which is what I do….he would know or have a jolly good idea where that clunk was coming from and what was needed to fix it. He would then crawl underneath the car and jack it up or strip it down and often with some help from Lee would fix whatever was the problem. As we got older and money became less of an issue we bought newer cars that didn’t have the clunks and grinds problems but Ian could still do the spark plugs/oil changes/tyre checks/oil verification etc etc. Not now he can’t as his eyesight cannot see the levels on the dipsticks, he doesn’t have any strength in his arms to do wrenches and if the car needs jacking up then forget it.  I need a car that is

• Comfortable
• Automatic because Ian’s left leg is rubbish even if he is having a good eye sight day
• Reliable
• Easy ride height for Ian to get in and out of
• Economical on fuel and insurance
• Boot space big enough for wheelchair and a weeks shopping
• Room for passengers and a wheelchair
• Garage costs minimal
• Something we can afford to buy and run
• A colour I like…red

So my image of me in a little sports car with the roof down singing along to Bat out of Hell  by Meatloaf or Hello by Neil Diamond have been well and truly put to bed. Still if we do win the lottery guess what I’m going to be buying

Car stuff,  just another  thing I used to take for granted that Ian would do and I had no need to worry about it.

Debbie

You have no idea what a trial it has been to get this blog going. I will not bore you with the details just suffice to say it has taken me hours and I still haven’t got it quite how I would like it. However I like it more than the myspace one so it will do….for now.

I intend to blog at least once a week maybe more and I am going to share my life with Ian’s Multiple Sclerosis hopefully creating a better understanding of what life is like for us.

If you haven’t already read you may like to read my article at www.dandia.net/iansms.html

I look forward to meeting you

Debbie