18 days left ..... EEEEK where did those weeks go ?
I feel like there's so much more that I should have done in the run up to the treatment. The butterflies in my stomach seem to be getting more active every day, but I'm excited too, I just want to be in control of the MonSter rather than it being in control of me.
So as part of my preparation it's only right that I ensure I'm not Vitamin D deficient so my butterflies are coming to Portugal with my husband and I so I can get some sunshine, a bit of a tan (well weak tea colour then peel and go back to my natural state of pale and spiteful) - I have a feeling my suitcase might come under some scrutiny as it travels with the vast quantities of vitamins and minerals that will be in there ..... it's going to sound like a rattlesnake with the shakes as it's moved around :-)
We have a wonderful villa with a solar heated pool, Jacuzzi, pool table and beautiful views of the Portuguese countryside which is far too big for the two of us, but hey we don't have to clean it
It gives me 8 days to recover from the holiday before treatment but I think the rest, sunshine and quality time with the other half will do more for me physically and emotionally on the run up to treatment than all the vitamins and Oxygen Treatments in the world - we so need a break from reality even if it's only a week.
MS update - I have recurring 'spaghetti leg' every few days but I've learnt to notice when it starts happening so I've not tipped over and used my face to break my fall recently. The numbness in my body is no worse than usual and electro shock hand is the same. The brain fog, physical weakness, limb fatigue and aching all much improved while I'm feeling the benefits of Oxygen Therapy. I've now worked out each treatment lasts well for 4 days but day 5 they all come back, so I'm doing treatments 5 days apart so that on day 5 I can assess if there's any overall reduction before the next treatment.
Feeling really positive, I'm going to Portugal WOOOHOOOOOO
Wednesday, 29 April 2015
Monday, 27 April 2015
Pre treatment holiday WOOHOO
DOGS SORTED !!!!
Found a wonderful lady who boards dogs at home, tomorrow night we book our holiday for a week and we fly out Saturday .........
If I pick up anything I will have 10 days to get right before treatment and lovely free vitamin D in the sunshine. We so need this !!!!
So excited I couldn't wait to post xxx
Found a wonderful lady who boards dogs at home, tomorrow night we book our holiday for a week and we fly out Saturday .........
If I pick up anything I will have 10 days to get right before treatment and lovely free vitamin D in the sunshine. We so need this !!!!
So excited I couldn't wait to post xxx
Post weekend update
Friday was physiotherapy day with a lovely lady who I have to say has a curiously evil streak. In my not so knackered state I'm a bit of a rarity in that all but one of the Pilates exercises were ones I was familiar and comfortable with. There were some 'sensitisation' tests which involved me being 'touched' with objects and materials. Some of the tests were ones I could work out what I was being touched with the others were just weird :-O I completely failed the can you pick up paperclips from a tub full of marbles test with my left hand but passed it with my right - to be expected really. I did a 3.2k ride on the vertical bike which I enjoyed but tired quickly on and 10 minutes on the rotational balance machine which showed the profound weakness in my left leg - again not a surprise.
I got the call on Saturday morning to say there was a spare seat in the 11:45 Decompression Chamber for my 2nd Oxygen therapy of the week. Rather glad that Friday night had been a quiet one and that I was up and not hungover. The Saturday crowd in the tank are all very familiar with each other, the conversation was flowing and I finally got to meet the man who had HSCT treatment a few weeks ago. He's doing really well and reported happily that his pubes are growing back :-) (as I said VERY familiar with each other in that tank :-)..)
I've felt great all weekend, the random falling asleep everywhere was much reduced and I've had really good energy levels and a clear head which has followed through to this morning, with the sun shining am my spirits on a high.
We have had a bit of a holiday FAIL in that we have a couple of places we are interested in booking with James Villa's one in Portugal and the other in Spain .... unfortunately leaving Saturday now looks like it won't be an option as it's a bank holiday weekend and we can't actually get the dogs into Kennels as they're fully booked :-( Plan B is to shift the holiday by a few days but it would mean flying closer to my treatment date which I'm not entirely comfortable with, or rent an RV, throw the dogs in it for a week and go down to the south coast with them and just bimble around.
Decisions decisions, I'm sure it will all work out in the end
I got the call on Saturday morning to say there was a spare seat in the 11:45 Decompression Chamber for my 2nd Oxygen therapy of the week. Rather glad that Friday night had been a quiet one and that I was up and not hungover. The Saturday crowd in the tank are all very familiar with each other, the conversation was flowing and I finally got to meet the man who had HSCT treatment a few weeks ago. He's doing really well and reported happily that his pubes are growing back :-) (as I said VERY familiar with each other in that tank :-)..)
I've felt great all weekend, the random falling asleep everywhere was much reduced and I've had really good energy levels and a clear head which has followed through to this morning, with the sun shining am my spirits on a high.
We have had a bit of a holiday FAIL in that we have a couple of places we are interested in booking with James Villa's one in Portugal and the other in Spain .... unfortunately leaving Saturday now looks like it won't be an option as it's a bank holiday weekend and we can't actually get the dogs into Kennels as they're fully booked :-( Plan B is to shift the holiday by a few days but it would mean flying closer to my treatment date which I'm not entirely comfortable with, or rent an RV, throw the dogs in it for a week and go down to the south coast with them and just bimble around.
Decisions decisions, I'm sure it will all work out in the end
Friday, 24 April 2015
Great news for people with progressive MS - Pass the Biotin please
We have to say Merci to those nice people at MedDay, today they are releasing the MD-1003 Phase III trial results for the 'Super-Biotin' treatment
http://multiplesclerosisnewstoday.com/2015/04/23/phase-iii-study-experimental-ms-therapy-meets-primary-endpoint-results-presented-ann-meeting/
MD1003 may have two beneficial effects: 1) increasing myelin, the fatty nerve-insulating substance that is destroyed in MS and 2) increasing energy to nerve cells so that they can communicate more effectively. Researchers previously studied the drug in what is called “a proof of concept” study. A total of 23 people with primary and secondary progressive MS received the drug in that initial trial, and 90% of subjects showed some clinical improvement over time. Results for that study appeared in the Journal of Multiple Sclerosis and Related Disorders.
News that Myelin can potentially recover is great, the loss of the 'translation matrix' between our nerves and brain results in the most bizarre and debilitating sensory and neuropathic pain. Just being able to 'feel' things or feel things normally would make a massive difference to many MSers lives. To not have constant pain and discomfort is something we aspire to and this may be a step in the right direction.
So how much do you need?
It could be a long time before it actually gets approved for patients in countries around the world, so in the interim do we all ramp up our consumption of Biotin ? In Europe Biotin is available readily in high dose form, in the UK if you're a Costco member you can get 250 x 5,000ug but you need to munch down on somewhere between 18 and 30 of them a day to get close to the volumes of biotin provided by the trial.
What does it do for us?
Biotin is sold as a supplement for Healthy shiny strong Hair and Nails and anti aging, so if nothing else happens at all, you'll have lovely nails, a long shiny coat like a spaniel and just might find a cure for baldness and like Benjamin Button we will turn back the years and look 21 again :-)
The best news is this appears to be effective for people with progressive MS, goodness knows those with progressive must be thoroughly fed up of the many treatments released in recent years which are only for those with Relapsing Remitting MS ...... how very unfair, us RRMSers get some respite, but for a person with progressive it goes on and on without end ..... cross your fingers guys and gals, perhaps not for much longer
If your Myelin can recover and that translation layer can begin to function more normally then perhaps this can offer a relief from the Neuropathic pain and sensory disturbance that Myelin depletion causes, if it can hold back the tide stop things getting worse then that's great news.
Why should we believe?
Because if we don't have hope, then what hope is there for us at all ? If we don't grab that hope at every opportunity, shout it from the rooftops, inspire and support each other and keep encouraging the likes of Med-day and others to keep trying because WE believe they can keep finding ways to beat back, stop or kill the MonSter.
After all if we don't believe why should they ?
http://multiplesclerosisnewstoday.com/2015/04/23/phase-iii-study-experimental-ms-therapy-meets-primary-endpoint-results-presented-ann-meeting/
MD1003 may have two beneficial effects: 1) increasing myelin, the fatty nerve-insulating substance that is destroyed in MS and 2) increasing energy to nerve cells so that they can communicate more effectively. Researchers previously studied the drug in what is called “a proof of concept” study. A total of 23 people with primary and secondary progressive MS received the drug in that initial trial, and 90% of subjects showed some clinical improvement over time. Results for that study appeared in the Journal of Multiple Sclerosis and Related Disorders.
News that Myelin can potentially recover is great, the loss of the 'translation matrix' between our nerves and brain results in the most bizarre and debilitating sensory and neuropathic pain. Just being able to 'feel' things or feel things normally would make a massive difference to many MSers lives. To not have constant pain and discomfort is something we aspire to and this may be a step in the right direction.
So how much do you need?
It could be a long time before it actually gets approved for patients in countries around the world, so in the interim do we all ramp up our consumption of Biotin ? In Europe Biotin is available readily in high dose form, in the UK if you're a Costco member you can get 250 x 5,000ug but you need to munch down on somewhere between 18 and 30 of them a day to get close to the volumes of biotin provided by the trial.
What does it do for us?
Biotin is sold as a supplement for Healthy shiny strong Hair and Nails and anti aging, so if nothing else happens at all, you'll have lovely nails, a long shiny coat like a spaniel and just might find a cure for baldness and like Benjamin Button we will turn back the years and look 21 again :-)
The best news is this appears to be effective for people with progressive MS, goodness knows those with progressive must be thoroughly fed up of the many treatments released in recent years which are only for those with Relapsing Remitting MS ...... how very unfair, us RRMSers get some respite, but for a person with progressive it goes on and on without end ..... cross your fingers guys and gals, perhaps not for much longer
If your Myelin can recover and that translation layer can begin to function more normally then perhaps this can offer a relief from the Neuropathic pain and sensory disturbance that Myelin depletion causes, if it can hold back the tide stop things getting worse then that's great news.
Why should we believe?
Because if we don't have hope, then what hope is there for us at all ? If we don't grab that hope at every opportunity, shout it from the rooftops, inspire and support each other and keep encouraging the likes of Med-day and others to keep trying because WE believe they can keep finding ways to beat back, stop or kill the MonSter.
After all if we don't believe why should they ?
Wednesday, 22 April 2015
You seriously have to try the gas chamber if you have MS
I know I'm starting to sound like a broken record, but I've had my Oxygen Therapy treatment today and if really is having an absolutely amazing effect on me. My head is clear again (well as it ever gets I suppose), the heavy limbs has gone, the all over ache that made me feel beaten up also gone. I know it will only last a few days, but that's okay my next appointment is already in the book.
26 days to go now until Lemtrada starts, and if I can keep the oxygen treatments and everything else going I think if it started with me feeling like I do today then I think it will go really well.
Feeling very positive right now .... Probably all the air in me 😀😀
26 days to go now until Lemtrada starts, and if I can keep the oxygen treatments and everything else going I think if it started with me feeling like I do today then I think it will go really well.
Feeling very positive right now .... Probably all the air in me 😀😀
Tuesday, 21 April 2015
Addicted to the gas chamber ?
It's been 5 days since my last 'gassing' and the fog in my head is still holding back but by heck does the rest of me know what hit it ..... big men with baseball bats. The fatigue is back in full force bringing with it the almost narcoleptic ability to simply fall asleep anywhere and at any time. Everything hurts as if I've done some extremely intense exercise - playing Rugby springs to mind (I remember the bumps and physical exertion and all over bruised feeling of that from when I was a child)
I'm sure this is just how I've felt naturally for a long time thanks to MS but it's quite a shock to look it directly in the eye and recognise it for what it is when it arrives in full force rather than the slow stealthy sneaking up on you unawares. I need to ration my energy correctly, this is a learning process, and with 26 days to go to Lemtrada I need to learn quickly and then adapt post treatment.
On a bright note Gareth has had annual leave approved for early May (I'm still waiting for mine to be approved) I would like to get a week away somewhere warm and just chill out before treatment starts, not entirely sure where we would go, perhaps somewhere in Europe rather than the USA or Asia where jetlag would probably do more harm than good.
More oxygen tomorrow 33ft this time, looking forward to feeling great again :-)
I'm sure this is just how I've felt naturally for a long time thanks to MS but it's quite a shock to look it directly in the eye and recognise it for what it is when it arrives in full force rather than the slow stealthy sneaking up on you unawares. I need to ration my energy correctly, this is a learning process, and with 26 days to go to Lemtrada I need to learn quickly and then adapt post treatment.
On a bright note Gareth has had annual leave approved for early May (I'm still waiting for mine to be approved) I would like to get a week away somewhere warm and just chill out before treatment starts, not entirely sure where we would go, perhaps somewhere in Europe rather than the USA or Asia where jetlag would probably do more harm than good.
More oxygen tomorrow 33ft this time, looking forward to feeling great again :-)
Sunday, 19 April 2015
Sunburn, gardening and BBQ
I have been full of energy since starting the oxygen therapy and with the sunshine blazing it seemed like a great day to get loads done, needless to say today I feel like someone beat me repeatedly with a baseball bat everything hurts ..... Even bits I didn't abuse in some way hurt - I really need to learn how to ration my energy
We had some ornamental stones which were down the sides of the patio in our back garden that our young dog has been playing catch with and trying to eat. We needed to be collect them up and transfer them to the front garden before Winston ended up at the vets with a small rockery being removed from his insides.
To make things easier, I sat down and handful by handful popped them into an empty planter and then let Gareth carry the heavy containers back and forth to the front. He also regularly brought me squash as the sitting thing was clearly hard work. By the time I was done, my backside had gone to sleep, my legs weren't too bad, my arms had turned into silly string and I had to rock myself backwards and forwards like an upside down insect to actually get up off the floor.
Gareth was in charge of mowing the lawn which proved to be a little harder than expected as Winston decided the lawn mower was evil and clearly a threat to life as we know it and he had to vanquish it at all costs by biting at the lawn mower and throwing himself at it. Not wanting that vet bill either I walked both dogs to the park for a chasing balls and run. in hindsight I should have sat down with a cup of coffee.
Football was next up, our nearest local team (well half decent one) Reading v Arsenal in the FA Cup semi final at Wembley, we hadn't been able to get tickets but it was on the television - score points on
energy saving by watching from the sofa, unfortunately up against a Permier league team with a lot more money and a few players in their squad who individually cost more than our own team in total, Reading lost in extra time gutted, but they certainly didn't disgrace themselves in the process to well done URZ
Evening came and the BBQ was dusted off for the first outing of the year .... As usual it took a couple of attempts to actually get it going properly. I had prepared stuffed pork tenderloin, halloumi wrapped in bacon, some sausages and fancy bread with caramelised pineapple and chocolate and Malibu sauce to dunk it in - i started all that at 8am so that it was done in case I was short of energy later so I am counting that as energy planning win for me
I read for a while after the BBQ but then like the narcoleptic I tend to be these days I slid down on the sofa, used Winstons hip as a pillow and drifted off to sleep ..... Dogs are really quite comfortable as pillows and our two are quite happy to have snuggles. I know I woke up at 03:00 and decided to go sleep in the bed, Gareth was still saving the world as part of part of the Counterstike Global Offensive online 'thing' .... Big kids shoot stuff with a keyboard and mouse.
It's Gareth's birthday today, I was torn between telling him to get up so I can give him his presents and have a nice breakfast with him or letting him have a lie in because it's his birthday ..... Patience isn't one of my finer qualities so I took him a double espresso took him for lunch and now settles back on the sofa hoping that Newcastle United (my team) beat Tottenham Hotspur (his team) this afternoon.
I think I might just stay here for the rest of the day, snuggle my man and see how much of my Easter egg I can get through because I don't have the energy for much more.
28 days to go :-)
We had some ornamental stones which were down the sides of the patio in our back garden that our young dog has been playing catch with and trying to eat. We needed to be collect them up and transfer them to the front garden before Winston ended up at the vets with a small rockery being removed from his insides.
To make things easier, I sat down and handful by handful popped them into an empty planter and then let Gareth carry the heavy containers back and forth to the front. He also regularly brought me squash as the sitting thing was clearly hard work. By the time I was done, my backside had gone to sleep, my legs weren't too bad, my arms had turned into silly string and I had to rock myself backwards and forwards like an upside down insect to actually get up off the floor.
Gareth was in charge of mowing the lawn which proved to be a little harder than expected as Winston decided the lawn mower was evil and clearly a threat to life as we know it and he had to vanquish it at all costs by biting at the lawn mower and throwing himself at it. Not wanting that vet bill either I walked both dogs to the park for a chasing balls and run. in hindsight I should have sat down with a cup of coffee.
Football was next up, our nearest local team (well half decent one) Reading v Arsenal in the FA Cup semi final at Wembley, we hadn't been able to get tickets but it was on the television - score points on
energy saving by watching from the sofa, unfortunately up against a Permier league team with a lot more money and a few players in their squad who individually cost more than our own team in total, Reading lost in extra time gutted, but they certainly didn't disgrace themselves in the process to well done URZ
Evening came and the BBQ was dusted off for the first outing of the year .... As usual it took a couple of attempts to actually get it going properly. I had prepared stuffed pork tenderloin, halloumi wrapped in bacon, some sausages and fancy bread with caramelised pineapple and chocolate and Malibu sauce to dunk it in - i started all that at 8am so that it was done in case I was short of energy later so I am counting that as energy planning win for me
I read for a while after the BBQ but then like the narcoleptic I tend to be these days I slid down on the sofa, used Winstons hip as a pillow and drifted off to sleep ..... Dogs are really quite comfortable as pillows and our two are quite happy to have snuggles. I know I woke up at 03:00 and decided to go sleep in the bed, Gareth was still saving the world as part of part of the Counterstike Global Offensive online 'thing' .... Big kids shoot stuff with a keyboard and mouse.
It's Gareth's birthday today, I was torn between telling him to get up so I can give him his presents and have a nice breakfast with him or letting him have a lie in because it's his birthday ..... Patience isn't one of my finer qualities so I took him a double espresso took him for lunch and now settles back on the sofa hoping that Newcastle United (my team) beat Tottenham Hotspur (his team) this afternoon.
I think I might just stay here for the rest of the day, snuggle my man and see how much of my Easter egg I can get through because I don't have the energy for much more.
28 days to go :-)
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