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MARTEN'S PROGRESS

Marten's story and his struggle with cerebral palsy
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Wednesday 23rd May 2012


COLD TURKEY!

It's now exactly one week since Marten came off his muscle relaxing drug Nitrazapam. The drug was first prescribed for a two weeks "trial" period last October when Marten's movements were becoming eratic. An initial 2mls dose, twice a day, quickly became 3mls, twice a day. As with all drugs of this nature the body quickly becomes accustomed to the effects and greater dosages are required to try and maintain the effect!

The "normal" pathway for someone with Marten's cerebral palsy severity would result in the Nitrazapam being replaced by a stronger drug called Baclofen. Once this became ineffective as an orally administered drug many CP sufferers find themselves with a pump surgically inserted in their body and the baclofen injected directed into their spine (the idea is to deliver a lower dosage more directly). 

But brave Marten is bucking the trend. Instead of going onto the next drug, or increasing his dosage, Marten has been slowly reducing his Nitrazapam drug since he went onto his ABR therapy. He received his last 0.1mls last Wednesday morning and has had no muscle relaxants since! The beneficial effects of his ABR treatment means that Marten is no longer suffering the strong spastic muscle spasms which used to see him up all night crying in pain and which resulted in wild, uncontrolled movements of his arms and rigid extension of his legs.

While there have been withdrawal symtoms these, so far, have been largely unsettled sleep and being more irritable than usual. In fact, the withdrawal symptoms have been going on for a few weeks as the drug was reduced down to prepare for coming off altogether. Luckily, mum works in the drug addictions field and is well used to these problems. She says it can take 6 - 8 weeks before the symptoms cease completely. Importantly, by then, Marten will be free of the downward cycle of stronger and stronger drugs, followed by surgery, that most of his fellow severe CP sufferers have to endure.


CONSULTANT VISIT

After a false start the previous week, Marten got to see his Child Development Consultant last Friday 18th May at Paisley's RAH. Now, it's fair to say that Dr C was more than a little sceptical when Marten's parents first mentioned the ABR programme. She was asked to keep an open mind and to judge the therapy by what she could see before her and to be fair that's what she has done.

Well, she was very pleased. She felt that Marten was much, much happier and relaxed than previous times she had seen him; that he was taking a keen interest in what was happening around him and interacting with people; that he was starting to examine his fingers, and that his uncontrolled movement had substantially reduced.

All this leaves doctors such as Dr C with a big problem. if it is proven that ABR is far more successful at treating CP patients like Marten - what do they do about it? Currently, ABR is not recognised as a treatment in this country and is not available on the NHS. Consequently, parents wishing to place thier child on the programme have no alternative but to pay for it themselves and to travel to Belgium 3 or 4 times a year for ongoing assessment and further training so that they can successfully deliver this home based therapy. And we're the advanced country - makes you think!

SUMMER AT LAST

Surely today represents the first day of summer - eventually. Well, Marten and Erik sure made good use of the sunshine. Earlier tonight Marten posted some photos on his Facebook site. Don't worry if you're not on Facebook you can still see them by following the link. (these photo will eventually be available on this site)

FACE BOOK

Why not become "friends" with Marten on Facebook? That way you can keep up to date with what's being going on with Marten on a daily basis. If you don't have an account - open on. It's free and it's easy to use. Look for Marten McFee.

OUTSIDE TRACK
any thanksr
Many thanks to my good friends Loudon and Brenda Temple, the guys who make up "Outside Track", all at Brookfield Knights and everyone else who went along to the Kilbarchan Old Library Centre last Thursday evening. At these events there is always a raffle at some point in the evening, the proceeds of which are given to a good cause - this time it was Marten's Progress. A total of £146.00 was raised. Why not get along to the one of the next music nights which are also going to Marten's Progress - see the "Events" page for more details.





Saturday 12th May 2012


WHAT A TEAM!
(a special message from Marten)

The support group at Marten's Progress have been working wonders this last week. With the help of very generous people like you they've been putting together a whole programme of events for the rest of the year. So far we have dates for: the Ben Lomond sponsored walk, 2 music nights in Kilbarchan, 1 music night in Brookfield, we also have a competitor in the Lake District "Total Warrior" 10K, and we hope to have the date of the Zumbathon confirmed in the next few days, plus a Ladies Night later on in the year. Phew! - I'm exhausted just thinking about it!

Now, with all that work going on we have to maximise the full potential of these events. This Thursday (17th May) "Outside Track" are appearing for my benefit at the Old Library Centre in Kilbarchan, courtesy of Loudon and Brenda Temple and Brookfield Nights. Tickets are £12 and available from the venue 01505 706070. Go on, have a night off and relax with some top quality entertainment - you deserve it!

There's also a huge effort going into the Sponsored Walk up Ben Lomond. So far, more than 20 people have confirmed that they are going to do the walk on Saturday 16th June and even more have agreed to collect extra sponsorships. This is where you can help to make a good event even greater! Check out the Events section; you're sure to find ways to help out - some without having to leave your armchair! And, if you can't be bothered with any of that, why not think of making a donation to my fund? Whatever you can afford, every contribution is appreciated and every penny will be spent wisely. Our administration costs are zero - everyone at Marten's Progress is a genuine volunteer.

You'll find details of all my events in the Events section and also in the Calendar sections of this website.


 FACEBOOK

While they've been working hard I've been putting myself about on Facebook. If you want to know what's happening on a day to day basis, simply log on to Facebook and sent a message to me Marten McFee asking to be my friend. 


WHY ABR?

Many of you have been asking why ABR? Here's why. ABR's objective is:

  • Restoration of motor functions in a spontaneous way through the rebuilding of the musculoskeletal structure and the restoration of bio-electrical signals flowing between the muscles and the brain.

ABR's main objective is to restore the motor functions in brain injured people. However, ABR distinguishes itself from all other approaches, conventional as well as alternative ones, by one critical factor: While all tend to focus on the functional training of a brain injured person - attempting to achieve the optimal function despite the poor structural qualities of the musculoskeletal system - ABR asks an altogether different question: "How to normalize the musculoskeletal system?"


ABR is the only approach that does not focus on "managing" the child's limitations. Its aim is "reversing" poor mechanical integration in order to permit spontaneous development of movement.


While it is commonly believed that a brain injured person needs specific training of his/her motor function - trying to make "better use" of a structurally deficient musculoskeletal system - ABR shows that true biomechanical structural improvement of the musculoskeletal system automatically converts into motor function progress, eliminating any need for specific training to perform motor tasks. Motor function develops as a "spontaneous" result of structural normalization.


Take a look at the 3 videos from our friends at ABR Belgium at the foot of the page called "Cerebral Palsy". If these children had lived in this country, or their parents had never heard of ABR, they would never have been able to achieve the progress that they have.


Marten











Tuesday, 1st May 2012

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Marten is pleased to announce that the sponsored walk up Ben Lomond has been organised for Saturday 16th June. We are looking for as many participants as possible, however, there are a number of ways you can help if you don't think you can make it up  -  and back! Click on "Ben Lomond Sponsored Walk" above for full details.

FACEBOOK

As many of you already know Marten is a dab hand at this technology stuff. Today, between feeds, nappies and a visit to the hospital he has set himself up on Facebook. This is just another way of keeping in touch with events and Marten's day to day progress. If you're interested in becoming one of Marten's Facebook friends just log into Facebook and look for Marten McFee or search for martensprogress@virginmedia.com. 

VISIT TO THE PANDA CENTRE

Today marked the latest in Marten's long line of visits to the Panda Centre. No, it's not the latest exhibit at Edinburgh Zoo but Childrens' Services at the Royal Alexander Hospital. Anyway, to cut a long story short, Marten's Specialist Health Visitor was most impressed with his progress to date. So was one of his speech and language therapist and his former physiotherapist who happened to be there and possed in to see how he was doing. Next week he sees his Paediatric Consultant who also wants to see how he is doing. To date Marten's progress has been an eye-opener for a number of professionals unused to cerebral palsy children making any sort of recovery. Let's hope this continues and the sceptics become convinced. Maybe then other parents of cerebral palsy children will get to know about the alternatives which exist to their child being prepared for a life in a wheelchair with the painful surgery and highly addictive drugs current NHS treatment involves!

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OLD VIDEOS
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Marten has received a number of requests for some of his old videos from when he was a youngster! We intend creating a library of Marten's old videos on this site and also incorporating videos composed by Leonid Blyum (that are not available on his website) which give more information about ABR. For now here is an old video from Yorkhill, shortly after marten has heart surgery. The title of the video says it all.