Welcome To Tims Blog
UPDATE January 1st 2009 Happy New Year!
UPDATE March 6th 2009 9 weeks seem to go past in a flash when you are enjoying life and so it has been,
UPDATE FRIDAY 17TH APRIL SCROLL DOWN AFTER THE MARCH UPDATE
UPDATE 31ST DECEMBER 2009 TWO IMPORTANT DEVELOPMENTS, A SECOND EMG TEST ON MY FEET ( NO REAL POSITIVE NEWS ) AND HYPERBARIC TREATMENT ( REALLY GOOD NEWS AND PROGRESS) SCROLL ON DOWN...............................................................................................
mARCH 6TH The real truth is that I have been having trouble trying to get to grips with the new technology involved in the publishing and saving of my new blog since the creation of new website and breaking my blog down into manageable pieces..................... several times I have updated my blog, no problem with the writing but then when I have tried to save and then publish I have pressed the wrong button and lost it all, very frustrating. However thank you Charles ( scientist Doctor ) for all your help. Lets hope that when I press the button this time, I press the correct button.
so back to the 9 weeks in a flash and this is really true. I am in really good shape, physically and mentally......... the mental bit first as I have at last after well over two years finally come to terms with all the trauma of the statins, adverse drug reactions, jelly legs, vertigo attack ( cerebellum stroke ) and then the numbness in my legs and feet and the CIDP diagnosis. IIf you have read parts of my writing you may understand my frustrations, my anger, not knowing what is going on with the body, not perhaps being looked after as well as one might expect by the medical profession. ( there is still a huge feeling in the medics that statins are the best thing since sliced bread, hence all people over 40 whether you are ill or not, are to be be offered statins as a prevention against having a possible stroke or heart attack . There is no doubt that they are very effective in reducing cloresterol I am not even able to write the word....BUT at what a cost in my case and many others with BAD side effects....just tap into your search engine statins and side effects and start digging,,,,,,,, www.spacedoc.net is another story that will make sure you are fully aware before you pop a statin into your mouth.
anyway enough of that, I am over all the trauma, I have forgiven anyone that I should give, I no longer have tears that used to well up in my eyes when talking about statins and my problems AND I AM NOW FULLY FOCUSSED ON GETTING BETTER.
thanks to my new medical team,( complimentory medecine ) and I thank them very much for their very informative and helpful letters, I now know so much more about what has happened to me and my present condition, I have peripheral neuropathy, this is a mixture of damage to the nerve itself ( axonal neuropathy ) and damage to the lining of the nerve ( demyelinating neuropathy) all of this suggests an inflammatory neuropathy. Treatment should be immune suppressant medecines such as steroids. but there are risks attached.
THE BRILLIANT NEWS IS THAT THANKS TO THE RECENT EMG tests and in spite of the abnormalities on the electrical tests ( each test can produse a 10% variation on each test ? ) if ANYTHING MY PROBLEMS SEEM TO BE IMPROVING AND THUS THE IDEA NOW IS NO MORE TESTS, NO STEROIDS AND JUST WAIT WHILST TIMS TREATMENTS SEEM s TO BE WORKING.
thus I have a huge grin on my face, I have been in positive recovery since january 2007 over two years of have work, daily exercises on my feet, legs and core muscles, walking, weekly yoga, pilates, I now have a static bike,, twice a week 18 holes of golf, I must be going in the right direction. Remember that September 2006 I was just able to walk 100 yards helped with two sticks, I was on sticks for 6 months and am still improving.
I am writing this at 21.00,March 6th after 16 holes of golf and a session in the hydrotherapy pool at Treliske hospital. brilliant. My pedometer says I have walked 19080 steps which is 11.44 kilometers which is just under 8 miles..... which would you prefer... at the moment I will vote for my exercise regime and no drugs !
so please keep smiling.. I am.....my writing will be less frequent as I am so busy getting better but if you are on statins, having any side effects at all and you would like to talk to someone, please telephone, the number is at the start of this blog. warning I am very biased, ! but I am very happy to talk
ps the isles of scilly are a great place for a relaxing holiday and I just happen to know about some holiday flats with sea views www.islesofscillyholidayflats.co.uk
UPDATE FRIDAY 17TH APRIL
another 6 weeks, I have good news and bad news. GOOD NEWS ..... Since I am a positive type of chap, and I am in positive recovery, I have to say that physically I am still in good shape, I actually enjoy my regular routine which as a rule goes like this.
Monday 0815 morning on the golf course, pm I do about 30 minutes exercises concentrating on my feet and anklesTuesday am my full exercise routine at home about 90 minutes.including if I can 15 minutes on exercise bike, I have to say that I am still not fully motivated on the bike I must work harder at this. no wonder there is so much second hand kit for sale. motivation is hard.
Wednesday am 2 hours yoga and pm i hour pilates
Thursday same as Tuesday
Friday am Golf as monday but pm I have 1 hour in the Hydrotherapy pool doing leg and feet exercises in the warm water, it is brilliant and I am lucky to be a member of the local voluntarily run Hydro club, ( we pay for this )
Saturday am home exercises either the short or long version depending how I feel
Sunday am we try to go out for an hours walk round the Woodland walk at the nearby Trellisisck gardens. I do this using my walking poles and can usually manage it in 65 minutes. ( pre statins it was 56 minutes and when I first started to walk again it was 90 minutes. ) this is indication of how much I have improved.
exactly one week ago, I woke up in the night in a start because I could hear what I thought was a gas leak, ( we have no gas in the house ! ) it was a real HISSING noise all around me. So I got up to investigate, waked up Angela ( she was not pleased ) The result, no gas leak, no problem at all except the hissing was in my head....BOTH EARS A CONSTANT HISSING NOISE.. TINNITUS
this was Easter weekend, so I finally visited the Doctor last Tuesday. I have been prone to my ears filling up with rubbish and then every 6 months being syringed out after I have put in my best olive oil to loosen the wax.
So I am off on this coming Monday to have this done and then a further inspection, at the moment no sign of any infections.
So if you want to add more minor local difficulties to your life, look at TINNITUS on google, you will find lots of information, is no cure but you will also be able to listen to some of the sounds sufferers have to listen to 24 hours a day, Some of these sounds are terrible , so the good news in this department is that my hissing is only a minor irritation
So far this is day 7 of my new hissing regime, and it is bearable especially if I listen to some back ground music by way of a distraction. IIf I can survive and come through my STATIN nightmare, then I am sure I can deal with a little hissing. ! watch this space,
So if anyone reading this has a STATIN or a HISSING problem and you have some ideas to help, please email or telephone me , I am still smiling !
keep smiling tim
some 6 years ago when we agreed to buy our present house , our next door house was painted grey. A few weeks later when we moved in it was painted a fine ecological GREEN ! and it was fairly striking. NOW 6 years later we do not even notice the green > it just shows that as time goes by, you can adapt to anything.... so I am sure it will be with the hissing. Of course, it might just be a simple infection in the ears and soon I will be hissing less ! I will advise in 6 weeks.
Sept 2nd 2009
time goes by quickly when you are having fun ! I am still in positive recovery , it is not easy and there is no magic wand. it is just hard graft with the exercises but the really important news is that I am moving forward
31ST DECEMBER 2009 FINAL UPDATE OF THE YEAR.
IT IS NOW 3 YEARS AND 7 1/2 MONTHS SINCE MY STATIN DISASTER AND EXACTLY 3 YEARS SINCE MY BIG TOE MOVED AND MY RECOVERY STARTED.
so my current situation is positive, I have improved slowly, little by little, agonisingly slowly month by month which is fabulous. thanks to my continuing exercise regime , my body and core are so much fitter.
My legs from below the knee downwards are still damaged but I have made real progress thanks to the fitness and strength, THIS IS THE KEY IN MY CASE , IGNORE THE DAMAGE AND CONCENTRATE ON FITNESS ON A DAILY BASIS AND IT IS AMAZING HOW ONE IS ABLE TO DO MORE AND MORE. I HAVE INSERTED A NEW FITNESS AND RECOVERY SECTION IN MY BLOG. CHECK IT OUT.
SO BACK TO THE TWO MOST IMPORTANT HIGHLIGHTS FOR 2009.
1) EMG TEST Treliske Hospital Truro. February 17th this elctrical test is the equivilent of an MOT test on the condition of my legs and feet, problem is that the results have a 10% variation up or down, so they are really only a guide. This time a very nice smiling Doctor conducted the tests and gave me the results.
results,,,,,,,,,,,,,,, some of the nerves in my feet were slightly better, others were slightly worse.
this time more damage was shown up in my arms, the good news is that I am not aware of this
so the smiling doctor told me to carry on with exactly what I was doing,,, exercises etc
not to worry and really because the tests show this
variation, they really do not mean very much
The following letter from the Specialist noted some improvement and confirmed that the only alternative was more drugs and he was sure that I would not wish for this....... quite correct. I do not now have a flu jab or swine flu jab of any sort.
2 ) HYPERBARIC TREATMENT
i AM A MEMBER OF THE ROTARY CLUB OF TRURO and for the last few years we have been raising money for the new M.S. centre being built at Hewas water half way between Truro and St Austell. and in an August meeting we presented a cheque of £ 1000.00 to the Fund Raiser and she gave us an inspiring talk about
the new MERLIN centre for the treatment of M.S. it appears that MS attacks the nerves in the legs of MS sufferers and that Hyperbaric treatment helps with this , Hyperbaric is oxygen treatment in a diving chamber and we are incredibly lucky to have such a treatment available in Cornwall.
Google in MS and Merlin centre for more details ,,,,,,,,,,,,, the
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