Parkinsons

[joseph connor]

i havent posted now for a few months because of a worsening of my condition , the tremors stop me from typing , i have been reduced to shuffling round the house and garden ,and getting rooted to the spot , bloody annoying when your legs wont do as they are told lol , but that isnt why i am posting today lots of people are worse off than me . No , three weeks ago i had to go to the Walton Neuroe Center in Liverpool for my six monthly visit , while in the waiting area , a nurse gave me a form to fill in with about thirty questions on , to which i knuckled down and watched the wife fill in ,and gave it back to the nurse who took it into the treatment room , ten minutes later we were called in out of turn i am sure , after all the usual tests and questions the Doctor said to me with a beaming smile ,( i had told him that my mediication was getting less and less effective ) that there was a new drug that had just finnished clinicel trials and the results were very promising , it involved a few hundred people over fourteen months , nobody had had any bad side effects only minor ones , all had at least a twenty five per cent improvment , would i be interested in joining a small group of people to carry on the tests ?,, i jumped at it , so after signing half a dozen forms i would start in a couple of days , one capsule at night before bed . The fiirst morning woke , got up , showered , dressed , made the bed , in a quarter of the time it normaly takes me ,i had NO tremors , NO shuffling , NO rooting to the spot ,NOTHING , and thats how it was for three blissful days , and now exept the tremors came back but not as bad , 50% less, the fly in the ointment is they are veryexpensve and even i may not get them after the six months , buut at the moment i am just enjoying life again . JOE.

[j.sabourn]

Joe sorry to hear about your problems and hope the new drug will make life easier. I know condolences are easy enough to say and you are praying for workable results. A few lines on an email I received the other day might make those condolences easier to say....May your troubles be less,
May your blessings be more,
May nothing but happiness come through your door.
Keep hanging in there, all life with whatever gets thrown at us is worth hanging on to. Best regards JWS.

[John F Collier]

Hang in there Joe, if they have developed the one you have now, you never know what what other breakthroughs they
can come up with. All the best JF

[joseph connor]

Thank you Marion , i appreciate that , the Doctor just didnt know , he said it was too early , but he would do all he could to get them for me , makes you think, what other drugs are out there that could change peoples lives but cost too much ,but a footballer could blow ten grand on a night out . The drug is called ONGENTYS . JOE.

[j.sabourn]

I pay over 40 dollars a month for non recreational drugs Marian. If I wasn't a pensioner would be well over 200 dollars. So I don't complain about the health services here in Australia. Only when they decide to cut back on the subsidies as know a lot of pensioners are stretched to the limits for medications. It is things like those out of pocket expenses and other hidden ones that they conveniently forget about when they decide on austerity measures. It is always the poorer in society that suffer. They can also be conservative labour liberal ukip or lord Sutch members. JWS

[John F Collier]

''makes you think'' Indeed it does Joe, ''Course and cost of Opicapone /(Ongentys®) :30 x 50mg capsules cost £93.90; annual cost: £1142.452'' Makes you wonder the cost to supply the average user of methadone!

Those Eylea injections I have, cost £800 a shot, the way things are going people won't be able get those much longer, JF

[Keith Tindell]

Thanks for your email Joe, nice to hear good news, and i hope your treatment continues. If its anything like my son, he was told the same thing as yourself, but for a different condition, but he has an infusion every 3 months of a very expensive drug, and they have now continued the treatment for the past 6 years with excellent results, kt

[Doc Vernon]

Hello Joseph
I too am so sorry to hear of your problem,but am also glad that there may be light at the end of that Tunnel mate,they are doing wonders in this Modern age so hopefully the new Drug will work/
Yes as you say there are many worse off than some of old Geezers afflictions,but still no way is that condition only something small.
Like me this Tinnitus is at times bad but we learn to live with all /
Take care and as said I do sincerely hope that you will soon be a lot better
All the best
Doc the crock LOL

[cappy]

###sorry to hear of your ailment joe .....we are getting older sadly these things are all around us......keep your pecker up mate ...and best wishes cappy

[joseph connor]

its time these pharmaceutical companies were brought to heel they hold the world to ransom , they just seem to name their own price , governments should know the cost of manufacture and pay that price plus a knowledgeable profit margin ?. i recently heard of a pill that cost 70 pounds each under licence and when that licence expired they could be bought for one pound ,immoral .!!!!.