Hello My war of attrition


#1

Hello I am new to the forum although I have read many  posts and thought my battle with our commo n foe might be of interest, I was told I had pd in 1998 and had no idea the pain AND suffering I would be enduring 17 yrs later, now I cannot walk far about 5 yds  without dystonia, I  cannot eat without  dyskinesia, or choking or both, I  cannot sleep  for night terrors and hallucenations so there are times when I am not a happy bunny but the one  thing well two, nope eh 1 2 3 ???? 15 things that  keep me  pushing parky back in his box  they are my family,  I have to fight hard to keep my head up and this is made possible by Duodopa,  this device powers me up quickly i the morning and if I manage my day I  can get through with only 1 shut down  if I am careless I will  be punished 3 or 4 times  by th beast, and the evil entity living in my brain hits harder and harder  almost every day now, so I often wonder how I am not conumed by depression and suicidal thoughts  and  I have had my share of  both but that would simply  load  my pain  unto my family so its  not a option,,no I think I am simply too stubborn to back down when parky  comes to play when I  have only %5 of my power left  and think I am dying I motovate myself by really losing my temper and using every bit  of my Builders Bast///s  and Buggres learn to swear reference book I GO from front to back and have it off  by heart now, of course this method is ot acceptable in company or on the street so moderation is necessary at times however it works and it just shows it is possible to defeat the beast and also has shown me that I have more willpower and mental reserves of strength than  I thought I had  unfortunately I feel I am becoming tolerant of Duodopa ,,( my main back up)  if that option is no longer available where do I go then I have been told I have usded all  known medication in my war with parky and im  running out  of  ammo folks. Answers greatly appreciated urgentlyrapid with haste and A S A P.

                                             KIND REGARDS              BROADSWORD


#2

Hello

your determination Is as formidable as this condition, so you will win the war! As you say, there really is no alternative.

Have you considered dbs? See many posts by Gus on the forum.

Best wishes

S

 

 

 

 

 


#3

Hi broadsword

just wanted to say I really admire your courage and determination

i m sure you have a lot more inside

I m going to try the swearing!

best wishes

samdog

 


#4

Thank you for the encouragement , I value all replies and suggestions, I have been reading about the effects of Amino acids,  more later but  it seems too good to be true, I will investigate and report back. 

                                    Thanks again   Supa


#5

Hi Broadsword

read your initial letter and it brought back my memories of when I nursed people with Pd.  I saw the ways it could affect people and  I never thought for one moment that it would land on my doorstep.    I had always felt that if I had to have and could choose an illness to have that Pd would be near the bottom of the pile.  (hope that makes sense)

Unfortunately I do not have any wonderful ideas or know of anything that it is going to make it disappear - except that a herbal doctor on a ship told me that they can cure Pd in China with herbs and he mentioned a tiger.  I wouldnt expect a tiger to be killed for me and wondered where the Chinese obtained their tigers from EH?

I have a wonderful back 'burner on my gas stove' which is working very well at the moment.  The Pd is gently bubbling away but I do wonder what it will be like when things don't respond to treatment.

I think I may have a cunning plan???

Hope you are feeling a bit better

Warm regards

ps would like to hear more about the amino acids

 

 

 


#6

 

                     Hello Astoriasis

                              A cunning plan eh, would that be as cunning as a oak cabinet of very generous proportians and containing  all the most cunning plans known since 8000bc, or not, hmm.

  I visited N T G H today for the usual check up and reporrted at great length about my worrying shutowns the answer  was expected, up the Ddopa intake and yess that will work but only for 2 or 3 months then It wll need updating again,the periods between the  uptakes are  becoming shorter my friend and I try  not  to it the boost button on the pump even when very ill as I fear I am now tolerating the drug so  the good effects are lessening  what happens then,  I feel like i am in a car hurtling towards a 10000 ton  concrete block at 250mph  that would be a BUGGATI  VYRON   then so not a totally horrible way to go and at least I wouldnt feel anything,, but  nay tis not a time for jest, but for thankfullnity and bumphnishnus along with total inscremitability for without the Ddopa I would be bedridden a once usefull member of society reduced to scrap, I do ot want this so my  life is almost like contant hide and seek I am constantly trying to hide from the  beast  using my drugs to steer through the mine field,,so far so so  good but  failing ever so  slowly failing,  as  regards the amino acids, I refer you to, hang on                 sorry,,  there is a guy called John Gray,,givng a talk, interesting,  but if you go on  YOU TUBE  and tpe in  parkingsons and amino acids there is a few people talking about them and seem  to have hadsuccess who knows, I heard  a rumour tha sme people tried  tis new drug,,  now bear with me here   I believe its called Xenihartribuilatinguvenevaathorbutviletastingorfuvalous, DISOLVE IN GIN FOR BEST RESULTS

                               THIS POST HAS AREAS OF MINUTE TRUTH,  BUT THE AMINO ACID THING SOUNDS PROMISING,,,,,,,,,,,,,,,,,,,,,,,Kindst Regards               BROADSWORD            OR BLUEGLASS


#7

Hi Broadsword 

Is that you or the gin talking.  It's better than superkallyfragi whatever.  Enjoyed your post and will see what John Gray has to say.  

Really admire your tenacity in not letting things get to you - although how can you ignore the vicious demon.

I'm not as affected by it as yet but know the demon very well when I nursed PD patients on the community when they were nursed by community nurses.  It was the last disease, if I had to pick a disease to be afflicted by, I would have picked but I do know of worse diseases.

Love your pseudonym.  What is the origin of it?

Have a great Christmas and New Year and I believe that Gordon is a great chap, good fun, makes you laugh.  I dont like him though he makes me cry and itch in funny places but ah, that's another story.

Warm regards

Astoriasis 


#8

hi broadsword, You have probably tried this i am guessing but just in case not is there another med than can increase the effect of your current meds? I have been told that ENTACTAPONE makes L-dopa work better is 


Duodopa the same drug as L-dopa ( madopar)? 


I really hope you find away I to fight distonia  I hate it hate it, thankfully at the moment it is not a daily issue for me as long as I stay calm, not always easy for a hot head like me.............


This was recently experienced by a young male yesterday after noon.Ha Ha Ha.


See reply on post HI number 57. On that occasion think adrenalin might have helped keep distonia at bay.


Kind Regards Feisty BB xxx


 


[Edited by moderator to remove profanity]



#9

Hi Broadsword......your posts sound just like an old mate who used to be on here by the name of FEDEX.....???? is it you matey under a different name? 

Dolly x


#10

[Edited by moderator to remove profanity]

OMG if the word T*** is a profanity It begger's belief as to what the moderator would think about what i did actually say to him when he held a knife to my throat and called me a f****** crippled b****. give you a clue f*** off you c*** granted not exactly lady like but in the situation I was in totally understandable.

Think living in the real world might actually help here...................................... 

Hence I generally would never ever use the c word.

Actually quite proud of myself for turning the tables and regaining the advantage back so I could hit him down really hard and get away. 

BB.


#11

Dolly thing you might right.

BB XX


#12

 

Mugger: " I say lady with a predicament duly hand over ones possessions"

BB: "One will not"

Mugger : "Submit or i will be forced too use this bladed implement about your person"​

BB:​ " Be Gone foul fellow this lady will retort in an unrefined manner"

'BOSH'


#13

SA,

This made me laugh!! 

 


#14

And me...very funny!x


#15

Thankyou SA,

This is exactly how it was yea right..........................

Knew I would get the last laugh xx

 

 


#16

Hi Broadsword

many thanks for your advice re John Gray.  Listened to him on u tube.  I feel that this is just one part of the big picture but very interesting.

I recently attended a lecture by a researcher called ?Dr Doce.  He was investigating why people with Parkinsons have larger deposits of iron in their brain. He induced Parkinsons in mice by giving them iron and then observed them before and after climbing up and down poles.  He witnessed changes in the motor movement.  They lost balance and the ability to do what is normally an easy task for them.  And of course he had a group that were not given iron.  He then gave them a drug they were testing and found the condition of the affected mice changed.  This drug has not been tested on humans and even if it was it would be a number of years before it could become available for general use.

I feel like cancer it probably has many causative factors including heredity.

But even if these very intelligent people have not yet got the answer which I am sure one day they will unless the workings of the brain are more complex than the enigma machine - we've always got hope and each other!

Just wanted to let you know I am thinking about you and wish that 2016 will be a better year for you,

warm regards

Astoriasis ( the flying harrier with a flower in her hair)


#17

Hello  Dolly

                    Well you are on the ball as  per  my friend  its quite a while since my last  Fedex  posting and though I  did attempt to continue a number of  things  caused me to abandon this  forum, I now  use

  otanheavy222  as   my  screen name still the aviation tilt to it as  the big E3  Sentry in  Nato  service has the logo   OTANONATO  markings.

          So the wanderer returns I will explain my missingness   in  posts which you and all other parties will recognise,  impulsive behaviour  pain  dystonia  diskinesia  instability marriage  probs  pain was  and is a major player but the destruction of  the arch enemy  blackheart  has wreaked has been massive resulting  in a bewildered outlook despite  the  Duodopa  its that device that  keeps  me  going  Dolly, i am now  going to  introductions  to  let all my old fiends know I am alive, though my intelect has  undoubtedly  taken a  hammering so   my  progress  will be  slow its been a effort to  create this  mail  to  you  old  friend,

                                       All  the  very best to  you  and  family   fed,,oops  otanheavy


#18

Hello Fed  or  Otan

Your posts have been missed and concern expressed about your absence on the forum. Welcome back in your new disguise! 

Supa


#19

Thankyou  Supa

                            Its  nice  to   be  back  I can  tell  you  times have  been  awkward, i  will  explaain in time.cool

                                                     OTANHEAVY


#20

Hey FED OTANHEAVY

Its good to see you back. Like the others I was starting to worry that you had left us

EF