Floods of dykinesia tears


#1

 

 

        HELLO MY FRIENDS

                       I have had three days now of   Dyskinesia, varying in intensity from slight, to the most terrifying events I have ever experienced, some of these shocking episodes, well all of the  worst attacks occur through the night when I am wakened by my head lashing backwards and forwards I would say freqencywise 3 per second and as a result I am now in agony with  a trapped nerve in my neck,this attempt by BLACKHEART to screw my head from my body is accompanied by restless legs which try their very best to out do my head in their manic impersonation of Usain Bolt, if i was standing up I would leave him standing,, they go like  the pistons and linkage on MALLARD at full chat and just to make things a little more interesting, parky allowed  his best ,mate Nail Pattela Syndrome,to contribute , and there is only one trick in this ponies repetoire, PAIN LADIES AND GENTLEMEN, OH YES PAAAAAAAAAAAAING It goes like this, parky gradually nudges my legs up to 7000rpm, then  NPS dislocates my Patelas or that may  be Patellas if I am lucky he will  only kick one out, this creates pain w hich on a 1  to  10 chart would be ahh , 1000 002 so you would therefore  come to the conclusion that if NPS really wants to make old FED yelp and dislocate the other Patella, the resulting EFFECT WOULD BE TWICE AS PAINFULL,, AHH NO  not so, lets put it this way, if anyone anywhere on our lovely planet, and that includes the wise and, great contributor to our Band of Brothers, and Sisters  Mr T down under,,and  J of Grey in the US of A, my friends if you are awakened by a terrifying  bloodchilling most inhuman  screaming which lasts for well it may be up to 1hr or more, you can rest easy its only old FED recieving his daily kicking from PARKY and  FRIENDS, iM GOING TO PART TWO NOW SO DONT DISSAPEAR


#2

             HELLO I FEEL SAFER NOW, THIS IS PART TWO

 So the pain chart, you think two patellas twice the pain, this is a common mistake made by the most emminent  physicians if  I SAY  22000 000 000 TIMES MORE painfull, this produces sreams which despite the void of space, can be heard on the Moon,and causes elderly persons to be rushed to hospital in shock all over the world ,!     ,This much feared enemy, went into full double dislocation mode last night so anyone thrown from their beds by the accopanying shock wave,(forgot to tell you about that) I can only appologise, life seems to have it in for me and if you throw in hideous night terrors if I get 1hrs sleep undisturbed,  one bit of good news, my Lady and I are on a much better level of understanding I have agreed she  can have sex with Geoge Clark of The Restoration Man as many times as she wants but only if I CAN WATCH,,,no no no no,sorry  sorry  SORRY,I  HAVE TO BE SILLY just cant resist.cool

     I should add on a more serious vein, I cry and I mean sob my heart out 5 to 25 times a day,I hope this isnt the prelims to breakdown,

                                     Best of the Best to the very Best                  FED

 


#3

Oh Fed

If you really are serious about what you have said, I can't stand it, why can't you get medical help? It's really too much to contemplate. 

I can't say any more now.

All best wishes

Casie


#4

 

   Hello Casie

                    Fear not dear friend, yes life is becoming more difficult, and the pain is bad but I am not going to give up just yet, in fact  after a bad stumble, " can you have a good one", I have twisted my lower back, I have had back pain of varying degrees since a accident at work but this is far worse, PARROTS EAT THEM ALL  lessens it to acceptable levels, this fall,, one of many occured this afternoon, what next eh, oh I was only joking about Mr Clark,I would be uncomfortable and voyeurism is not my scenecoolonly joking Casie.

                                     Kindest Regards  FED

 


#5

 

              Also Casie I knock my patellas back in it hurts but I have no choice, they have been doing this since I was 17.

                                                    Night Night  FED


#6

 

    Thankyou for replying to my post Cutiepie,we are or have been through the same hell on earth ,and that qualifies us and all who read your post to join a very special group,THE TO HELL AND BACK EVERY DAY and otherUNPLEASANT THINGS,  CLUB   yes I know its a bit longwinded but in the words of 10Bears, the COMMANCHE CHIEF from Outlaw Josey Wales, "THER IS IRON IN THOSE WORDS" they in short describe the horrors we suffer,and must continue to do so my friend, when one or both my kneecaps decide to align themselves with parky and pour more than enough agony to share with 20000 of we, the Elite of the Elite of Endurers,,I often as I am thumping my errant patellas back into place I am screamiing, defiantly " IS THAT ALL YOUVE GOT, BRING IT ON" thump thump ,eventually I hammer them home an the pain eases,I have no choice they must be re'aligned  or  cant bend or straighten my legs,its later when the pain subsides, and I relax that the tears flow,I am taking too many hits my friend, yet still endure without snapping, I cannot explain where the strength to take on so many adversaries at the same time I am certainly not superhuman, stubborn yes I am certainly that, I bend and flex mentally and so dont break. doe's this strike a chord, its my only weapon left Cutiepie.

                                          Nice to make a new Friend  BFN            FED


#7

Hi Fed, I found this blog I wrote several years ago and thought I'd share it with you. 

Living with a chronic progressive illness certainly has a profound impact on one’s life and creates a lot of grief in response to the losses it imposes on our lives. There's a large variety of potential life interruptions and psychological changes one will go through when dealing with accepting Parkinson's. We learn quickly that Parkinson's is erratic and unpredictable and our days require constant readjusting. We are likely to endure multiple losses that may include the loss of control and personal power, which is an important contributor to self-esteem, as well as loss of independence, loss of identity, loss of financial status and loss of one’s customary lifestyle. These are all issues most of have to deal with and are often experienced years before diagnoses that can inflict much stress and anxiety on oneself and those around you.

In addition, we may also have to face the possible relinquishing of our hopes and dreams and face the prognosis of more ongoing losses. Changing roles in family and social situations that result from a person’s illness also can create additional adjustment problems for everyone involved. Sometimes when you are the one who has Parkinson's, you fail to notice family members and partners are likely to be experiencing the same feelings as you are as well as their own feelings as to how the illness is influencing their life. If these feelings of resentment aren't worked out, then relationships may fall apart and leave us with another loss. You fear being a burden on others, you feel very insecure, less confident and resentful of others, often bringing to surface the famous words WHY ME, WHY US?! We feel we need more reassurance, lots of hugs and kisses and closeness. However, at the same time, this disease can make you feel less desired and we can shy away from the love making for this reason.

Perhaps the most difficult transition with Parkinson's is the loss of the identity one held before becoming sick, followed by a complete restructuring of the way one defines oneself, and the way one interacts with the world. Sometimes it is difficult to feel good about oneself -- Parkinson’s incorporates into a new self-image. The work of rebuilding one’s life and identity can be further complicated by the loss of closeness with partners or other supportive relationships that sometimes follow the onset of serious illness and can often lead to more resentment and the feeling of being isolated and often alone even though we have people around us.

Moreover, as all persons who suffer with Parkinson's, many of the symptoms being invisible, know the lack of validation and support for our illness, which can create further grief and frustration. At a time when we most need compassion, love, understanding, sympathy, and support --- criticism, disbelief, and anger, confronts us!

It is no wonder that many people facing these multiple losses and the grief that naturally ensues find themselves experiencing high levels of anger, fear, helplessness, hopelessness, resentment, depression and damaged self-esteem. Coping with all these issues can be very overwhelming.


I found the following coping strategies help me:-

Allow yourself to feel and express your feelings.

Allow yourself to grieve for what you have lost.

Find support such as a support group (such as this forum), friends, counsellor, etc.

Recognize the limits Parkinson's demands in your life and set reasonable goals. Be realistic about what to expect from you.

Learn to adapt, make substitutions and modifications so that you can still participate in fulfilling life activities. Do something fun!

Delegate with the family so you don't have to try and do everything causing burnout--Keep communication open with partners, friends and family members so that feelings and resentments don’t build up and so everyone’s needs can be addressed and met in the best way possible.

Learn to value your own company, become your own best friend, and find yourself worth based on inner strengths rather than on what you do.

Take care of your body by following a healthy diet, mild exercise, and appropriate rest. Listen to your body. It will tell you what it needs. Pamper and nurture yourself with things that are enjoyable for you. MAKE THE TIME! YOU DESERVE IT!

Educate yourself as much as possible about Parkinson's and treatment. This will help regain a sense of control. Involve your partner in your appointments and don't be afraid to voice your opinions.

Let go of expectations of others and society. Understand that society’s definition of what's normal no longer applies. Do what you need to do for yourself and don't feel guilty.

Make peace with Parkinson's. Try to think of the illness as your companion instead of your enemy. Listen to the wisdom and lessons it may carry for you. Learn to flow with and accept Parkinson's rather than resisting it. I've learned a lot since my diagnosis and if anything I feel a better person. When I first read Michael J 'Lucky Man,' I thought how you could be lucky to have Parkinson’s. Now I understand what is meant by those words--he believes Parkinson's has opened many doors and allowed him to meet many people and encouraged him to be more in touch with his soul.


We need to adjust our mind to think its ok if you can’t do something the “normal” way but you can find another way to do it that fits your needs. Making modifications, adapting, substituting, changing time, location, and intensity of companionate activities, can all help to maintain an active life style. An example of this might be you're unable to attend an outing with your child so you find another alternative activity of having quality time such as a dinner at home and doing in fun activities. We have a Nintendo wii and have Nintendo wii nights. Carefully ration your energy. Prioritize and make lists of what’s important and what must be done and what can be put off for later.

Living with Parkinson's is not easy. It is a lifelong process that will require ongoing adjustment and readjustment of every day and each situation. Understand and accept that it is the nature of your illness to be unpredictable, intrusive, interfering, and erratic. Expect the unexpected and make adjustments accordingly. As you are sure to go through periods when symptoms exacerbate and periods of improvement, it is natural to move back and forth in your level of acceptance and adjustment. Understand that acceptance and adjustment occur in ebbs and flows.

Depression and anxiety are so mind and life controlling and play a major role in Parkinson's. I've had counselling and also a course of cognitive behaviour therapy and found it helped me to accept Parkinson's and not see it as my enemy. Mind you, I still have my 'WHY ME, WHY US' days and have just had a top up appointment with a psychologist. It helps to keep me sane and it is very important to talk about the way you are feeling. Don't bottle it up! Communication is a vital part of living and coping with Parkinson's in our lives!

Have you accepted Parkinson's in your life? Are you in control or is Parkinson's?


 

 


#8

Fed

The description of the horrors you go through and your ability to rise above it and make light of it are truly inspirational.

Would you attend the Google hangout please. I for one think your input is vital to this forum.

Leyther

 


#9

 

   Hello Cutiepie your post was like reading my war with parky,ongoing, and I would say, for me a long long war of attrition,I will prevail, just, then peg out celebrating,, sorry its me being silly again,but knowing my luck .

 Hello Leyther yes of course be glad to  Eh, what is it and where is it, it will be on the morrow my friend as parky is draining my resources so I must close the waking battle and exchange it for the sleeping war which is much worse,.

                                        Kindest Regards to you both FEDcool


#10

I HAVE JUST LOST ANOTHER POST , GONE GONE JUMPED BACK  DOWN THE ALLEY AND WHO WILL BE MY ROLE MODEL NOWTHAT MY ROLE MODELS GONEE GONE, AND WHY ARE MY NIGHTS SO LONG, WHERE ARE MY FAMILY,,,AND IF YOU BE MY BODY GUARD I CAN BE YOUR LONG LOST PAL,WHEN YOU CALL ME, YOU CAN CALL MEEE AL I WAS'N'T BLAASPHEMING OR ARRCASTIC BEING STROPPY CHEEKY OR WILD,IN FACT THE   OPPOSITE MY WIFFE  LOVES  MRE,,,I HOPE I FEEL WELL NO PAIN AND A GREAT PEACE OF NEWS, AS WHEN FEELING SMALL WHEN TEARS ARE IN YOUE R EYES I WILLLL DERY THEM ALL,,,SORRY  OFF TRACK AGAIN,, NO NO  MY UBERBUSSDIES BUDDIES I HAVE  BEEN RRAKING ABOUT IN MY LOFT AND DISCOVERED THAT SME OF MY VERY WELL CHOSEN  DIE CAST MODEL TRUCKS HEAVY PLANT  BUSES ARE NOW WORTH 5 TIMES WHAT THEY COST ME TO  BUY, WILL PICK THIS UP  LATER AS HOSPP VISIT#

                                                 FED


#11

Is that their worth in £sd or new pence  beware they taken the new off so its now officially old money

What they doing up in the loft they should be on display more to the point what are you doing up there. 

Rest up man!


#12

Hi all,

I am such an independent person and this PD is killing me.  Right at this moment OH is speaking to insurance company to insure my car in his name.  There is no point in putting it in my name, I'm not getting my driving licence renewed so I don't need it.   DVLA did want me to have an assessment to give me a one year licence but I'm not comfortable with driving so what's the point of going through the anxiety state I get into to take this assessment when I'm not going to drive anyway.

It's the independence taken away from someone who likes to be organised, arranging all that needs to be done in the house and at work. I did enjoy making dinner for friends but that's too much for me at the moment.  My friends are helpful and make arrangements to come over to us bringing fish and chip supper with them but I hate it when I hear whispering "how is she?"

That's enough moaning for now.

Casie

 


#13

cool

         Hello Leyther

             I just had no idea how much kit I had up there.arguably the bulk of my collection collected during my O C B, period but  I started about 30yrs ago buying 2 or4 a year I am not exaggerating Leyther after a quick stock take , wait for it remember I am not fibbing here,£22 000 and thats underestimating, but not only that there is the weight, once again I kid you not, no no no this is on my tortoises life 1 to2 tonnes weight, its a good job we live in a old pre war (second) home, the beams up in the loft would take a lot more weight than my estimate, I WOULD  LOVE TO LET YOU SEE THEM, anyone can contact me if you wish, my details are available, I am about to start construction,,well of a construction site/ quarry using the huge collection ,it might seem a bit childish but I am vert fussy with attention to detail as you shall see, I intend to enter Model and Photographic competitions , Im like a kid in a sweetshop, or even a bull in a tea cup,,nope a chicken in a egg cup,,,bug//r come on brain COME ON!!!!!!  Akid in a toyshop  HORRRAYYYY sometimes my 16 brain cells go night night all at the same time, you would think they would leave one on sentry duty ,MEERCAT WISE. By the way you mentioned something about GOOGLE, more please.

                                     Yours CURIOUSERANDCCURIOUSER            FRD OR EVEN FEDcool


#14

big grin

      Hello Casie,worry not sweetpea,you are correct in your judgement,I was so full of confidence when I went for my assessment, after all the many and varied  machines trucks vans cars, I even had a go flying the Space Shuttle,  NO I DID'NT,,THATS SILLY,,, which I had driven I would walk it with one hand tied behind my eyes /????????????, I failed and not in a small way my friend,it was the realisation that my carefully honed skills were gone, I was Dangerous, I was VERY SAD AND UPSET. but not as sad and upset as I would have been if I had been seriously killed, or worse sent someone else into the void never to return, I admire you for making the right call Casie, good on you ,and stick to your guns girl oh and take no notice of those who whisper for they shall be cast assunder on cast assunder weekend, held every weekend funny enough in GATESHEAD. near THE SAGE.

                                        BEST WISHES MY FRIEND            FED


#15

Fed

Re Google hangout see the threads in about the forum section and contact Ezinda

I'd love to come and view your collection. I know the North East quite well and diesels cheap.

I ve always been interested in die cast models  probably cos dad owned a toy shop.

Happy Days

Leyther


#16

 

  Good Morning Leyther

            I would be delighted to have you visit, we have some major building work going on at this time and part of my collection will go  to pay for the work ,the  collosal weight is beariing down on a  big heavy crossmember   so a lot of work going on, it was my wife who  suggested selling to pay for the extension and I steeadfastly dug my heels in and refused, but the die was cast, pun intended, and it just doe's not make sense  to have all  that weight hanging over our heads,so a Dealer from Newcastle is taking nore than 3/4s of them, I  recieved a very large sum ,, in cash which has more than covered the cost of all the work,  I cannot believe they were so valuble Leyther I was able to reassure my builder that the cash was there, I SHOWED HIM THE MANY BUNDLES, and the effect was astonishing, he  is bringing in a Midi Digger for the footings plus a very small dumptruck to remove the spoil,and as he has no one to operate the MIDI, STEP FORWARD MR FED,I have driven excavators ranging from  5 t0 71/2 10 20 s25 30 and finaly 44  tons so  I am looking forward to it as I contacted the company I used to work for and,, "well as its you FED" I BOOKED the  8065 at considerably less than normal, but I will be responsible for any damage either to  the 8065 or any services, gas electric water drainage, I am in the bad books with beloved for setting up this arrangement as, my builder had three guys  booked to hand dig the founds, two of them are twins and have a amazing resemblance to MATT DAMON,  I cant see it, but I am very very jealous,to such a extent, well I wwill ontinue in in PART 2


#17

coolcool

               This is me and my Bother Keith, we are not twins but I bought him some new RAYBANS  as you can see, he has already nicked 3 pairs of mine,which he denies of course, despite setting off back to his home in OXFORD wearing them, last week, as I said we are not twins he is taller than me by 5inches at 6ft 5,and he drinks far too much, while travelling home completely bombed, he fell of his bike in front of the last bus to OXFORD luckily the driver was just pulling away from the stop and stopped before altering the shape of my dear BROs head to something resembling a brains pitza, I have told him if he is killed or dies in  anyway shape or form  AS A RESULT OF DRINK  WONT EVEN SEND A BEREVMENT CARD, HE MAKES ME SO MAD, HE IS MY  ONLY BROTHER  AND I LOVE HIM despite nicking my RAYBANS        ,(WE HAVE A SISTER ALSO) lives 1 mile away, but he wont go to see her as next to mum now96 SIS is the REMAINING MATRIARCH  and she scolds him remorselessly about his boozing, oh  I knew there was something, he has severe tinittus neAND IS SHOWING SIGNS    OF  PARKY, SO THERE YOU HAVE IT LEYTHER LET ME KNOW WHEN YOU WOULD LIKE TO CALL WE MAY BE ABLE TO ACCOMODATE IF THE WORK GOES WELL,

                                                regards fed

 

 

 


#18

Hi Fed

Im a rough and ready sort of character and having driven tractors in my youth I would love a go on an excavator.

No need to accommodate I have a place I can stay within driving distance.

Any time from the beginning of Feb will do Fed.

Except the 14th as I would not want to intrude  on any seasonal festivities.

Leyther


#19

 

    ok  will pencil in diary,and update, but march would be better.

 

                                  FED