Hatefull ,Spitefull ,Selfish, Thoughtless

fedexlike · August 31, 2014, 5:01pm

muc

Yes my friends, I had a very very bad fall at 10.am this morning, brought about by parky induced instability,in earlier posts I mentioned my ladys new oak coffee tables well I performed a slight tumble at first but when I realised I was heading for the largest of the tables, which being Oak is very weighty , in my efforts to avoid a oak induced splinterred skull,I made things much worse my head thudding into the door frame instead,and it hurt, but no blood only the traditional bump shaped bump, which recieved te ice pack treatment both to cool the area and cool my rising anger, anger at what you may say, well me for a start, I am absolutely useless , I struggle to wake after dreams I CANNOT MENTION here or this post will vapourise, the Ddopa gives some relief of which Im grateful, but recently even when up to speed in other ways my legs wont work its not that they are slow, but too fast, I was watching some old footage of Freddie Starr on this toplip a while back and he was miming to a faulty tape deck, the music speeded up he walked faster, then slowed almost to a stop , and Fred did the same, it was like looking in a mirror, for that is my technique of moving I AM SO FRUSTRATED, then there is tthe fact that I perform any usefull function around the house, I cant screw or nail or glue or well anything I cannot go upstairs or downd without my stairlift I hate the damned thing it makes me feel so old, then stepping outside my staggering gate is often mistaken for drunkeness (i wish) and if I corner too hard when on the GTmbs , my head acts like a upside down pendulum, and being top heavy I have fallen off twice, which is embarrasing, it seems that I am given with one hand and have 10 times more taken away with the other, I fesr the beast is gaining, but the real change is unfortunately my mind set,my own family never visit, I am convinced they think parky is the same as Ebola if they breath the same air they too will be stricken with this pig no PIG of a disease, hence my character is changing, it is morphing me into a person I DONT LIKE so if I dont like myself what must others think, I am genuinely terrified at the prospect of dementia lurking ahead, as all the states of mind Mentioned in the title seem to be gaining momentum,, HELP

REGARDS MY FRIENDS FED

Semele · August 31, 2014, 7:53pm

Oh Fed, how awful for you. I really do know how you feel, for I often use these words of myself, too. I'm told it's not true, and in calmer moments I can accept that. But you of all people must not give in - it's not in your nature. Here on this forum we must band together, as people who are Loving, Sharing, Selfless, Thoughtful. And if we can do it here we can do it in real life, too.

Thinking of you

Semele

hatknitter · August 31, 2014, 7:57pm

Hello Fed

I am really sorry that you`ve had a horrible day today and especially sorry that you feel deserted by your family.

My OH has the dementia type of Parkinson`s and you don`t come across like that at all. You put together coherent sentences which grow into coherent paragraphs so I think you can relax on that score for a while.

As to being useless. You may, or may not, be useless around the house but you are a valued contributor to this forum. And that is being useful not useless.

I don`t know what I could say that would be of help to you but I do know that I`m not alone in sympathising with your situation and wishing you strength to continue your fight against the PIG and some happiness each day as well.

Take care Fed

Hatknitter

fedexlike · August 31, 2014, 10:04pm

Hello Semele and Hatknitter.

Thank you both I value highly your opinions and your support, but I feel these changes more when stressed or angry, and I seem angry all the time now, there are things in my life I need resolving , and when Im angry its impossible to function normaly so nothing is resloved, so round and round it goes, I know the answer is to stay calm but the problem lies elseware and I have no control, I will just have to let things go that were once very close, thank you both for your comments.

Kindest Regards FED

hatknitter · September 1, 2014, 4:03pm

Hello Fed

My mind keeps going back to you and now it seems you have reached your own conclusion and feel you need to stay calm. That`s easier said than done.

As an outsider, not knowing you or your family, I wonder whether your long battle with Parkinson`s which we all admire has been going on so long and so remorselessly that you and your family are battle weary. Maybe you all need the army`s R&R. Could you sort of give in for a while? Perhaps get or accept help more often than you usually do. Try to ignore the slings and arrows. Then try to find one thing each day that is uplifting. It might be the colours of autumn leaves on a sunny day, a happy memory, something that has gone well. Share that thing with your wife and possibly send a very short e-mail about it to a daughter. It might help you to feel calmer and gradually change your view of your life. It can`t be all bad even though it must seem like it at the moment.

We once were in danger of losing our son and it was only very slowly, little by little, that we were able to begin a new relationship. So we can guess at how you feel and hope things will improve given enough time.

With best wishes

Hatknitter

fedexlike · September 1, 2014, 11:17pm

Hello Hatknitter

My friend there is much wisdom in your words,and after two more falls today the second of which has wrenched muscles down my left side,I have been forced to admit defeat, in other words parky has won this round and I must rest up until the pain subsides, it will be this way for some time as I do not recuperate from this type of injury quickly, as regards the family problems I know I should act and attempt to repair the damage done and prevent things from slipping further into dysfunctional mode,as I have done many times, to many and my mind seems unable to call upon the reserves of compassion and understanding which are essential in situations such as these, I suppose its best described as I cant feel emotion, not only do I feel I cant reach out,but even more worrying, though even that is not strictly true as I am not worried, as I was about to say I dont want or need to reach out,and as long as this very sad situation persists hastned by a serious amount of damage to my memory banks , well it does not bode well ,I am things to drift and in anycase the skills I learned as a father built up over 40yrs are gone, along with those of a Grandfather, gone, and I DONT FEEL ANYTHING appart from the pain in my side, I feel that ok, and arguably all of this horrible wreckage can be traced back to BLACKHEART, parky. A week or so back one of our forum stalwarts suggested I should not be posting family difficulties for all to see,but at this is my only means of venting my fears and feelings that simple statement surely must apply to many others reading these words, how many then that have PD worldwide who suffer in silence for they have no one to hear their cry for help, I feel I can open up and speak my mind and always the kindness shown by you all is very much appreciated and Hatknitter, I WILLtry and ease off the venom and hatered I feel for those emotions are negative and drag me down into black depression ,so thankyou I am down but not out.

Kindest Regards FED

Katty · September 1, 2014, 11:45pm

Hi Fed

I admire you for speaking out how Parky gets to you as i the research I had done on trying to find out how it would affect my husband when he was first diagnosed was like hitting blank walls. It was and in some way still as if no one wants you to know or find out how this really affects people and their families.

My husband has had Parky for approx 15 years (diagnosed at 40 years old and had symptoms for about 2 years prior as they told him it was arthritis.

He has the mood swings, anger, frustration and the language that he speaks is bad sometimes. He also gets down days and recently seen a few changes in how it affects him.

If it was not for people like yourself speaking out then you do not really understand how if affects different people and in most cases when a new change comes along you think you are alone and if it only happens to him.

I would suggest you speak to your family or write to them on how you feel and that it is not you, but Parky on its off days, You need to let them know that on your off days how you would like them to be with you at that time.

When my husband gets his off days I know its not him and I know by the type of mood he is in in either to say something funny which brings him out or just to leave him alone for a few hours until he is better.

It is all about working together in this and finding new ways of dealing / accepting the changes that it brings with it as it affects not only the person who has Parkinson's, but those close to them.

I hope your pain gets better soon.

Take Care

Tina

fedexlike · September 2, 2014, 9:40am

Thank you Tina for your comments, it more than ever shows the devastation that loving couples have to face, I am going out now to ameeting of parky victims, I go every tuesday so this reply is shorter than I would normaly send to you, so please accept my appologies will contact you again soon

Kindest Regards FED

libra_lady · September 2, 2014, 11:25pm

Fed.

I am really interested to know what medication you are on? My husband has had bad experiences on different medications and you sound like you are really struggling. Parkinson's medication can have dreadful side-effects - more than you would ever realise. I would be really interested to know what Parkinson's drugs you are taking.

fedexlike · September 3, 2014, 12:37am

Hello libra lady

The two smileys indicate how I FEEL NOW,after typing a very long post while in AIRPLANE MODE,and the realisation that the huge effort I MADE TO give usefull ways of escaping the BEAST even for a short while was a complete waste of two hrs twenty mins, that is how long it toiok to reply to Tina,in my attempt to lift her spirits, so if you are reading this Tina I will send another post tommorow, as right now there are no words I can think of to adequetly describe my pure multi distilled explosive rage I feel at losing what for me was a very very i mportant post and I HAVE NO ONE TO BLAME BUT MYSELF be warned make sure AIRPLANE MODE IS OFFbefore you post anything anywhere or it will simply vanish when you press post".

I appologise Libra Lady Im so annoyed with myself, and anger turned inward is hard to dissapate, the answer to your question is in short DUOdopa, you may have heard of it it is a truly life changing system, its a litttle unweildy until you get used to it, consisting of a external pump delivering a constant steady dose, there is not the severe ON OFF ON that occurs with capsules or pills, iit has helped me so much in the year anda half it has been i my employ, its not a cure you understand, I was 80% crippled most of the day BDdpa, or before Duodopa, and cannot praise it enough, BUT AND ITS A VERY BIG BUT, the NHS have stoppped funding for this life changing system if you go on you tube and type in DUODOPA SYSTEM it will tell yo all abought how it works I am one of three in my area to have it, it costs nearly £30.000 to install and £20.000 a year to run I WOULD PUT UP A GREAT RESISTANCE IF THEY EVER TRIED to take it away, ,i must go now 1.35am I WILL CONTACT YOU TOMMOREOW

KINDEST REGARDS FED

fedexlike · September 3, 2014, 10:45am

Hello Tina

Last night I spent over 2.1/2 hours, thinking carefully abot how to reply to your post It took so long by reason of the content, in other words I carefully thought about what I needed to say to you and everyone else who are having major familly difficullties as a direct result of parky, unfortunately becausr I was concentrating so hard on the work in hand I did not notice that AIRPLANE MODE was switched on so the whole very long post completely dissapeared, for this I appologise it was entirely my fault and dissapointed though I am life must go on I will try and remember( wat eye rote.,) it was all relevant to our mutual enemy so here goes. As I mentioned I was going to a establishment in Blyth where I meet with other PD victims, originally there was about 14 of us in the group but now only five, the attrition caused a maily by death, I find that death is natures way of telling us to slow down though I hope I have a while yet before the reaper comes calling its my birthday tommorow age 64 doesnt time fly when you are enjoying yourself , if I have no contact with my family tommorow I will know that our relationship is doomed I acted upon your and left messages sent e mails texts but no reply so I am minded to allow this fragmentation to run its course, in short I am constatly tired, and tired of building bridge after bridge only to see hem fail, I ha ve gone over every and anything I have done, and I honestly cant find anything, its not that we sqabble you understand, its just silence and that hurts I dont mind saying, the the last few weeks have been hard parky had the upper hand and we both needed, my wife had a bad fall ,AGAIN and we needed help shopping and afew simple tasks around the house, I have asked and have been told, yes I will be down tommorow,that was 9montsago I am now at the not bothered state of mind things will either sort out or they wont, but life must go on Tina, and I am actively looking ahead now I have been making enqiiries about photograpy ,and ornithology courses at colledge, I want to do something usefull maybe try for a history degree at Newcastle Uni, It has allways been a great interest to me, older people than me got their degrees late in life my own mother attained the highest marks while gaining her English degree age84 so theres hope. for old fed. In the meantime Tina indeed everyone, go on you tube and type in THE HUMAN CALCULATOR and be prepared to see the Astounding, Amazing, Astonishing ..

Im off now, visit Mum All my very best wishes Tina,

FED

Katty · September 3, 2014, 8:24pm

Hi Fed

Thanks for your reply.

I don't let my hubby's friend Parky get in the way as I see every day what he goes through and feel grateful that I am healthy to deal with whatever it throws at us.

It does get him down and constantly apologising for his mood swings, which myself and our children keep telling him there is no need to.

Parky does affect all that is close to you as we no longer have holidays abroad which we used to love doing. Recently to compensate for this as I belive getting away from the same brick walls helps him, so we bought a caravan and going their every weekend after I finish work has helped him as he loves it...I just hope he does not want to go down in the winter.

It also affect us by now having to plan ahead if I or my children are going out as someone needs to be there with him. We take it in turns when we want to go out.....this is hard as we used to just get up and go - now I go out about once a month. To compensate for this I took up Family History research (Family Trees) which most I do online. I love it that much I have done over 20 trees for different people. I only wish my husband would take up a hobby - his hobby was football which he does not go to now and he is not into computers.

I don't think people understand how much Parky affects peoples lives.....we used to think about what we would do together when we retired....in this we feel robbed, but as you say life does go on and you just need to find ways round it which we do.

My husband has an amazing sense of humour which I think is what gets us through the downs and ups and I just feel blessed to have such a wonderful person in my life.

Sorry I should have said Happy Birthday at the start and hope you have a great day. Always remember that tomorrow is the start of another new day and you can do things that you really want to, but just need to be practical and sometimes you may have to compensate for what you want, but just think how exciting it is to find that you can do something else.

Take Care.

Tina

fedexlike · September 3, 2014, 9:20pm

Hello Tina

Reading your post is almost a mirror image of my life, my wife looks after me so well, we both squabble at times but mostly things have settled into a pattern and a set of unwritten rules apply which we use as a guide. In addition to PD I also have Prostate cancer, which so far is being held in check by implants , then there is another rather special afflction called Nail Pattela Syndrome, this is a long term ailment which affects my nails ( my thumbs in my case) my knees which allow the pattela to slip way out of position the resulting pain is very severe. I have learned a method of knocking it back in which is even more painfull but it makes the pain of the original dislocation dissapear, it sometimes happens in the early hours , everything seems much worse the doesnt it, I turn over in bed then click I cant bend or straighten my left leg chuck into the pot parkys 85% shut down and oh what fun I have, I have to wake my wife, but there isnt a lot she can do it happened very early Tuesday and we thought it was going to be a Paramedic job, but I went into a blue rage and belted the offending body part back into position, job done, ah no not quite,NPS can also affect your kidneys and kick start diabetes, oh and it causes my nails to split painfully,Im like a walking medical Encycapedia Tina, I was pleased to see your husband retains his sense of humour, thats a must have in his armoury against parky, I use humour a lot I often feel so ill and I will tend to swear a bit and go on you tube and watch the funny antics of cats and dogs, all animals in fact, and I soon pullout of the blackness, they really cheer me up well I am going for something to eat now but I wont retire until 12.30 - 1.00ish, as It lessens the time I must endure the nightterrors. PS Thank you for the birthday wishes

I wish you both all the very best in your battle against this cruel disease and do not hesitate to contact me if I can help in any way, Kindest Regards FED

fedexlike · September 4, 2014, 11:16am

Hello Libra Lady,, Tina. Hatknitter, Semele

I feel much better today, MY64TH YEAR, I didnt when I woke up but do now, there is also better news re my daughters they both rang this morning and told me they will be visiting after school and will be bringing all my Grand Children, I am so happy about this I could leap about shouting RAH RAH RAF AND DOUBLE RAH WITH VCUSTARD,,forget the V as it only applies to Viscious custard only available at certain shops, usually hidden down dark alleys out of sight, and it is very powerful stuff one table spoon is all you need and its a case of nailing or fastening every thing down and prepare for what would appear at first to be a acute attack of grumpyness I know thats spilt rong but eye snoked into the citshon wen my lovely wife was trying to put our pet AFRICAN ELEPHANT ,,RODGER THE DODGER back in his field, and I HAVE HAD ONE AND A HALF table spoons of viscious,, I can feel it coursing through my body and now I AM READY to do TELEPHONE BANKING or contact my insurance company, trying to convince the bloke on the other end of the line in ZAMBIA that our little 4YROLD TOYOTA YARIS, does not have a W12 1000HP engine, or do 0 to sixty in 3 seconds, while trying to learn URDU enabling me to understand him, then there has been a lot of politcal claptrap on the news, i HATE POLITITIONS even more than parky, they lie cheat defraud cheat and fornicate there way through thier 5 years completely bu..,'r y up the country while greedily lining thier pockets, then there is humans my rage at humans is going balistic we are about to go to war with Russia, while facing attacks in our country by these religous nut case murdering BAS,,,,DS whos hobbies include cutting peoples heads off, ethnic cleansing rape murder and so on and on, well you get my drift I MUS GO NOW ASwe are celebrating, and the effects of the hallucinriatastic custard is wering off, and humans are supposed to be the most itelligent of all species,,, YES YES my little velociraptor IM COMING she for once in our marriage is rady before me so must go

BYE YALL,,, A VERY HAPPY FED

fedexlike · September 4, 2014, 9:40pm

Hello Friends, the day went well. it was so good to see my Daughters and Grandchildren, they have assured me I have not done anything to cause upset, so I am much happier now,and we have plans to do things, so looking forward to that, also some dear friends who we have not seen for years dropped in so I will have t get the roofers in tommorodw . I wondering if anyone saw DIY SOS tonight where the team converted a house for a youngster with muscular dystropy, Its impossible not to be moved by the situation that boy and his Mam and Dad are in and his young Brother, there are good people in the world,,its finding them, thats the problem.

Tina I hope you dont think im bonkers after reading my previous post, its just parky is so demanding of attention and when something loosens its grip Im like a kid and tend to be silly, its so liberating being silly, I have in fact been silly most of my life and probably even before that,so if I veer off course a bit dont be alarmed, also go to HEAVY PLANT MISHAPS AND SKILLS ON YOU TUBE AND LET YOUR Husband see the sort of mischief I used to get up to.

Kindest Regards FED

fedexlike · September 5, 2014, 12:22am

WARNING IF EASILY OFFENDED DO NOT READ THIS POST

These smileys were installed by me, to appease my little velociraptor X Japanese Akita X Rottweiler of the finest breeding mind you,,, wife. I dont mind telling you I WAS blackmailed into it for its my birthday today and it used to be a tradition in this madhouse, or if you wish theCLAN, OF THE MAD FED McMADS to, well you know, nudge nudge wink wink,,,,, oh come on you now what I mean,,, sounds like bump ,,, yes yes you know what Im getting at, in Ornithology "of which I have always been fond of" there is a seabird, it lives in and arround precipitous cliffs and harbours,,yes I am waiting, yes,,no not the PUFFIN,, the SHAG, now do you know what I AM TRYING TO TELL YOU it has been over6years since, I sounds like honk,, ok Honked my beloved, now you know I AM NOT USING ANY WORDS AT ALL which are not allowed on the Forum so please dont edit them out any way by a astoudingly astounding megalarious contreveiently coincidence we both suddenly wanted to bang ( not a swear word by the way, " THERMO NUCLEAR BOMBS GO BAMG OR EVEN BANG well its a bit louder than bang,, wanted to bang each other into orbit round the SUN,, nay the truth willout,,, now we were both very out of practice, I MEAN COME ON 15 YRS OR MORE WITH BLACKHEART, PROSTATE, NAIL PATTELLA, CONSTANT NIGHT TERRORS LACKOF SLEEP DOES NOT LOOK GOOD ON PAPER DOES IT, BUT slowly I began to remember as did beloved and well it was pretty good, if I told you that my skills were vast and immaginative and My Lady would travel of our planet all together when I really decided to make it happen, well she didnt go that high last night but easy3oo mtrs I cant believe what happened im 64 and beloved 68, I hope you are not ashamed of your fellow of the Forum or shocked by my calling a spade NORTROP B2, BUT I HAVE TOLD YOU NOW and we have a date for Sunday,she is going to our favourite eatery alone, and my mate chris is going to take me there in his car, well need I SAY MORE NUDGE NUDGE WINK WINK,, THATS WINK by the way, now if any one is offended by my very ,lovely story well dont read it, I think its important that you all know miracles do happen,,, I know many will find the thought of one 68yr old lady and her 64yr old toy boy unpleasant, but I can assure you it wasnt.

Good morning all.

FED

fedexlike · September 5, 2014, 12:34am

A couple of updates to my last post, it should read my calling aSPADE A NORTHROP B2 STEALTH BOMBER, I never could talk dirty with my lady, well I WOULD on the odd occasion but beloved would be displeased, SORRY AHL GET ME COAT

FED OH AND THAT PHOTO IS TERRIBLE AND WILL BE REPLACED SOON,, I WAS IN A DDEP SLEEP and knew nowt about it

fedexlike · September 26, 2014, 9:05am

For anyone who is curious, my AVATAR is the RAFs new heavylifter , the AIRBUSA400M ATLAS the first one of Its a amazing Aircraft, see it on you tube

FED

elegant_fowl · September 26, 2014, 12:18pm

Fed,

I was wondering what your latest avatar aircraft was. I noticed it was bigger than a Hercules so assumed it was a C17. I'll look out for it.

EF

fedexlike · September 26, 2014, 9:29pm

Hello EF, the A400M is a very capable heavy lifter and has many advanced systems, go on you tube there is pages of info , I have a feeling that this Aircraft is going to be one of the best transports ever,and join the ranks along with the c130, DC3 C5 AN124 AND OF COURSE, THE An225 MYria, there are 22 on order

Kindest Regards FED