Newbie


#1

Hello all 

Just been diagnosed this week although have had suspicions for a while so although still a massive shock not a massive surprise. 

I'm a 42yr old male in the UK ,  nurse by profession but mainly doing backroom support at the moment. 

I'm fairly tech save so am anticipating frequenting these forum boards quite regularly and have already found support from reading other people's stories,  so thanks. 

Would be interested to hear any book recommendations from people who have lived with PD for a while.   I've got a couple of autobiographical  books but would value anything a bit more practical.   I realise there is a wealth of infirmary on the Web but would value something a bit more structured and perhaps from a young persons perspective. 

Would be grateful for your thoughts 

Nick 


#2

Hi welcome to forum . I'm also a nurse diagnosed 3 weeks ago  been off work since June as had op on foot and then symptoms of pd seemed to accelerate ..started on requip xl upto 6 mg increasing weekly. . No effect on symptoms yet . 

Forum is great for asking the questions you suddenly think of . Lots of helpful answers . 

Have you started on any meds yet?


#3

Hi Buzby

Welcome to the forum

I was diagnosed with pd last year at 47 yrs old much like yourself it was in the back of my mind but actually hearing the diagnosis from the neurologist was a huge shock

After i was diagnosed i wanted to read up as much has i could about pd  and i ordered some literature from Parkinsons uk which i found to be very helpful and informative .


#4

Lovely to hear from you Kittens3.

Waiting for an appointment with a movement disorder specialist which the neurologist was kind enough to do straight away as I work with them both already. 

Main issues are tremor and worsening stiffness in left arm.   Choose to hold off meds until the second appointment. Feeling a bit nervous about starting... Although potentially looking forward to being able to type with both hands again and play semi quavers on the piano! 

Nick 


#5

I have stiff l arm , constant tremor in that arm and internal tremor, v stiff , struggle to get out of chair and abnormal gait which is mainly from foot pain .had neuroma removed . lot of people on forum told me go for meds to stop symptoms and get on with life . 

Hopefully as increase drug will do ... Can't wait  


#6

Hi Buzbyc

I agree wiith Shelly's advice re literature from Parkinson's UK.  They have a vast range of leaflets/books on all things Parkinson's,  covering symptoms,  treatment, hints to help cope, exercise and issues on practical matters such as finance, benefits etc.

When I was diagnosed 4 years ago, it was a complete shock as I don't have a tremor and never suspected Parkinson's.   The neurologist told me nothing at all, but he just gave me a PUK booklet on medication,  from where I found out about PUK. I honestly don't know what I have done otherwise.  Everything I now know has come from the leaflets I sent for and this website.  I honestly believe that its important to gain as much knowledge as possible to help cope.

Do you know if there is a Parkinson's Nurse in your area, or a support group? Our group has some young members but  some areas have  groups for younger people.  I was wary of going at first but have found it beneficial meeting other Parkies and sharing experiences,

It took me a while to come to terms with the diagnosis,  but felt much better after learning more about it.. 


#7

I found the ebook at http://www.allaboutparkinsons.com/parkinsons-disease/pd06.php informative.  It costs 27.00USD.  Please don't think I am trying to sell it.  I get nothing and don't know the author>  I bought it about 2 years ago.  It is easy to read but I have to confess I have no idea where I put it and much of the information can be found online if you have the time to search.


#8

 

I was diagnosed on weds last week, at the end of the Diagnosis My Nuerologist gave me a dusty little blue card  from his bag with the 'Parkinsons uk' written on it, he said ''you'll find all the info you'll need here'', He had told me nothing at all during the course of a year about parkinsons barring the results of the tests he had sent me for.

I have Learnt everything else from the experiences of other's here and the info within the pages of this website.

 


#9

It seems to be common theme , you're told diagnosis and sent away . None or v little info or support . Take meds and get on with it . 

I recived copy of gp letter sat , said at end leaflet enclosed with info and tel nos . Only prob no leaflet . My next appt with consultant is April . Still waiting on pd nurse appt. 

 

seeing that you're given life changing diagnosis you would have thought the drs would be more proactive at making sure you have support and appts . 

All I can say is thank god this is here to help 


#10

 

It does indeed kittens

In the next breathe of my neuro after telling my diagnosis is Parkinsons my neuro said..

"Do you want medication many people lead their lives without bothering with it"

I found that shocking.

after all i have read about it from Parkinsons uk pages and the experiences of  other sufferers daily life here and him not telling me anything at all i could only wonder about his agenda in saying those words.

Playing down a 'life changing diagnosis' 

or

A silly attempt too save the nhs money??.


#11

Yes

Exactly the same experience here , it was in the back of my mind that i could have parkinsons  because my gp had said she would have though essential tremor but she was not convinced , the neurologist asked what my gp had said and i replied that she did not think it was essential tremor and he said she is right its not and he was more than certain it was parkinsons although it was in the back of my mind hearing the neurologist actually confirm it was a huge shock i sat there trying to hold back the tears i  was sent off with a booklet about pd and told to go with the nurse for a blood test to rule out Wilsons disease the nurse  turned round to me ans asked if i understood what the Dr had just said , i said yes i understand but i am shocked and i need time to take it in , then a few weeks later my mother also had a parkinsons diagnosis so it was one hell of a shock for  our family which did take quite a while to come to terms with

Highly recommened the literature fro Puk really helped me put things into perspective

Totally agree sea angler when my neurologist delivered his diagnosis  i remember him saying i was at a advantage and a disadvantage    given my age i would have to live with parkinsons a lot longer than someone who was diagnosed  much later but i halso had age on my side in that there was a lot of promising research going on but he was not there to give me false hope

Kittens

I was diagnosed in August 2013 i never saw my parkinson nurse till April 2014 !


#12

Shelly that's appalling 

perhaps this is something the parkinson societies should be addressing


#13

Thanks for all your comments so far.   Having worked in the NHS for over 20 years I'm acutely aware of the variability of services and clinical advice that can be offered. 

Will definitely order some info from Puk am also reading a really did book called "so I've got parkinson's disease" by Terry rimming.  I would greatly recommend this to any of you recently diagnosed if you're looking to find out more information. 

Looking forward to keeping up with all of you on this board on trying to support each other as best we can. 

Nick 

 


#14

just wanting to offer my best wishes for this new journey ...

I try to take it all 'a day at a time'. or 'live in the now' and live each day mindfully


#15

Spoke to pd nurse today. Have appt 4 nov . Said to increase requip xl to 8 mg then 10 in 2 weeks. Below 8 mg not in therapeutic range so not surprised no response yet . Said tremor is linked to emotion so need to stay calm.. Feel better with that. 

 

Also said would be surprised how many people are working at the hospital with pd . And shouldn't be a problem getting back to work


#16

Hi buzbyc

dont mean to be abrupt but you can read all the books you like but everybody with pd has similar but not the same symptoms so reading a book about somebodys experiance of pd and how they cope with it maybe be of some help but what works for one person may not work for you, i have had pd for 11yrs was diagnosed at 43 and have learned that only you know your own body you will learn to listen to it and recognise when you need meds i did,nt start on meds until 3yrs after diagnosis, if you need any help with form filling or where to get help with benefits etc you need to get intouch with parkinsons uk who will give you the contact details of your puk support worker who will be invalueble if he/she is anything like mine you will learn over time to live with pd my motto is i may have pd but it does not have me, best wishes.susan.


#17

Hi Nick & welcome to the forum,

You asked about books. I read and liked 'Slender Threads' by Pete Langman which is available from Amazon in kindle or paper formats. Pete gives a very direct & honest account of his diagnosis and the way he reacted to it. I liked it so much I gave my copy to my neuro. (coincidentally Pete uses the name 'elegantfowl' on twitter but he is not me).

Reading the Parkinson's UK publications is good advice. There are many of them and they are constantly being reviewed, expanded & updated. Most, if not all, can be downloaded in pdf.

Another excellent way to find out more about this condition is to engage with the research effort. You can start by simply participating in a few observational studies. It is a good way to learn more, help the search for the cure and help to take control.

Finally I'd echo Kitten's point about "more people working with Parkinson's than you'd think". That is certainly my experience in the 10 years since I was dx at age 39

Elegant Fowl

 

 

 


#18

coolwink

  My wife has nicked my Raybans, I sat on hers,

             Hello Nick,and a huge wellcome,you will find lots to interest you here, and not just the  serous stuff  there is a rich vein of humour and satire running through our Forum which  I hope you will enjoy, on a more serious side, I was diagnosed in 99 , and the destruction caused was huge, I used to drive many and varied trucks , excavators, Artic Dump Trucks etc, I lost all my licences so I lost my job,and many friends, the Hospital where I was informed that mr parky was alive and active in my brain, offered no solace, so I moved to N T G H   North Shields, where I can honestly say there cannot be a better team anywhere on the planet with i have nothing but praise for them, the fact that they fought hard to  obtain funding for my Duodopa means I can live a better life hopefully until a cure is available, once again its great to meet new starters as new info and interests exchange, and you cannot have enough knowledge about BLACKHEART  can you Nick, my contact details are available should you need to get in touch.

                                         Kindest Regards           FED

 ca

 I


#19

I am 45 now dx 10 years ago, I am a firm believer in putting my head in the sand when it comes to pd, for me a little information can be dangerous!  The one thing I know has helped slow down my progression is the weekly Conductive Education sessions that I attend. They are a vital part of my life. Enquire to see if sessions are available in your area, and if they are grab them with both hands. Good luck in your search.


#20

smileycoolwink

            Hello Terrific

                    Thats a terrific screen name by the way, I thought I should let you know that I am the GRAND MASTER  NORTHUMBERLAND GROUP of the BURYING YOUR  HEAD IN THE SAND SOCIETY, this ancient and prestigous organisation is similar to the group that puts fire places in for  no charge (or nowt if you are a Geordie) the freemasons. We can advise anyone who prefers to bury their heads rather than face up to or down to LIFE depending on who is doing the  burying, butt, (pun intended) both myself and the three other members have found the using the B Y H I S, METHOD OF HANDLING PROBLEMS simply results in a KICK UP THE A>>>>>>e from all whofind its the only way they can  motivate the  person who has chosen this  unfortunate lifestyle,I myself spent over 6 years buried, this is very incovenient when it gets to mealtimes chatting  to friends and family having your hair cut and after a visit from the retiring GRAND MASTER I became a convert, his words influenced my enthusiasm for not being a head burierererr, and I worked my way to the top, (no one else wanted the job)  I will never forget his powerful words he was actually at the point of SPONTAENOUS HUMAN COMBUSTION, as he pleaded and begged me too turn my back on head burying,,,,thats difficult when your heads buried in sand,,, yes indeedee er, emm he said erm nope wasnt that  eeehm,bugger nope bugger I HAVE COMPLETELY FORGOTTEN, ,my wife who is lovely to look  at, especialy in the new underwear  I bought her for her birthday,,, sorry she has just walked into the bedroom where  I am typing this post. Now for something completely  different I didin fact ignore all the symptoms of bowel  cancer, passing blood constpation Dai Arear,?? pain discomfort until my dear Kingsnake Cobra x Velociraptor(, she morphs into various hideous trrifying or even terrifying beings depending upon how I am behaving  ) forced me to go for a examination, and after 6 visits and the removal of polyps I was given the all clear, I was also given PARKINSONS, as before the exams I was fine but after the exams I was exibiting all the symptoms of parky, and now it would seem to be the case that some people are likely to suffer damage when a genral ANNE ES THETIC, lovely lady is used.

                                    Well im off now terrific I am going,, to  err, no emmph going to err nope cant remember ,beloved got her angry head on so take  care, nice to make new friends BYE FOR NOW

                                                                FED