Firstly I hope you are all having a pleasant start to the week despite the not so nice weather.
A little bit about me and I apologise in advance for any typos, gone are the days when I could type up to 90 wpm. Anyway I was diagnosed last September with Idiopathic Parkinsons. My left side is mainly affected with little or no control at times over my arm / hand. I also have a left sided limp and over the past ten days my head has started movement which is all new to me.
I feel so alone with these changes as I was prescribed Madopar last year and had nerve conduction study in September which was clear, but I haven't yet received a follow-up appointment from the Locum Consultant I saw at the time. It's almost as if my case has been lost in the system. The secretary is on holiday until tomorrow so I will chase her up on it yet again once she returns. The Locum works under the regular team there so even, if he is no longer at the hospital, surely all cases he worked on should be passed on.
I felt so isolated with my worries that I came online, had a search and found this site/forum. Hope it's ok to hang my hat here with you all.
Welcome to the forum , it can be hard work having Pd but you have come to the right place to find support and information, we all have bad days when it seems that you are the only one that has it and that no one understands how you feel, sometimes the lack of empathy and advice from the doctors can be appalling but if you read the posts on here you will find out most of what you need to help you cope, try calling the help lines as they con help point you to the support you need and what help you can get.
Have you got a Pd nurse? If not then try and find out if there's one for your area, in my experience the Pd nurses are fantastic,
Well must go now so hang your hat on the third peg from the left and have a good look around, make yourself at home and dive on in, Live well. Cc
Hi Joanie,
Welcome to the forum. As Cheshire cat says there is a lot of info on here. Some will relate to you and some posts you'll just want to join in for a chat.
I agree also that the Pd nurse is a godsend and connects you to the consultant. Maybe your hospital has one and she will recommend a different consultant.
Have you joined any local groups? It can be daunting but sometimes you find an activity or group that fits you. It can really help. Good luck!
Have used the helpline on this site and a pd nurse phoned me back as have been struggling to get hold of doctor and pd nurse now known as the scarlett pimpernell and his amazing asst. Was really helpful until I get a next appt. I have just joined local pd group great people and just pick what I want to join in with , useful to pick up some tips. I have idiopathic pd too, now 8yrs into the journey. I have a right handed tremor , right leg needs some serious concentrating to walk almost normally a physio is good I waited until just recently to self refer am told by others get one as asap start as you mean to go on. lots of lovely helpful people on here for support and a giggle. as cc and divine r have said welcome and browse the threads and ask away. xx
Thank you for the warm welcome Cheshire Cat. You're right about some (not all) GP's. Gone are the days when your Doctor knew your issues without having to look at a screen. Thankfully I heard from the PALS Dept at the hospital, spoke to a lovely lady who is chasing up Neurology and said I should hear back by Thursday. Felt so much better after her call. Hope you're having a pleasant day Cc
Hey Devine, nice to meet you. I will certainly look into finding myself PD Nurse. I haven't joined a local group yet. There are so many things I need to look into.
Hiya TeeHee (love the name btw), I'm hoping to hear from Neurology this week about my follow-up appointment but will bear in mind the helpline number. You know, I was in a really dark place over the past week or so and already, just being able to share with you all has already lifted my spirits. Thank you all so much xx
Hi Joanie,
Glad you're feeling better in yourself. It takes time and at the beginning you do feel alone. It also takes time to join things. Pace yourself as I jumped into a group too soon. They were lovely people but there were people of all different stages of Pd and it was overwhelming.
I think as you accept Pd (if that's possible) you can move on.
Most of us here are not ready to give in so come and moan, groan and share what you think on here!
So pleased you feel better, its tough, but there is still a life to be had and enjoyed. my neighbour is a miserable and he has no reason to be, at least we have a reason to be miserable but choose not to be. (well most of the time , anyway the occasional pity party is allowed). stay in touch us parky people are never far away. x
Evening to one and all. Thought I would update you here with regards to my appointment today.
Off to a great start as saw the Lead Consultant (felt like royalty). Some changes made to my Madopar, increased dosage to 2 x 50/12.5 soluble in the morning, 100/25 nocte and twice during the day of the usual 50/12.5 capsules. Also received my referral letter this morning to see the local PD nurse.
Felt tons better today, I think yesterday must have been a blip which we all have from time to time.
So...all in all a productive day and tomorrow I must confidently call DVLA to inform them of my situation. Fingers crossed all goes well.
Morning all, how's your days going? I was up and out early doors taking hubby to his Diabetic Clinic appointment.
Well, I've filled out the online assessment which has now been sent off to DVLA so will now await further instructions from them. There'll be no worrying here though, what will be will be.
Hi Joanie,
You seem to have a great attitude. I agree that what will be will be. We've learnt that a lot of things are out of our control. Concentrate on what we can control. At least that's what I try to do. You have to remind yourself every so often tho.
Thanks for dropping by my little abode on the site. Hope you are ok there. I read you're having problems with your knee. Snap. My right knee won't stop cracking and it kills. Ouch!!! Definitely the change in weather.
Running on concrete is extremely bad for your poor knees. That's the reason I've always preferred brisk walking for exercise. Not as heavy on my old knees.
Hey DivineR, thanks for stopping by. How has work been this week? I'm enjoying my week off however I am missing my customers. Looking forward to getting back into the swing of things next Wednesday.
Good Day to everyone and hope you're enjoying your weekend. Went for lunch at a Chinese Buffet which was delish. A few chores done at home and now time for a hit date with my couch and the TV
Hi Joanie,
Work fine. At the moment I'm in different departments. Not sure they know what to do with me. I'm enjoying it. Tiring though it is, it keeps me active. I was in my last job for 25 years so a change was needed. Hope you have a good week back to work.
Oh it makes me a incy wincy teeny weeny bit upset when my brothers and sisters on this excellent forum get lost in the machine, not only do you have the horribleness ?? of BLACKHEART to deal with and believe me having butted heads with parkyy for 18 yrs and the horribleness is really,, not nice especially when admin either sends a appointment and when they check you through, " oh yes mr fed just go and sit and wait in room 5 so you wait and wait and and dandada wait until no one is left in the whole HOSPTAL THATSwhen the secretary peeps around the corner ah er hmm MR FED DO YOU HAVE YOUR APPOINTMENT CARD ,, one moment (to add to the 10000000 others i have just wasted,, well you know the rest,, sorry I must go now beloved needs to shop all comes to a stop whe beloved wants to shop
will get back to you asap Joanie oh and wellcome to the best forum
I have been reading your post and being treat the way you were is incompetance of the highest level, the trouble is there are PD Docs who dont quite grab the intense fear and discomfort we suffer each day the full on cross section of symptoms each one producing different re actions in different patients, i am sorry and angry, I have to say mainly because I have a first class team looking after me and the story I was telling in another post was not PD related it was in relation to Prostate cancer, and I sat for almost 2hrs only to be told ,"you should have been hear this morning", so I showed the secretary my card which showed in plain english 3 15 pm, (oh someones made a mistake now NO ONE on planet earth has made more mistakes than OLD FED so I never flare into rage when I hear mistake but I was shutting down very rapidly and had forgotten to hit the boost button on my Ddopa pump so it was to little to late , my speech failed as all the anger and frustration powered inward I became so ill I heard talk of overnight,," no no no overnight thanks I managed to say,, I want to wake up in the morning, so it was left to my wife to do the telling off , they even said the nearest appointment was nearly 2 months away, rapidly shortened to 1 week when beloved went up a gear,, things went very well at the next visit, but as with your very unpleasant experience it causes massive stress when the admin fails BLACKHEART can hit and hurt in so many ways you dont need this sort of thing happenig to add more worry. I hope its all sorted now.
Hey Joanie, hope you had a good wkend and even better week ahead. Still the same on the knee front sadly. Hope i don't Kneed (sorry, terrible i know) a kneeplacement (even worse, extremely sorry). Glad to hear you enjoyed a good Chinese meal and sometimes nothing better. Hope your fully recharged for your start back Wednesday. I hope you have had a good Monday and not much knee aches. Catch up with you soon.
Lovely of you to pop in my friend. Pull up a chair and make yourself comfortable. Sorry to hear you started your relationship with Parky 18 years ago. That's a long time. Even though I was diagnosed last summer, I'm pretty sure I've had the condition for some time prior to that.
Oh dear, the dreaded waiting room WAIT!!! I hear you on that for sure. However, as I used to be a Reception Supervisor at a GP Practice, I know how these appointments can overrun BUT, COMMMUNICATION....COMMUNICATION...COMMUNICATION is imperative. It kind of eases the blow when we have to wait for an extra hour or more etc.
I concur with your comment regarding incompetence of appointments being lost to follow-up. I know people are only human but when I worked at the surgery, if a patient called to enquire why they haven't received their hospital appointment yet, I would be on the phone immediately with some form of update from the Secretary so I could call them back with any info. My GP showed utter lack of interest whenever I mentioned I was still waiting, passing the onus back onto me to chase up. Which, I don't mind it was just the little problem that I WASN'T GETTING ANYWHERE!!!! Anyhow, all resolved now and things are now moving in the right direction.
Aww bless your beloved for putting her foot down firmly. That's hard to believe a whole 2 hour wait without anyone thinking to query your appointment details. Hopefully all went well when you did attend?
Hiya JP *waves*
Thanks for the laugh. I 'kneeded' that haha Yep, I'm full recharged and raring to go come Wednesday. Nipped into Town earlier and think I unintentionally drifted into a bus lane. Seriously I didn't realise until too late. I guess a nasty fine may be on it's way to me. Hubby will flip
Is it sods law that appointments for horrible things like anal endoscopys and internal prostate exams , swallowing HORRIBLE STUFF to make your insides light up like a Nuke powerstation, which leave you with projectile vomiting and welll projectile at the other end also, why is it we have to feel bad in order to feel good . also I am having dreams of the most vile incarnations too horrible to mention here my friend but when I say I wept allmost the whole day yesterday any litle thing sets me off and even when dozing the same dream emerges and off i go again,, do you have this.
