Not yet diagnosed officially


#1
Hi my name is Michael, I am 74. I am in a position of not being actually dignosed with PD yet, but have all the symptoms (except the tremble) I was taken ill last October 2011 and spent 3 days in hospital undergoing tests for a mini stroke. Ever test came back clear and eventually I was just sent gome and told I was ok. My wife and wider family and I have spent the last year knowing that I am NOT right. On visiting the hospital for a urine test to do with my prostate cancer, a nurse asked my wife how long I had they diagnosis of PD! She said I didn't hsave it - then said actually why do you say that. They spent 20 minutes away rom me chatting about symptoms!
My wife returned to me and told me what had been said and we both felt relieved! At last there was something else we could go to the gp with - we did this and the GP has referred me to the neurosurgeon (3 month wait, appointment on 3rd December 2012) but agreed that it did appear to be an almost certainty of PD.
What will happen on that first visit - how do you all cope with the diagnosis and telling family members? (We are not telling our children or grndchildren until it is confirmed)
Sorry if I have waffled but any advice would be appreciated.

#2
Welcome to the site . It sounds very much the way most people who are evntually diagnosed with Parkinsons .

What are your symptons , although very often you don't realise what they are .

Generally they might ask you to touch your nose , walk up and down a room .

My husband was diagnosed at the age of 70 but had not been right for quite a few years , very painful shoulder , balance , tilting to one side . slow to answer ,became much more anxious , blank look . I even thought he might have had a little stroke .

Some people I hear have scans but he didn't , no blood test just general appearance . While I was in the waiting room picked up some information leaflets . You appear to have seen this , otherwise you wouldn't have been on here .

We have been open with family and friends since day one and I work at letting as many people understand a little more about it .

We knew absolutely nothing about it . WE CERTAINLY KNOW NOW LOL ..

you will find lots of support on here and can ask any sort of questions.

#3
Forgot . Difficulty with handwriting . Very small , Can you draw a never ending circle ?

#4
Johnnie Thank you for responding - I am Lynne Mike's wife and put the last post up on his behalf. Yes we saw the leaflet in GP's on Friday and me being me decided to explore all the information.
Mike has not been right for about 3 years, we originally thought this all started last October but on looking back on cruise DVD's for 2010 we can see he had dropped over on one side sligtly, had that vacant look when sitting quietly, slow in answering people (especially new people) He has always had a keen sese of humour but that has been tainted.
Last October he suddenly dropped over to the right, shuffling his feet and when turning round almost runs on the spot. His writing (he has spent his life in forces admin so had lovely handwriting) became really tiny and unreadable -so much so that he will not write (except crosswrds)his skin is so dry but the worst symptom by far is the loss of control over his bladder. After being treated for prostate cancer 10 years ago we thought it was to do with that but after many tests was told it wasn't - we have the answer know it is part of PD. Sounds strange but it is a relief to both of us but especially Mike as he could not understand why he always felt confused about doing diy or things that he used to do - he explains it by saying he has lost his confidence in being able to do any of these things and because he is slow in doing them feels that he is incapable. Once we have the proper diagnosis and he is put on drugs I am sure he will be better in himself (anyway I am hoping to get my old husband back) so any information/advice you can give would be really appreciated - I will throw myself into helping 100% as I need to do with anything like this and have already found a monthly meeting held by us for Mike to attend. Thanks again hope to hear from you soon.

#5
Hello Lynne , My husband is 78 and I am now 75 , we have been married for 54 years .
We are about 7 years down the Parkinsons road can't say it has been easy but have gradually found our way around the system !! . Never ever thought I would use those words , if you wish to be in touch privately I will let you have my e mail .

Except all the help you can get to make your life easier .

Glad to hear he is still managing his crosswords , my husband has been struggling with that but we now do it together . He was the one to teach me in the first place lol ..

Have you been to any of the meetings yet , I cannot get my husband to join one .

Have you joined the Parkinsons UK , they send out quarterly magazines where you can find lots of tips . Think I could write a book of tips now lol Good luck to you both ..

#6
Hello (Johnnie's wife, you haven't told me your name) LOL!
No, as Mike has not been officially diagnosed yet we have not joined any groups or anything.
Mike and I met 25 years ago, he was separated and I was in an unhappy marriage, we became more than friends in 1991 - although I believe from the moment we met we were destined to be together - he is my soulmate, he is some 19 years older than me but that has never bothered either of us or our children. I feel a little helpless with all this because I can't make him better, but, since finding out more about the help through Parkinsons Organisation we both feel better and more prepared in handling whatever may come our way.
I will encourage Mike to join the local meeting and will volunteer to make cakes etc for it - he loves it when I cook for other people - lol he even promises the other dog walkers a cake or two!!!!!
Yes it would be good to email you privately - perhaps not at the moment but once we have a definite diagnosis which should be in December, unless I can get him an earlier appointment.
Thank you for your kind words, you don't know how good it is to hear there is a light still on after diagnosis.:smile::smile:

#7
As for the bladder problem !! .. My husband doesnt have much of a problem with that except at night . He has difficulty during the night especially getting in and out of bed , which meant that I also was having a very disturbed night so I mentioned it to the GP who put us in touch with a Nightingale nurse . The rest is history .

She arranged for him to use a night bag via a sheath , we now both have a more restful night f course you can have day bags as well .

Dry skin goes with Parkinsons once again Gp recommened Head and shoulders shampoo . Thought it would be much too strong for his sensitive skin but was proved wrong . It helps the scalp, eye brows, face, and even inside the ears .

In my husbands case the confusion is more like his head becomes scrambled and converstaion all to much . If we have company I have noticed that when a discussion gets too much he changes the conversation , he is ok if he is asking the questions .

It took quite while before we had our first appointment but now we usually see the consultant every 4 months , fortunately we do not live very far from the hospital .

Some people get to see a Parkinsons nurse as well . We have never been offered that .

#8
Keep at them about the appointment I know how difficult it is with the cutbacks .

We have been waiting for a heart scan for My husband for 3 months and it doesn't look like we will get one very soon .

#9
Hi michaele
I'm 53 and was dx last November.i went to docs with a black toe nail and basically came out with an appointment to see a Neuologist .he suspected parkinsons.i went home and dx myself of the Internet I'd had most non motor symptoms over the last 15 year.id put. Pain down to arthritis ,no wrinkles aa lucky,etc
When I went to see the neologist he watched me walk towards his office?hed already dx me before I got in.(I didn't swing my right arm and held it up a little) I had to draw a spiral,and touch thumbs and forefinger repeatedlyat the same time,I was slower on the right.same with lifting the leg up and down.he said yes you've got Parkinson's well put you on medication with the less side effects see you in three months.next
I remember thinking hold on I've just had my whole life changed and he just treated me like I'd gone in with splinter.its good you've got a great partner by your side.
The main thing which is the hardest is not to worry,I've done plenty and it gets you nowhere.once dx your symptoms may get worse,mine did thinking the worst the body reacts bad..as a warning avoid tramadol as a painkiller it gives you more side effects and makes you feel lousy.enjoy today and do the things you've planned to do now cause you never know.i do hope this helps
John
Ps start your meds after Xmas so you can have a drink

#10
My husband can only take Paracetamol which unfortunately isn't a great help . Anything stronger Tramadol Co Codamol causes dreadful side effects .

The Consultant told my husband to carry on having a drink . At least it makes you feel a little braver lol . You know how much if you are sensible .

#11
My husband can only take Paracetamol which unfortunately isn't a great help . Anything stronger Tramadol Co Codamol causes dreadful side effects .

The Consultant told my husband to carry on having a drink . At least it makes you feel a little braver lol . You know how much if you are sensible .

#12
Hi Micheale and wife
welcome as you have had advice as above re symptoms you will find a varied explanation to each diagnosis I presented with tingling in my bottom and was referred to orthopaedic dept who suspected a tumour to my spine and scan's had not confirmed this they said it was due to disc's in my neck, some 1-1/2 yrs later when the tremor was more noticeable I was told it was a possible Brain tumour horrified i was referred to neurology I saw a very un pleasant man that in less than 5 mins told me it was Parkinson's disease I am a nurse and so is my husband and the shock on our faces said it all but the awful man said he still did not exclude a Brain tumour. So I had a scan no tumour so Parkinson's it was he then referred me to my neurologist Dr Bandmann in Sheffield a wonderful man he had patience and explained every thing I was 49yrs at the time we have had some trouble with medication but he has introduced me to a Parkinson's nurse and this site and Parkinson's uk. if you are diagnosed use this site go to the local meetings talk to as many people until you have answers to your questions and then live each day as it comes as you will have good days and bad days but you sound a strong couple and your wife has taken the first step for you well done wife and if your in Sheffield I will buy your buns good luck and welcome again. I also can waffle lol

#13
Hello.

So, your in the thick of it so to speak...

There are things I want to say to you but rather than do that, I would instead like to refer you to my own first entry on Parkinson's UK forums. It is entitled; Just an experience. My name is David and I am a newbie. Included with my forum entry is my email address or, if you would rather, I shall be happy to respond to you through the forum.

Warm regards
David

#14
:smile::smile:
What can we say to Potter64130, Johnnie and Mommah.
Thank you so much for your replies, it is wonderful to feel that we are not entirely on our own with this life changing condition hanging over us. I (wife) had meltdown today, Mike was brilliant and understands my frustration that in this instance I cannot help him and put things right! I spoke to our truly trusted friends and feel better that someone else can help support us until we get the actual diagnosis so as not to worry our grown up kids or grandchildren - whole heap of reasons why, daughter living abroad, grandaughter just started uni, broken relationship for another daughter etc. But mostly thank you to you, I am sure we will use this resource a lot in the future. Unfortunately Mommah we live in Kent so won't be able to let you have a bun! LOL
We certainly will make the most of each day, didn't realise you could not drink once on the drugs, ah well not the end of the world....if husband keeps telling himself he doesn't need a good beer whilst watching football he will be ok!

#15
Hi
Do not say never I do have one now and again but I know what I can get away with. When I was first diagnosed i had a patient that was up for some research we were going to go to the pub to trial which alcoholic drink was best to stop the tremor and how much we had to drink as when I was out one evening with friends I noted the tremor settled after 4 Peroni's as you can imagine my research did not get of the ground as he told his wife who wanted me to show her where the evidence was to trial this , my patient was 72yrs irish with a 70yrs old wife, we did laugh that day I even had a bottle of whiskey given to me for christmas by them, I did not have the heart to tell them I can not stand whiskey so I gave it my husband. so trial and error if he like's a drink now and then. Shame about the bun I will have to see if there is any good bakers in my Parky group.