How it all started


#1
(2006)When going walking down the local high street, a lower back ache would develop, but after sitting down on a public bench for a very short time, the back ache would disappear and I continued with my shopping,after a while the back ache would return and the process repeated. On appointment with my GP,she noticed that my right leg was shaking, but no more than it shook when I was waiting for the examiner's verdict after my driving test many years ago. I may be a nervous person. She prescribed selegiline, and made for me, an appointment at the local neurology department, where Sinemet CR was prescribed in addition to the selegiline. I would like to know of other persons' experiences of "how it all started" and anything similar to mine.

I was hoping to join the RiverDance troupe :grin:

#2
dragging my left foot, i tripped over a paving stone in halifax. after 6 months of physio, the physio noticed a tremor and ....
i had spent 3 years before complaining to GPs and physios about tendonitis but they never worked it out.

#3
I had a weak right hand. GP was very unsympathetic and said she believed it was because I disliked my job. Had further aches and pains all over and she refused a sick note. Went to private physio who told me to go asap to surgery as he suspected something not right. Went to another GP who referred me to Neuro.

#4
So many people have the same thing happen to them . They go to the GP and come out treated for someting quite different . My husband was firstly put on BP medication and told to go to an osteopath which he did . He had had a problem with a very painful droopy shoulder for most of his life he was 70 at that time .By then it affected his hands /fingers you name it !!!..

He eventually return 3 years later in desperation to be diagnosed with Parkinsons .

#5
i was diagnosed with regional pain syndrome on my left hand,due to my job the doc said and stress due to lack of sleep and shift work,the doc finally got fed up of me and sent me for a dat scan and mri scan and neurologist said parkinsons within the first five mins of my appointment!

#6
Been diagnosed a year now come January (just as I turned into an OAP!- nice one!).... before that though.. (i) difficulty getting my left arm down the sleeve of anything with a left arm in it!....(ii) lack of swing in left arm (thought due to balancing after breaking knee-cap and walking difficulties until healed - but arm didn't!).... (iii) fingers on left hand started seizing up - hand specialist said "swan neck finger"...and (iv) lots of the dreaded anxiety/depression - another insidious symptom of PD..... All these quite logical - but you know when YOU know something isn't right!?

Fortunately got lovely GP who persisted with and for me - first neuro test consultant non-committal... later that year GP not happy and went private and saw absolutely brilliant consultant who lives and breathes PD - first reaction to diagnosis was almost elation 'cos they'd listened to me and now I could start being treated... but elation (naturally) didn't last - and obviously being prone to anxiety/depression lots of dark days trying to understand/come to terms... but don't know that you ever do - like so many say:- live with it, "entertain" it...but don't let it define you.

Not done too badly considering it must have been around for quite a while - get stiff and slow... muscle rigidity mostly in torso (which seems to affect breathing? anybody else??)..and days when I feel "down"/lacking confidence/self-esteem... BUT - got you lot... go to the gym.. got exercise routine at home... joined a choir... got lovely wife and (grown up - well, in numeric terms!)kids.. two cats.. an old Mazda MX5... and a stock of G&T.. Honestly? PD - DO NOT LIKE DO NOT WANT! - but just look around!! Hope your New Years are kind to you...

#7
Well done Bursadavid .. Keep that spirit going and I do realise how hard it is for you . Yes my husband has the breathing problem and all the other symptons you wrote .
I think most people find it hard to come to terms with in the first place ..

Your consultant sounds like my kind of person , I can't let it go .. I am searching ways and means continually so that I can understand and help support my husband . After all if something helps him it helps me at the same time . I also like to share anything that works for us with others . I appreciate we are not all made the same and others might not be as able to cope as well or even in some cases as interested as myself They might just want to get on with their own lives but inmy case my husband has been my life for for 55 years ..

By the way I agree with you about exercise , unfortunately my husband has got that he is not as able to do as much . he is now 77 . He WAS a man who swam most days of his life .

He has a brother who also has Parkinsons .

#8
It is mid March, 2011. It is cold enough that I am wearing mitts. The people who I pass cannot tell that inside my right mitt, my hand is doing a tap dance. I am on my way to the neurologist. I cannot "think" my way to a stable hand, only a tight clench will stop it. I sit in the waiting room and am surprised when my hand becomes normal when I grip my pocketbook. The doctor is late and I read 20 pages or so without a problem. He arrives and I can see he is older than me (65). That's good, I decide, lots of experience. He calls me into his office and has me sit on an examination table. I tell him my story and he tells me to put my hands in my lap, palms up, and count back from 100 by 7's. That's easy, I tell myself, 14 numbers and I will land on two. With confidence I begin and the numbers come to me easily and I quickly finish. Throughout, my hand is moving independently. He tells me to get down and indicates a chair. I sit down. "It is early stage Parkinson's," he says. I say nothing. "You can get a second opinion if you want, but I am confident in my diagnosis." Again, I say nothing. "Do you have any questions about the condition?" No.

He gives me a copy of an article torn out of a magazine and I leave. I don't bother reading the article. I have heard of Parkinson's Disease, but he might have told me, "you have a cold" for all the impact his diagnosis has had. Whatever it is, I can learn to live with it, just as I have learned to live with "fibromyalgia". It is only later, after a couple of hours on google, that the diagnosis hits me square in the face. I have an incurable degenerative disease. I can only get worse and there is nothing I can do about it. I read that the symptoms can be controlled (that's good!) but the positive effects of medication can diminish after prolonged use (I don't like the sound of that!). It is different for all patients and can progress slowly in some (that will be me!) Exercise helps (got that covered!). Eat dark chocolate (love the stuff!). Try fava beans (who eats these things! I pass.) Avoid stress (I am a lawyer! Any suggestions!). There are thousands of articles and I devour several dozen but the best site I find is a Parkinson's site in the United Kingdom . The people with Parkinson's there give me hope and that is where I am today. For some reason, I am not upset. I don't think of my future as being bleak, thanks to these people who have lived with the disease for some time. From now on, parkinson's no longer deserves a capital "P".

#9
hello....for me it started with tremors the week I decided to divorce my ex back in 1991. For about 18 yrs all I had was the tremors, and as I was still raising my teenage children when it started, I just ignored it.
Then in early 2010, I began to have muscle spasms in my feet/legs. Very strong, and painful, as I was going to sleep, or upon waking up. Then I had spasms a few months in, in my left hand. When it was at rest. Then it went to my right hand, and now sometimes in my face. I first went to the neuro. in May 2010, when this got worse. No dx -just possible Parkinsons. I've had numerous other illnesses..being treated...noted in other postings. I also developed asthma in 2007, and since Oct. this yr have had great difficulty in my breathing....which I see BursarDavid mentions. Mine sounds like what he is experiencing. I was not aware this was a PD symptom till this past week, when I researched it. I have been tested for heart troubles (fine), and next week for my lungs...but am to talk to the PD nurse -today, hopefully. SOmedays it is bad enough, I would like to have oxygen available to me.

#10
Nothing other than "thank you" so much everybody.... Where would we be without one another - where would I be without my family, personal friends.... and you!!

#11
Hello Turnip
I was following your thread on being dx I was am all left sided probs but it went on for 2 years trapped nerves ect I noticed you fell in Halifax I am in Queensbury/Clayton and have fallen in many other towns:grin:
Do you take part in any local pd stuff I went to a newly dx group and found it hard work cheers Adrian
ps Im 48 married with 2 kids

#12
Sorry everone I posted in the wrong place again:flushed:

#13
Mine started with relatively minor problems. Lack of swing in my right arm. Trouble cleaning my teeth, writing small,tension in shoulder. But I knew my right arm felt as if it didn't belong. Also lack of smell.All the other problems I put down to stress.I was a carer for my parents. Luckily I have an excellent GP, who said there was something wrong and sent me to a neurologist.

#14
:grin: Hi all :arrow_right: mine started with what seemed random but reoccurring problems, I'm not a goin to the doctors type guy so largely put up with symptoms (folliculitis;sweats and insomnia) these began to get worse so went to docs who gave me that good old standby 'it's your age' get used to it.

When the insomnia got to the stage when I was getting only 12hrs per week went back had a blazing row and also shoved my now tremoring hand under his nose, he reluctantly referred me to neurologist who after 10 minutes told me he was 99% sure I had PD didn't really register for about 6 months,that was 4 yrs ago progression appears relatively slow at the moment (phew) and we do what we can to accommodate the beast, but never give in :sunglasses:

Keeping active mentally and physically helps enormously and my life remains good.:grin: