Your first inkling


#1

What was it that gave you the first clue that you had Parkinson’s?
I am a teacher and my pupils constantly complained that my writing had got too small.
There were other signs that when put together made the jigsaw puzzle whole but I was very good at hiding them.


#2

Weirdly I genuinely didn’t have a clue I had Parkinson’s until I was told by the neurologist even though I presented with a one-sided tremor, which should have been a dead giveaway. In spite of all my googling I’d managed to completely convince myself that it wasn’t Parkinson’s.

Looking back the first symptoms had actually appeared years before in the form of crippling attacks of anxiety - which had actually already caused me to leave my teaching job. Also loss of sense of smell but I didn’t know that was linked to Parkinson’s. Once I was given the diagnosis it was all blindingly obvious though.


#3

Is loss of smell quite common?
One very strange thing. I have always been a savoury eater.
Now I crave sweet things all of the time.


#4

I believe that loss of smell is very common. I think mine has improved since I’ve been on medication though.

My tastes haven’t changed though - I’m also a savoury eater and still feel that way.


#5

I didnt know until I was diagnosed early last year. I had numb feet three years before that, and my taste changed. Tea does not taste the same now, and I developed high blood pressure, high cholesterol, and had two tias. I could have done without all of that! Thankfully, chocolate tastes the same…


#6

hi i was taken to hospital of a suspected stroke in november 2017
turned out it was a TIA
Now ive been diagnosed with parkinsons
ive gone off crips and other simular eatables
but chocolate i never could
i also have unsteady blood pressure it cant make up its mind where it wants to be
im an avid tea drinker
call me mr tetley

take care
keith


#7

I’m eating bars of chocolate in the middle of the night :owl:
Ice cream,cakes,biscuits,sweets.
It’s a craving almost.
Is it the condition or the meds?


#8

maybe both .
some meds increase the pleasure areas of the brain
i wake up and eat a few chocolate biscuits in the night
even a glass of coke anything sweet

if it aint killing me i aint going to worry about it
all we can do is we adjust
unfortunatley it isnt going to go away

take care
keith


#9

I really thought it was just me.


#10

Hi Singing_Gardener

I contacted my GP some years ago when I started to have a tremor in my left hand. He said there were no tests for Parkinsons, it probably wasn’t that, and not to worry about it. Some years later in December 2017, a different GP took me more seriously and suggested seeing a neurologist. The NHS waiting time was a number of weeks so I found a private neurologist and saw him a week later. He did several “tests” and indicated that he thought it was Parkinsons and that a Datscan was the only way to be sure. I wanted to know for certain so agreed to have the scan. Surely enough it turned out that he was correct - I have moderate Parkiinsons and he thinks that I have had it for 5-7 years. I try not to wonder if things would have been different if it had been investigated more thoroughly earlier. I started on Sinemet plus straight away and have now added Rasagaline to the mix.

I have had chronic arthritis for many years and find it difficult to decide where the problems are coming from. - A or P? I lost my sense of smell years ago, as did my father, but now it has returned (Aren’t hyacinths wonderful?) My neurologist was pleased with my progress and thinks he won’t need to see me for six months unless I have a problem.

So - things are proceeding steadily. The main difficulty for me is wondering how Parkinsons will develop and what to expect.

Last week my movement was difficult and quite painful. It was quite a while before I remembered that this is normal for me at this time of year as the weather changes, and the barometric pressure fluctuates. affecting my arthritis - the same happens in the autumn.

Symptoms don’t come with labels so guesswork is involved, part of the challenge I suppose. Currently I think the arthritis is my worst problem so Parkinsons has been pushed into the background - till next time!
Anyway - getting my hair cut on Thursday, so that will cheer me up.

Best wishes to everybody - keep smiling if you can.

Audrey


#11

What I self diagnosed as fibromyalgia because of a serious fall in 12-1989 eventually began to make me wonder if I didn’t have PD. Some of us with PD actually do have almost constant pain in various level-attacks! (of course I would be one!) The stiffness was my next inkling but I didn’t recognize that with PD either. The very mild tremor, choking on my own saliva were definite signs, next. I NEVER went to any doctor about any of those. I did go to a chiropractor which by about 6 or 7 years after the accident, I realized I was worse after an adjustment so stopped. The tiredness and stiffness by then was more than I could have imagined, if I had tried! Late 2007, I went to a doctor and told him that I thought I had PD he assured me that I didn’t. But I failed to tell him that I had lain in bed for hours to be able to go see him. Then a couple months later, in the spring of 2008, I began being short of breath. I have never smoked etc. I went to the ER after suffering for a few days. They treated my symptoms like it was my heart, naturally. But in the short of this long story, it was PD! And so many more symptoms have arrived over the years. Actually I am doing well. Slow, hurting, tired, tremors, worsening but still slowly. I have been blessed. I have NEVER taken PD meds. Meds make me soooo bad off that … well, we won’t go there. I take ibuprofen, some acetaminophen arthritis,probably not even 2 weekly and a mild nerve pill usually a 1/4 of the dose is all I can cope with and that is rarely 4 times a month. My husband is an UNDIAGNOSED PDer!!! But anyone around him for half an hour can NOW diagnose him. He does have essential tremor and that throws everyone off. He even now admits that he has PD. His first symptom was a stiff neck, years ago. We have been married 50 years and are both 73 with 4 adult children with tremors!!! Sorry this is so long but I need this today. Thanks.


#12

Hi Audrey

I agree that hyacinths are wonderful, although my husband complains the scent is too strong if I have them in the house. I love indoor jasmine too.

I also was referred for a datscan to confirm the diagnosis but had already decided that the neurologist was right.

Also agree that not knowing how things will progress is a worry but am trying to stay positive.

Clare


#13

I noticed that spring (primavera) was upon us here in Spain when I caught a whiff of bougainvillea in the air the other evening.
I am also still the house expert at detecting when my grandson has filled his nappy😷.
Two very different smells :joy:


#14

That’s useful though! One of the problems I have is that I don’t notice when my grandson needs changing!


#15

Hi Hubby and Singing _Gardener

A sense of smell has many benefits, both pleasurable and otherwise. Sometimes it is good to know that you are avoiding something rather unpleasant.I am keeping my fingers crossed that it stays with me for some time - I think I can cope with the bad smells, as long as I get the benefit of the sweet perfumes.

I have started having some strange dreams - do you get smells in dreams I wonder? I haven’t noticed any yet.

Best wishes

nine
Audrey


#16

Strange and very vivid dreams seem to be a part of pd.
I never used to be able to remember mine.
Now I mostly can.


#17

I went to the Doctors in January as my left hand was trembling. The Doctor asked me what I thought was causing it and when I suggested Parkinson’s she said it wasn’t that as only one arm/hand was trembling. She said it was probably a trapped nerve and referred me to the consultant I had seen a few years before when I had neck problems.

When I was told I wouldn’t get an appointment for at least 15 weeks I booked physio privately hoping it would help. It didn’t, and I started to feel very unwell and paid to see a doctor privately who straight away said I had Parkinson’s.

Cutting a long story short I am now on Sinemet and feeling very sorry for myself.

I had just started looking after my granddaughter as my daughter had gone back to work, she now goes to nursery as I don’t feel strong enough to look after a toddler all day, ok for just an hour here and there.

My other daughter is about to have a baby and this should have been such a happy time.

I do not like this anxiousness I feel, although I now know it’s part of the disease.

Early days I suppose, I need to get myself into a better frame of mind. Most people on this site are very positive so perhaps I will be soon.

Margs


#18

A slippery slope that feeling sorry for yourself.
Parkinson’s may slow you down but it won’t stop you unless you let it.
My big thing is not to fret or dwell on the things I can’t do anymore, but to do the things I can do really well. Like being a fantastic grandad.
My bywords have become " No hurry" and " No rush". Even my 18 month old grandson says "No rush grandad " if I struggle to get out of a chair.
Be forceful.
You may not be able to go as fast as you used to but you’ll still get there in the end.
From the age of 14 until my diagnosis I had lived my life at breakneck speed.
Professional footballer,kick boxer,marathon runner,exceptional lover :sunglasses::sunglasses::sunglasses:LOL.
I’m now nearly 58 and getting accustomed to a different way of life.
You have to think of you.
Make your life as comfortable as possible for yourself.
Make others work around you.
Fight the bloody disease on your terms.
Fight clever.
Good luck!!!
Hubby.


#19

Hi Marg

I think most people feel pretty low initially after getting a PD diagnosis but you will adjust to it and realise that there’s still so much you can do.

It must have been very hard having to give up looking after your granddaughter every day but hopefully you’ll still be able to see her lots and have great times with her. I have a grandson who is nearly 2 and would also feel unable to cope with looking after him full time. Even the occasional day or two makes me quite anxious in advance.

I used to feel much more anxious than I do now which I think is either the medication (I’m on Rasagaline) or the vitamins, which have definitely helped a lot (B12, D3 and magnesium).

Hope this helps

Clare


#20

Thank you Clare…

I will try the supplements.

Margs