Just diagnosed help!


#1

hi everyone .I dont know if Im doing this right but here goes. Im 57 , just got my diagnosis , sort of guessed it was parkinsons after seeing my Mum with it. Mine started with my left leg dragging had all sorts of tests , seen the inside of an mri tunnel so many times, then about 3 months ago the tremor started! was referred back to neurologist who sent me for a dat scan, got the result yesterday, so now I begin my PD journey. Am feeling sad, scared and angry I suppose thats normal isnt it? Unsure whether to tell people or not, what did everyone do?


#2

Hi Anne 123

I'm also newly diagnosed on 20 Dec 17. To say it's been an emotional rollercoaster since then is an understatement! On reflection I've had various symptoms on and off for at least 4 years. I went to GP about tremor 18 months ago and in last 8 months have been dragging my leg.

Most people were asking me why I was limping and I'd already told them about my tremor. For me personally I have found it easier to tell people, some are very supportive and others appear to have ignored it! The hardest bit is saying the words 'i've got Parkinson's', so I've emailed or txt some people...

I'm terrified of the whole thing but I'm trying to be very positive and getting support, info and help from wherever I can.

I met with a Parkinson's UK support worker yesterday and she was brilliant as were the Parkinson's nurses at my local hospital.

Hope that helps

Jayne849


#3

Hi Jayne,

Thanks for offering such great advice. As you are newly diagnosed, I just thought I'd chime in again to let you know that we have a lot of help and support available to you on our website, here.

I'm happy that you've had such a positive experience with your Parkinson's UK support worker, feedback like this is always great to hear.

All the best.

Thanks,
Reah


#4

Hi Jayne849
thanks for your reply , I must admit its a relief to hear someone else has leg dragging in the early stages, it seems all the video clips Ive seen have focused more on the tremors than the legs.This has been the worse bit of it all for me as Im usually really active, holidays in greece , climbing steep hills, gym etc right up till the leg started dragging 18 months ago. Couldnt get any answers from the medical proffession( one even hinted that Iit was all in my head) until the tremor in my arm started. its taken a month to get dat scan results guess I had a great xmas waiting.lol.


#5

Hi Reah

Thanks for your message, every bit of positive info I can access can only help. I've been on the phone this morning trying to sort out neuro physio with a private company (recommended via my support worker) as there is a 12 week waiting list for the NHS programme in Leeds. I'm on sick leave at the moment and will probably take another couple of weeks, think I'll need the time just to complete paperwork ie mortgage insurance, pension, DVLA, car insurance and chasing up prescription for meds.

Thanks

Jayne849


#6

Hi Anne123

All the feedback I've had so far has suggested that if you do exercise and take meds it can slow progression. I'm hoping that once I get on medication and start doing the exercise I'll be able to get back to being active. Have you seen a specialist nurse or been given any drugs yet?
My advice would be to find your Parkinson's UK support officer on here or contact the helpline, they are brilliant and although they can't make it go away they will offer much needed advice and support.

I know what you mean about waiting for results and spoiling your Christmas, mine was the other way, I got the results but then had no one to speak to as everywhere was shutdown.


#7

hi Anne we all get scared when diagnosed you need to find and contact your local parkinsons nurse so you know someone is always there for you try to stay posative good luck
Petec


#8

I did tell people it does sort the fake friends and loved ones from the real ones I think if they know most have more empathy and understanding those that have not then get lost. Don't panic most progression is very slow and if your able I recommend learning about your condition.
Best wishes to you BB xx


#9

Jayne,
So pleased you have had a positive experience so far. I am sure your positive attitude will help you. Exercise, yes that does seem to be the key and great support.

We are here for not so positive times as well, so keep posting and sharing. Xx


#10

Hi TeeHee

Thanks for your message… I needed it today as I’ve just had an awful day and a bit of a meltdown…

Been to a couple of exercise classes with a neuro physio and they’ve made a bit of a difference I think, they’re hard work though. Don’t suppose they’d be worth doing if they were easy would they? :wink:

Jayne xx


#11

There is life beyond parkinsons. Tell whoever feels comfortable but the more people you tell the more they will understand that you need their support and friendship. However you do not need to wear a badge, your decision who and when .

Lots of info on internet but stick with this website and forum, noone understands pd like we do!!

Positive attitude essential. There will be good and bad days, just hang on in there.


#12

Hi Jayne,

A mini meltdown eh? Not surprised us humans are a bit fragile at times and we all have them. I think you are doing brilliantly as new to Parky.

Neuro physio sessions ,agree hardwork, but they really hit the spot.

Keep thinking of all the things you can do and will be doing for many years to come.

I echo whats been said, you will find lots of support on here, happy, mad or sad. :blush:


#13

Jayne,

Have read some of your other posts. I too have think about swinging my left arm and have been re learning how to walk ‘properly’. Heel down stand up straight, took me 8 yrs to realise there was a neuro physio helped a lot, keep it going.

Lots of evidence with pd warrior as potentially slowing progression but in any case keeps you mobile.
Stretching excercises good for calves as not stretching out can contribute to shorter steps, shuffling. I do not have this problem and am told its down to leg stretches.

Ask your physio just to make sure you have this for homework too.

Up and at em, xx


#14

I have just been diagnosed too and feel very much as you do


#15

Hi all.
I was diagnosed almost 18 months ago now. I agree with all of the above regarding exercise (any movement) . Its so important to stretch and if you’re doing neuro physio as well, even better. I’ve just started pd warrior type classes and notice a big difference in my walking. I drag my right leg too. Unfortunately you will have down days but don’t be too hard on your self.


#16

Hi TeeHee

I’ll remember the stretching exercises and homework. I haven’t exercised for a few days as I’ve been in bed with cold/flu and today I noticed more pain in my hand and foot so it will be interesting to see how quickly things improve when I get back to exercising tomorrow. Is your neuro physio NHS or private? I’m waiting for an appointment with the NHS one so going private for now, hopefully there won’t be any difference other than the cost!

Onwards and upwards :wink: xx


#17

Hi Divine1

I agree about the neuro physio and PD Warrior, I started a couple of weeks ago and have noticed a difference already. The physio told me that I have to think of exercise as part of my treatment in the same way I do medication which makes sense to me.

How many times a week do you do the exercises?


#18

Neuro physio nhs , was seeing a community physio after asking gp to refer me. Community physio told me about neuro physio but 8 yrs in. Problems I had with walking have almost gone (as long as I concentrate) . Really great physio nhs, same qualifications. Xx


#19

Hi Divine 1,

So pleased you ok and doing well. PD Warrior just waiting for go ahead as really keen to do. In the meantime tai chi classes this coming week and a few others to try.
Will have to get a routine going when worked out whats best or what I can do! :blush:xx


#20

So sorry, hope you are feeling better xx