Being Diagnosed


#1

HI All

Well it is exactly two weeks ago since I was diagnosed.  I hoped against the odds that it wasn't going to be PD.

As a lady of 43 married with a 3 year old daughter it came as a mighty blow.  I have been suffering with excessive cramps in my left leg for a year and a half, and a loss of use of my left arm, which being an administrator was not good for my typing skills for at least a year. 

Silly me, at first I thought the loss of use in my arm was just stiffness of the joints or something and ignored it.  However, as time went on I thought this was not right and in February I finally went to see the Dr.  Finally an appointment arrived to see the Neurologist in July, however two weeks prior to the appointment I found out it was cancelled and moved to mid-August.  I approached the doctor who then told me his suspicions of what was causing the problems, it was the biggest shock in the world and I couldn't control my tears (even now remembering that day it brings tears to my eyes).

I went for the scans and on receipt of a letter I was copied in on I finally realised that I was really facing the possibility of PD.

The day of finally receiving that diagnosis I thought to myself I will be strong and I won't shed tears, but as you can appreciate I didn't pull it off.

Since that day I have been taking the medication prescribed, and I have to say that typing has become slightly easier, my walking has also improved.

I think that when you first get that diagnosis you think it is the end of the world, but it isn't, it moves slowly and with drug control it makes life slightly easier.

My one true fear was not for myself but for my daughter.  A fear that I had passed this onto her.  I know that deep down there is not a bloody thing I can do about this but just pray it has passed her by.

Being an older mother I had made a promise of taking her to Disney World when she is 7/8 years old and I plan to do that trip come hell or high water.  I have promised myself I will do as much as I can do and enjoy life to the full (even if there are things I cannot do).

A friend of mine who is only 35 years old is facing a kidney transplant, her little boy is two days older than my daughter.  Thinking of her and her family made me realise I can cope with this and there are a lot more people worse off in this world.

Sorry folks for rambling on, but sometimes it is easier to say things on a page then in real life (and also I wanted to test my typing lol).

Wallaby x


#2

Hi Wallaby,

Welcome to the forum. I'm sure there will be members who will come & say hello to you; they're a supportive and friendly bunch.

You are more than welcome to come and test your typing here whenever you feel the need to share something or ask a question to the others.

We have a helpline, which you can call for free on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm). This is where you'll be able to talk to our nurses or advisers. 

You'll also be able to find lots of information on our website; here for example: http://www.parkinsons.org.uk/publications.

I hope this helps.

Best wishes,

Ilona

Moderation Team.

 

 


#3

Hello Wallaby,

I can imagine how you must of felt having been told your diagnosis. mIne hasn't been confirmed yet but just waiting for result in writing. it sounds like you are looking positively at things and having aims such as taking your daughter to Disney is important to keep you focused. I have found talking on here so helpful and hope you do too. I wish you all the best! 

Sue


#4

Thank you LEXI255

I think talking on here will help a lot x

 


#5

hi there,

Wallaby,

just a quick note to hopefully put your mind at rest, about your concerns about your daughter, unless you have a family history of PD (with lots of relatives having it) then you haven't inherited it and so can't pass it on.

Only 5% of people with PD inherited it.

95% got it all by themselves (not meant to be funny - but it is late and I can't pull better words out of my head!)

I have just come back from the lecture in London organised by PUK on 'Genetics and PD' and they quoted those figures -  I had read them before, but reassuring to hear  them again from a reseacher just a few hours ago!

My mother had PD - but no other relatives that I know of....so from what is known now - Mum got it due to whatever triggered it in her, but she didn't inherit it and it isn't something she can pass on to me. (But I suppose won't stop me developing it all by myself , but nothing to do with Mum.....)

Phone the Helpline and they can explain it all in more detail!

Thinking of you, glad you have found this forum and the PUK website

Keld

 


#6

Thank you to everyone who has messaged me and given words of encouragement. Today I saw my neuro consultant who gave me my DaTscan results and confirmed that I have early stages of PD. Thankfully my best friend came with me as I felt a bit in a maze so she was able to take in any information. she has advised me to get my shoulder replacement op out of the way first then tackle a low dose of meds rather than deal with it all in ne go. Hasn't been an easy day but I suppose I now need to get my act together and move on! How easy that is I don't know. Sue


#7

lexi255

i am going to private message you.

BB X


#8

Dear Keld

Thanking you for the figures, it was sort of explained to me by the neurologist, but so many things were going through my head at the time it wasn't easy to take it all in.

I have no family history of PD, so "I got it all by myself".

If my daughter has it then I know I am not the cause, hopefully she doesn't but we never know what the future holds.

 

Wallaby


#9

Wallaby,

you are welcome!

Take care,

Keld


#10

Hi Wallaby,

Read your post, I too was only diagnosed a week ago and feel for your concerns, I am 53 married with 3 sons, two of which are going through university, I think the hardest this was telling them and seeing thier reactions, I am a former soldier now working in the Middle East (however will now be returning to UK after the PD diagnosis).

I too ignored and hid the signs for too long. My Wife and the boys have been great and I think we both are lucky to have family around us that will help us through this, I see it as just another hurdle in life (albeit the biggest one I have come to so far).

Keep strong and think positive!!

All the Best

Doc.


#11

Thanks Doc, your kind words mean so very much.  And I would say the same to you.  I think when your suffering you think it is your imagination and just get on with things, however when you are being tested fear suddenly kicks in.

Have a good weekend

 

Wallaby


#12

Hello Doc

I quite understand how you must be feeling as not long diagnosed either. It's a new challenge isn't it and not an easy one but like you say keeping positive and trying to stay strong plays a big part. Have you started on meds yet? My hubby is very supportive and puts up with my moody and frustrating moments. It's early days but with my families support hopefully we'll get through! I wish you all the best.