Newly Diagnosed


#1

Hi. I am really new to Parkinson's having been diagnosed in February 2014. I am gradually coming to terms with the situation and have been on the forum every day for the past two weeks-interested in how other folks cope with the condition. I have already met some really lovely people within Parkinson's UK and I am hopeful that I will manage well with their support-it's very scary!


#2

Hi Faith, and welcome.

Indeed it's scary, especially just two weeks in, but you'll find plenty of support, help, and advice here. Whatever you're feeling, someone else is feeling too.

Best wishes

Semele

Love the Llama (sorry, Alpaca)


#3

hi faith. and welcome smile


#4

Hi everyone. Thanks for your quick replies. It's great to know you are there 'fingertip friends'.

I seem to fluctuate between finding great comfort there is a name given for my symptoms and then moments of the day believing the neurologist has it all wrong! I guess this is normal?

At this moment I'm trying to muster energy to go shopping!

Semele-I went Alpaca trekking in the Summer last year...it was fab.


#5

yeh it can have its good & bad days your right there harder in this cold tho,some sunshine today that made it a good day !


#6

Gus. Who is that in your avatar?


#7

thats my old girl ebony shes 13yr old lab ,has trouble with back legs, & goes to bed earlier these days but some days she thinks shes a pup again !


#8

Aww. She's very lovely. A reliable companion and friend. I have a dalmatian who's ten now. She's not much keen on walking far.... although she'd run a marathon for food!big grin


#9

funny how they eat & eat if you give them the chance,nice speaking to you have you got many symptoms of pd and are they controllable i hope.its not all bad !  just make sure you enjoy life to the full.i think we take things for granted but it certainly opens your eyes.


#10

Gus is right.  PD is harder in the cold.  I am on holidays in Florida having come from the frozen Canadian prairie - that is from -27C to +29C and believe me, the heat is better.  My tremor has settled down and I am able to stay awake past 11pm.


#11

its mad how the heat makes you feel so good,but do you find the english sun does not have such good effects for some reason maybe its the colour of the sky always  looks a bit grey i find.do you think the gps should write prescriptions for holidays !smile


#12

Hi faith and welcome.

like you I was diagnosed 3 weeks ago, it is scary, people on here are so positive.

exercise if you can try it helps, I walk in swimming pool , also hobble with stick and husband and have little exercise bike, always been active.

are you on any medication yet ?

first lot upset me badly, see pd nurse soon to discuss , trying to keep off meds at present . Went to local pd agm yesterdsy , got more info , made friends .

best wishes 

brenda


#13

Hello Brenda. I agree it's so supportive on the forum. I use it a lot at present to read similar experiences and to gain more knowledge about Parkinson's. I'd never thought about my symptoms being this...amoung others I thought stiffness in my hand/arm/shoulder was going to be something like RSI. In fact I found the neurologist's tests quite funny till he told me his diagnosis! Although confirmed by scans I am still struggling to accept it-especially as this week symptoms have been a bit better.( but then I have been on holiday from work)

Yes, I enjoy exercise especially swimming and jogging and now need to find some 'me' time to do it. Actually I thought I might get in training for a marathon to fund raise.big grin

I am finding dizziness a challenge...It can't be due to medication because I decided to try and manage without for a little longer. I don't know if that's wise but, like I say, I'm still getting my head round it.

I wish there had been a PD nurse available when the neurologist gave me the results. It was a very strange experience! The nurse at the PD group was brilliant...she gave me lots of time and explained things clearly and the info/support worker was fab too.

Best wishes for a good night rest.

 


#14

A belated welcome to the forum, Faith, this one from a town near Portland, Oregon --

I, too, was diagnosed in February -- but in 2002.  My diagnosis came approximately five years after the first symptoms I can recall.  Of course, at the time I did not recognise them as PD symptoms.  Like you, I got along quite awhile without medication.  Then as symptoms became noticeable and annoying, I started down the road of more and more meds over the years.  The great thing about my case is that the meds plus exercise seem to have arrested the disease in its first stage.  I know there are harder times ahead, but the longer I can delay them, the better.  I am very glad I agreed to take Azilect (Rasagiline) when it came on the market, because I think it has been responsible (in part, at least) for slowing PD's progress.

It sounds to me as if you are doing very well at accepting this diagnosis.  All of your reactions are perfectly normal.  It is difficult to believe we have PD when we still feel like our old, familiar selves.  Yet gradually we have enough experiences with symptoms to know it is true.  Some people suffer severe depression around the time of diagnosis, another normal response.  An optimist at heart, I escaped that, though I spent the first week in a serious and fearful mood.  Immediately after diagnosis, I thought too much about the future; now I worry much less and just try to make good use of the present.

My best wishes to you!


#15

Hi Faith yes it does blow your mind away initially. But as a person, and each person copes with it differently, you have to stay focused on making the best of things.  Easier said than done at times but I do think about what I have got not what I havent. But coming onto the forum was one of the better things I have done since diagnosed.  I am not alone but surrounded by people who are all on the journey I am on and probably have the same fears and apprehensions. We are all here for one another.


#16

Hi Faith....a big welcome to you, i am pleased you are finding the support you need from this forum, like Astoriasis  says it is one of the best thing i have done also. Everyone has their own story to tell and you will hear many, but the great thing is that we all understand and are there for each other. It helps so much i find to chat with folk who understand what it feels like to have PD. I must say though i have had it for approx 5 years i was only diagnosed a year ago and it was partly a relief after feeling poorly for so long, to find out what it was. I can cope now with great family and pals, good balance of meds and keep exercising........i could not contemplate a marathon but i love to dance....Ballroom, Latin, sequence and Line (especially Line) and it lifts the spirits with the music also. Keep moving, keep as positive as poss, and most of all keep smilinglol

Best of wishes to you

Dolly


#17

Hi Dollymaz. Thanks for your uplifting message. It's good to hear you like dancing...me too. Have you been to see 'Cuban Fury' at the cinema? It's lighthearted and funny...a good tonic I found. I used to ballroom dance as a child and still love to throw a few shapes on the dance floor!

After your initial diagnosis do you remember receiving any paper work to confirm? I've been waiting a letter from the neurologist but haven't received anything yet. I thought I might need it for the DVLA.

Lovely cat Dollymaz...are you an animal lover?

Best wishes

 


#18

Hi Faith......I haven't seen Cuban fury but i know i would enjoy It, anything that relates to dancing. I had the opportunity to learn Ballroom as a child as my grandad was a dance teacher and won many medals,,,my Nan sometimes partnered him and at 92 could still be seen bopping around her bungalow if a fast piece of music came on especially a cha cha! i regret not taking him up on his offer because he tried so hard to encourage me. It wasn't until i was in my 50s that our local council were giving 6 free lessons and my Husband and i took it up and never looked back...we were hooked. Won't ever make "Strictly" !!!! but it is such a wonderful hobby and also good for the co-ordination and balance and with PD that can only be good ay?

No i have never been given any paperwork, maybe i should mention it when i next go to the hospital in April.

Yes i adore all animals especially cats....i feed all the local moggies  and i am sure the word has got around now and they probably call me Pusssy galores cafe!! The pic is of my lovely Jess, she was so beautiful and sadly died in 2012, she was 18 and at the end went blind and was fitting. She moved in when her owners (neighbours of mine) had a child that would not leave her alone so she packed her little suitcase and she was with us for 13 years. I still have Thomas he is like an old rag rug, the most easy going, relaxed loving animal and is coming up 18 (we believe) he moved in when his owners moved abroad and has been with us for 8 years. He lays in my arms like a baby and is so gentle...he reminds me of an aging hippy, he looks stoned most of the time!evil 

Keep smiling Faith and very best wishes


#19

Faith, I certainly remember it taking a while for any written confirmation of my diagnosis, then got a copy of a letter from my neurologist to my doctor. No you don't need it for DVLA, they send you some forms to fill in and they then contact your neurologist and doctor.

Cheers


#20

hi faith, i would phone up your car insurance &  let them know !