Newly diagnosed


#1

Hi everyone,

I was diagnosed with Parkinson's on 29 January. After convincing myself that the slight and intermittent tremor in my right hand was nothing more than a trapped nerve, this came as a complete and very nasty shock to me.

Now however, I feel as though I'm gradually coming to terms with my diagnosis and manage to be positive about it and my life ahead for most of the time. I've played club cricket for 39 seasons and also go out cycling regularly on my road bike. My consultant has said that this will stand me in good stead so here's hoping he's correct.

I'm also looking forward to drawing some inspiration from many other stories like mine on this forum

Cheers...

 


#2

Hello AndyMac, all that sounds like a very good way forward; positivity and exercise - you'll put the rest of us to shame.

Best wishes

Semele


#3

Hi Andymac

  Welcome to the club, I was dx last June after a cognitive meltdown at work.

It does take a bit of time to come to terms with being dx so try not to rush the process as you may find yourself coming down with a bump.

a good attitude and keeping fit n busy helps a lot plus support from friends n family is important, you will find plenty of support and inspiration on here and loads of info to help you when you need help,

well I hope things go well for you and welcome once again.

  Live well.   Cc


#4

Another welcome, AndyMac!

I love to tell my story to forum newcomers, because it's a very hopeful one.

At present, I'm 68 and living in Oregon (where it rains as much as in the UK, I believe).  I was diagnosed 13 years ago but have had symptoms as far back as 18 years ago.  With vigorous and consistent exercise plus a gradually increasing regimen of medications, I am still in the first stage of the disease, and my doctor says he sees no signs of advancement!  I am still living my "normal" life and, since my husband's death over two years ago, managing my own household.  I do have symptoms that I am aware of every day, but they are subtle and unnoticed by people in general. 

I am glad that I started on medications early, especially those that studies indicate have the effect of delaying the disease.  I cannot be sure which parts of my treatment have been the most successful, but I am positive that exercise is one of them because it always energises me and makes me feel better, stronger.  Your active life will be an asset without any doubt.

I wish you well on this journey that we are reluctantly taking.  This forum has been for me and most likely will be for you a great source of information and encouragement.  There are some wonderful people participating here!  Best regards,    J


#5

Hi everyone,

 

I too am newly diagnosed and have known something wasn't right for the best part of 2 years. I have general weakness in my right hand, tremors in the fingers of right hand and dizziness. I too would like to take a positive attitude to my diagnosis, like AndyMac, but I'm unsure what exercises or diet would be beneficial to me. Any help on that would be appreciated. Also I have to contact DVLA and inform them I have PD. Can anyone tell me if they will stop me driving,

Kind Regards

SX Girl

 


#6

Hi again,

A bit of trawling around on the web site and I have found all the answers to my above questions.

I realise now on reading it back I was a bit vague anyway.

Heres to the future!

Regards

SX Girl


#7

Hi SX girl welcome to the forum . As you've found out you can find a lot of answers to your questions by trawling . I have done the same as I am quite recently diagnosed too . There are lots of people on here to talk to who have lots of good advice and knowledge . My problems are right sided too and I'm right handed . Have you got good support around you - family / friends ? Have you started on any medication ? 


#8

Hello and welcome, SX Girl!

This forum is fairly extensive, with some threads that overlap in content and some of us who post on any thread we happen upon, regardless of topic.  I'm glad you were able to find what you wanted.  There is a lot of information on exercise, but I'll add my bit anyway.  I have found that hiking, using an elliptical trainer, doing stretching exercises, and studying Tai Chi (for balance) work well for me.  I've had PD 18 years now and remain stable in the first stage.  Medications helping to delay the disease's progress are worth starting early, too.  Your doctor or PD nurse will undoubtedly assist you there.

Best wishes,

J


#9

Welcome to the parkie club. Great that you are so positive. It's the only way. 

 

Exercise definitely helps but include exercises geared specifically to parkinsons


#10

Hi Maddison,

 

Sorry its taken so long to reply, time taken up at the mo with hospital appointments, I bet your the same. I started my medication 2 weeks ago and getting on fine, although have been very tired and had headaches. I got more information from a registrar doing my lumbar puncture than any consultant. Things like not being able to get into bed easily and my right arm not being flexible. I thought I was just getting old! It was almost a relief to be diagnosed because I had a reason for all these little things that add up to making life difficult. The Registrar also told me that the medication would take a while to kick in, I think I was expecting it after a week! Also getting  a lot of indigestion, is this Normal?

I have a good husband who has been so supportive, we work together so and spend a lot of time in each others company. Also I have a work colleague who has advised on diet and vitamins to take (she enjoys it).

So keeping positive and taking each day on its own merits - that's all we can do!

 

Thanks for replying

SX Girl


#11

 

Yes indgestion,i think it somewhat normal, although we can all see how PD effects us on the outside, it apparently does effect on the inside too.


#12

Thanks for that - its nice to know I am "normal"


#13

Hello, SX Girl --

I, too, have had stomach problems caused by PD.  For me, it's not only occasional indigestion, but apparently permanent gastroparesis.  My stomach processes food very slowly.  Oddly, it was one of my first symptoms, but no one suspected it was Parkinson-related.  Fortunately, medication can correct it.

Best of luck!     J


#14

Hi Andy and everyone  I am newby too dx last week. My tremor is also in my right hand. I have had tremors in both hands since my teens but very mild and then I started with severe back pain sept 2013 and then a month later started with severe tremor in my right hand. Eventually saw a neurologist and he dx essential tremor and put me on gabapentin which turned me into a zombie I couldn't communicae  properly and became very forgetful, when I went back for a review he said I appeared to have PD and he sent me for a Dat-scan which confirmed I had PD I am now on Azilect 1mg daily and awaiting to go on a DA.  I am 59 next week and I gave up work as a teaching assistant last summer because it was all getting too much for me. I am trying to remain very positive about it. I need to exercise more but most of my friends are at work during the day and I feel awkward walking on my own. I have not had time to read through everything on this site yet  so I am sure I will find alot of answers and support on here. My main concern at the moment is driving I have notified the dvla and await their decision but my tremor at the moment doesn't effect my driving. I havent a Parkinsons nurse but I am looking forward to attending the local support group in my area and get some information about local support. question marksmile


#15

 

hi Anne

In my area there are events called 'health walks', countryside (usually) based walks for people of different ability and in length, i think they usually base them so there's a bite too eat at some point along the way start or finish, http://www.walkingforhealth.org.uk/ Hope thats the right link?. if not you might find info from your local gp if thats of interest too you?.


#16

Hi Annew,

I was dx almost 2 years ago now age 47 the strange thing was i knew it was PD all along. You are right about exercising it can only help. Shame you have not got a PD nurse but you can always ring this Website's helpline a PD nurse will return your call within 48hrs.. 

Also the support group's are very worthwhile attending I am a member of Lincoln and District and don't know how i would have coped without them i think they see me as their daughter as i am the youngest member.

If you need any help feel free to private message me I will do what I can and that is a promise.

BB 


#17

Hi sea angler thanks for this link sounds like this could be just the exercise for me. i shall look into it and hope they have them in my area. big grin


#18

Thank you bettyblue for your support I shall get in touch with my local support group and find out what's available locally. Anne xxxsmile


#19

Hi Annew,

Your very welcome as I said if you need anything  message me and I'd do my best.

 

BB x


#20

Hi SX Girl...

I had to inform the DVLA too, they gave me a 3 year restricted license.