Coping with diagnosis


#1

Love to hear from anyone as to how they transitioned from being diagnosed to getting on with life!  I am still only 5-6 weeks into mine. Thank you Forum.


#2

Hi Het

Everyone's really different. Some fall apart, and that's quite reasonable.I just thought oh well and went back to work. I was pretty sure it was PD before I saw the neuro, so maybe that helped. I also found that the meds were a great help, not initially with the motor symptoms but with moods especially. So I felt much better after dx than before.

It's not all been joy, of course, and every now and again I get frustrated and depressed at what i can't now do. But yer gotta keep yer pecker up, aintcha?

Hang on in there, and keep posting.

Best

Semele


#3

Het

Semele's experience is much like mine,  I'd asked for a PD consultant referral from my GP, 6 months before official confirmation.  I found that having an answer to why I was feeling so bad helped me concentrate on how to get the best out of each day.  Timing of meds and being able to alter the daily schedule help me a lot.

PD is not in itself life threatening so get on and do those things you always wanted to do, within reason.  I joined a golf club and play twice a week, not always well, but I find exercise that I enjoy is key to keeping my spirits up.

Do insist on being given a full choice of the various medications available.  There are pros and cons with nearly all of them and what you get offered seems to vary depending on the local PD team's experience/NHS directions.  

I think it is essential your family and close friends know about your condition and meds, including the possible side effects.  Their feedback on how you have or haven't changed could save your relationship or life savings.  PD meds can make you think your actions are perfectly reasonable, when in essence they are not to those who care about you.  What are you like without your inhibitions (i.e. tipsy/drunk)?  This can be an indicator of what some of the drugs could bring out into your daily life.

Even without the meds, you may get the feeling that you're going to do something now before you're unable to do it.  That's natural in my opinion as faced with a life changing condition, changes to your lifestyle are required.  Bucket lists are common, just remember we've probably got a lot longer to complete the list than those given a life threatening diagnosis.

I've found that PD is very selfish and my ulcerative colitis has virtually gone away as PD 'wants' full control. I've even stopped getting horrendous hayfever since I was diagnosed at age 44.

I'm 53 now, and can still do everything I could do at 44, although slower (way too slow for my job), but then that's one of the joys of ageing.

On the job issue, I was prepared financially and my employer / consultant have been fantastic.   There's lots to read about on the forum concerning work and benefits.

The sunrise and birds waking is something I now see and hear more often, so I'm off now, I can have a nap later. 

 

 


#4

Hi Kendo and eveveryone

I noticed you say , Kendo, that your ulcerative colitis has almost disappeared since PD arrived. Same has happened to me. I still take a small amount of medication for it but have been told that it has effectively 'burnt itself out.' Hope it has, haven t had an attack for 20 years. Maybe Mr PD arrived then. There s also a possible connection between PD in the brain and the bowel I believe.

very complex methinks! I now have to take something for the dreaded constipation!

bw.  Samdog


#5
Samdog. Yes, I think the immune system failings in the ...itis conditions where the body in essence turns its defences excessively is attacking the brain proteins that keep dopamine producing cells healthy. It's this process that the GDNF trial is looking to save and possibly repair.

#6

Hi all

I was diagnosed within 6 months of my first recognisable symptoms and after the initial shock and struggling to tolerate the meds life is pretty much the same as always.

Been Dx for over three years now still work full time, look after grandchildren etc.

It is interesting what you say about the bowel and PD being linked. I have had irritable bowel syndrome all my adult life but since i started taking PD meds it has gone !!!

Wierd

Caroline


#7

Hi Het

Everyones experience will be different some just say ' oh well ' and others take a bit more time to get used to it and come to terms with pd , although i had it in the back of my mind that i could have pd  it did still come as a initial shock i remember sitting in front of the neuro fighting back tears saying im to young to have Parkinsons , it did take me a while to finally come to terms with things i felt like i was on a emotinal rollercoaster one minute i was fine  telling myself oh well nothing i can do just got to get on with life and the next i would be in floods of tears and feeling so sorry for myself , i just woke up one day and thought ok i have pd , can i change it ? no i cant i just had to get on with my life the best i could it took me about 6 months to finally come to terms with it but i think that was probably due to the fact that i was diagnosed in August 2013 and my mother was diagnosed with pd in September 2013  so a double whammy , give yourself time you will get there


#8

Thank you to everyone above!  I naively felt I was accepting and emotionally ok about it all on 23 April 2014, but have since realised that I am trying to deal with it all.  Giving myself time, well I think I have been rushing it all and getting impatient and feeling lost when I have my "meltdowns". 

An emotional rollercoaster is very accurate Dolly!


#9

Hi,

I was releaved more then anything that it wasnt my imagination and it actually got a name. I think i felt worse when i was told i had type i diabetes 30 years ago. My husband on the other hand was really upset and i think he saw me already gone and burried . But he got over the shock and we get on with it now. I approach it was a good dosis of healthy humor. I told my collegues at work and they all are fine with it and cant resist a joke from time to time.

As every person is different its hard to tell how a person feels or takes the news. I am lucky to have the support of a lot of people who drag me through it no matter what.

 

But...as my dad used to say long time ago when we were sad....best medicine is having a good laugh and when something is really funny you will laugh

 


#10

Dear Everyone

 

Thank you all for your replies!  You have all helped in one way or another.

Last night one of my dreams came true....not cured yet!  BUT ...a good dose of a live concert staged outside at Hampton Court Palace...beautiful setting and the rain never came!

THE BEACH BOYS  were amazing nearly 2 hours and no break!  I booked way back in January before DX anyway, I forgot all about Parkinsons (except a few minutes when my left tremor hand began to ache from so much clapping!) and even managed to jump around, nearly lose my voice and behaved just like I always have done at concerts etc.

Good Good Good Vibrations !!!!

Sincerely

HET