Just saying Hi!


#1

I have very recently been diagnosed with PD

Having recovered from the initial shock and now having experienced the initial lift from my meds (even if its psychological !) i am determined to stay positive and continue with my happy and fulfilling life

It's  good to have a place to share experiences and as you read this I hope that you are also doing ok and coping well. 

 

 

 


#2

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Welcome.

You are not alone.  I think that most people seem to have the same reaction as you - shock.  And the best thing to do is exactly what you are doing STAY POSITIVE.  I think that the main reasons for this is that most people dont want to hear about the dreaded Mr P for a variety of reasons and because I am a great believer in your mind and body work hand in glove.  Think hard enough negative thoughts and they will happen and you may not be able to undo any harm you have done to others.  Does that sound and sit ok with you.

Be pleased to hear of your experiences  -  good and bad

 

 

 

 

 

 

 

 


#3

Welcome to the forum, Davveyworcs --

Astoriasis is absolutely right!  Think positive thoughts and try to keep your spirits up.  Optimism results in the production of helpful brain secretions, they say.  Another factor we can take responsibility for is exercise.  It is crucial to fighting PD successfully.  Before my diagnosis I wasn't exactly a couch potato, but my exercise was neither very rigorous nor regular.  I have changed that picture, I assure you.

You and your doctor and PD nurse will probably work together to determine a course of treatment.  Personally, I am glad I started medications early.  Over the years I have increased dosages and added new meds.  The good news is that after 18 years with PD, I am still in the first stage and living the same life I always did. 

Wishing you the best of luck,

J


#4

Hi Davveyworcs

Welcome.  OH is badly affected by PD so I`m his full time carer.  I find the forum is very helpful and the social section is very good at cheering up. 

Like J of Grey Cottage we added exercise and found it very helpful.  Rather late we discovered that the PD nurse can put you in touch with a therapist if you have problems with swallowing or problems with talking eg getting quieter or not able to finish a sentence.  Her exercises made a huge difference.  Hope you won`t have the problem but good to know help is there for the asking.

  Best wishes

Hatknitter


#5

Just wondering about the variation of services from area to area.  Shortly after diagnosis I was invited to attend a session where I met up with other people with PD, local area rep, local pd club member, physiotherapist, occupational therapist, and pd nurse. . They all give a little talk on their role, how to access their service and waiting if any list.

We were then invited to a six week course given by the physiotherapist, who were excellent.

I still meet up with a couple of ladies from the course for lunch.  We are very different in personalities and so is the pd.  We have found that this support really helps one another.

Be interested to hear if you have anything similar

We are not entirely alone, even though Spock has gone to the Happy Vulcan Ground - Ha ha

Best wishes

Astoriasis

 


#6

Hi Astoriasis . I think the support you had post diagnosis was fantastic . Unfortunately I didn't have that . I was referred to a pd nurse who I saw in sep when I was diagnosed and my next appt is April . I thought I may have had a follow up phone call from her post diagnosis if not an appt in person but no  . I asked for physio referral and my physio was very helpful and I have had hydrotherapy . I am paying to use pool now but it's not expensive . 

My pd nurse actually gave me my results as they had been sent to wrong gp ! I didn't feel she explained it very well and when I asked if she'd got any literature on it she said no ring puk . I was surprised . I expected more. I think because I have nursing background and its not how I did things . I worked in palliative care for ten years and we had a lot of training into the breaking of bad news . 

This forum has been my best support .


#7
Hiya In the 9 years since I have been diagnosed, I haven't seen anyone at all, except my consultant, I haven't had very much support either, my ex was useless and only ever thought about himself, he didn't like the fact my meds gave me back my independence. I have yet to go to a support group, I've just sort of 'got on with it ' by myself.

#8

Hi Blondie35,

I am like you I only see the specialist for 5 minutes every 6  months. I have never seen a Parkinson's nurse, maybe they don't have any in Liverpool, I don't know.  It seems like the support available is dependant on where you live.  I hope you get support from your family and friends. 


#9

Juju,

I'm lucky if I get to see my consultant under a year, he is always so fully booked, my last app was in November and that was for about half hour but I had a lot to discuss, my next app was meant to be 6 months after that but when app came through the door it was made for end of July, far too long, so i had to ring up and managed to bring it forward to the end of May, so frustrating. A Parkinson's nurse has never been offered to me, but I shall definitely be asking when I next see him.

I have a very big family, I am 1 of 8, they used to take it in turns to come to my appointments with me when I had to travel all the way to London, such a long and tiring day, esp as I live just outside Bristol which is 3 hours away from London! Thank God i no longer need to go there , I see my consultant in my own town now! 

Have you enquired about whether or not there are any pd nurses around your area? 

X


#10

Hi

I haven't enquired yet because I suppose, if I am honest, I prefer not to see anyone unless I am in dire need. I just live each day as it comes.  I think I am probably in denial, but after almost a lifetime of suffering from anxiety I am enjoying the fact that my pd meds have helped with the debilitating symptoms of the anxiety.

JUJU

 


#11

I know exactly what you mean juju, x


#12

Ladies,

You both should be seeing your consultant or PD nurse at least once every six months if you do not have a PD nurse covering your area then there are PD nurses available via the helpdesk number with PUK they will return your call within 48hrs so if you have any issues at all with you PD please call them. You are both so young to have this condition you really do need close monitoring. As for your consultants I feel you need to get a bit insistent with them some Dr's will just let time go by if you don't call them they will just assume everything is fine. I see my specialist at Lincoln every six months and my GP once every month this is because she care's and want's to make sure everything is ok with me. I do appreciate I am lucky in my choice of GP but if she can manage this level of service then other Dr's can as well.

I do have a back up GP I see as when she is not available my monitoring is still consistent, my two are so good if I am not able to get to the surgery Dr G will phone me. I call this 100% first class service. So just start getting a bit more insistent with yours, we ALL deserve the same level of care. 

Good Luck Ladies BB x


#13

Thank you BB,

We do all deserve the same level of care,you are right. I find it hard to trust the doctors, due to a very distressing experience many years ago.  I suppose I let them wait for me to be so desperate that I have to go to them.  Next time I see my specialist I will try to be more open about how I feel and what is happening to me.

x

 


#14

Good you need to think of yourself in this battle you are number 1 and don't forget that we have enough problems with this PD don't let others cause you more stress is the worse thing for us take care and let me know how you get on xx


#15

Hi JuJu, Blondie, Madison, et al

:You really cheer me up.  As you say take one day at a time and my back burner is only simmering up to now.  I have a bucket list for this year which I havent had in the past and like it.  It gives me something to focus on.  So, writing the book is there, to do as much drawing as I can, so look out for a New Astoriasis bird.  However be patient, I seem to have trouble with the down loading.  The new one is an eagle in flight and it makes me think of a song a few years ago.  'The wind beneath my wings', or something like that.  

Do we have any watchers of George Gently out there? Martin Shaw looks as if he has been diagnosed with MS.  Not the same disease as Parky but with some similarities.  It will be interesting to see how it develops.

So keep doing your thing

Love hearing from you

Cheers 


#16

Hi,

My current thing is walking (I have my own style). Colouring within the lines and a volunteer committee member for a youth club.  I have tried knitting but when I gave my niece the finished article she asked 'what's that?'!!! I had to agree with her.

I am also having a go at mindful meditation. 

Hope Martin Shaw has slow progression, wasn't he in the Professionals', with his 80's perm we could have been twins!

Friday night is wine night, chin,chin x

 


#17

Good morning - I too am recently diagnosed.  My mobility is still pretty good and my worst symptoms are internal tremors, so nobody tends to realise I have PD.  I therefore wear one of the blue wrist bands from the Parkinson's Society just in case I need help at any time.  I have found that, despite feeling pretty grim, actually knowing for a fact what is wrong with me is half the battle and helps put me on top of things - most of the time!  I hope you are getting on OK.

 


#18

Yes, love George Gently and all things Martin Shaw.  I did wonder that, as the first episode in this series was aired in Parkinson's Awareness Week, he was going to have PD.  I believe though that MS does have similarities.


#19

I have nursed people with Parkinsons and Ms and in someways they are not similar.  People usually complain of dragging a leg, feeling tired and depressed and it occurs when they are young.  Then the symptoms disappear they then get back to a normal life only to be inflicted in later years.  I suppose you could call it a remission.  That does not seem to be the case with George.  They usually have a normal life expectancy and die from something else eg pneumonia.  The other thing that has been noted is that they are very introverted and selfish but hey, who can blame them.  Does that help.

Lovely reading the posts

Havent been on for a whilered face


#20

Hi, everyone --

I haven't been on for a while either.  A few days ago I returned from a 24-day trip: first a river cruise through Belgium and the Netherlands, then a tour of gardens in Oxfordshire.  It was a grand journey, and I was so pleased that my health held up and that all the walking did not tire me.  While PD remains stuck in the first stage, I am going to do as much travelling as I can.

Sometimes I look at the number of pills in my hand in the morning and feel shocked.  But as long as they are suppressing my symptoms, I keep swallowing them!

J