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How do I stop this nightmare

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daffy

Juju and Dave,

So relieved to hear that you know and can now both work through this together.  I cannot emphasise enough though that medial advice and support should also be sought. Thinking of you both

D

shefinn

 

 

A trouble shared is a trouble halved - I hope you can get through this together - we are routing for you both!

All the very best - Sheila

Bess

Hi Juju and hi Dave,

Oh how fabulous it is to hear that things are out in the open and, Juju, you have support from Dave. How are your meds’ going? Have you been in contact with your medical back up to help you? I hope so. I went to see my nurse last week and am waiting to hear from my consultant as to how I go about reducing the Pram dosage. Nerve racking times ahead I suppose. May I ask you how you felt when your dosage was reduced? Does it really affect you so badly? I hope you don’t my asking and quite understand if you’d rather not talk about it. What was your dosage of Pram before being reduced. I’m on 1.57 so quite low considering I’ve had PD for seven years.

we’ll keep soldiering on ok?

JUJU

hi, i feel better having been honest but i know i have a long way to go.  I tried to reduce the pram once before but got to 1.57 and felt low most of the day - had no energy, felt like i was wearing a straight jacket.  I go to see the neurologist privately on Friday.   I am hoping that he will  see me on the nhs in future.  We have put the house up for sale and I feel like the pavement has been whipped away.  Its got to be done tho  :(

I am grateful for the time i get during the day when i do have a bit of juice so i can feel a bit normal.  I have had it at least 11 years so i am more fortunate than most.  Hoping that i can enjoy my daughter's wedding next year.  I volunteer and as long as i can be of use i'm good.

lets keep breathing in and breathing out xx

 

daffy

Hi Juju

Good luck with neurologist today.

Your daughters wedding will be something great to look forward to in the new year.

What sort of volunteering do you do?

D

JUJU

Hi daffy.  Just come back from neurologist - i felt so ashamed telling him about the gambling  - he was very understanding - said that i hadn't asked for Parkinson's and that i shouldn't feel bad for needing help.  He said he had sat across the desk from people with pd who had lost as much as £300,000 in 3 months.  He suggested something beginning with 'e' to add to meds but i will have to wait for his letter.

He is going to see me on the NHS and I will have access to a nurse practitioner also.

I volunteer for childline.

Yes I am really looking forward to the wedding and I will be there even if i have to crawl!!

Had a number of viewings - hate it and am exhausted from making it clean like a shiny new penny.  One of the viewers remarked on how clean it was and i felt like doing a victory dance.  Cleanliness might be next to godliness but when you have PD its ssssssssssssooooooooooooooo hard!

daffy

Juju

What a horrible time you and your husband have been through. Here's hoping 2018 will be the start of a much better time for you all. Had you been on the medication that caused the problem long?

I'm a relative newcomer to PD. Only diagnosed last year but I had suspected it for some time. So I think I probably had it for 2 or 3 years before then. PD is definitely unpleasant to live with.

Volunteering for childline is a wonderful thing to do. Must be heartbreaking at times.

You'll have a great time at your daughters wedding. My daughter married 4 years ago and now has 2 lovely children. 3 year old son and 7 month old daughter. My son, who married some years earlier, has 3 children and 2 step children. Ages from 16 - 4 years. We're grandparents to all. It's great to wind them up and then hand them back at the end of the day! Pay back time!

Daffy

 

JUJU

I have been on the medication for about 2 years and the gambling got worse as the dosage went up. Its hard to give it up because the madopar is less effective.  I was diagnosed about 8 years ago but had symptoms 3 - 5 years previously.

I have been very lucky really as its progress has been slow, but it took the job i loved away, and my independence.  I have learnt to appreciate friends and family and make sure i let them know how much they are loved.  Can't wait to have grandchildren.  

Juju xx

 

 

 

 

 

 

daffy

Fortunately my progress seems fairly slow too. Although my own GP did start me on low dose sinemet immediately (prior to neurologist appointment.) saying there was no point waiting. Within 2weeks I felt much more like my old self. The neurologist said I could increase the dose at any time. But all I have read since makes me very determined to hold off as long as possible even though I am aware of deterioration. It's all quite scary if I stop to think about it.

I am gradually learning to accept more help from friends and family. And hopefully show appreciation!

When is the wedding to be?

D

goldengirl

Been trying to post info for you for over a week but can't ...get 'sorry...' page.

Trying one last time....

GG

xx

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