How do I stop this nightmare

hello we have now spoken and thank you all for supporting the nicest person in the world 

we will get through this

hubby dave

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

 

 

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

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?

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

 

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

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!

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

 

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

 

 

 

 

 

 

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

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

Trying one last time....

GG

xx

I have been trying to cut and paste some advice about not being liable for a debt if you have evidence you were vulnerable and the effects of the DAs made you vulnerable. However if I try to post it I can't and Ezinda and forum team seem unable to help.

You don't accept private messages.

Perhaps you can Google it?

Will keep trying. Stay strong.

Love

GG

Dearest Juju
I am so pleased you have seen the neuro and are back in the NHS with access to a Parkinson's nurse.

This is from a poster on another site that I use....it is worth speaking to your neuro and asking him to write a report saying you are vulnerable and the gambling was a psychological side effect of your medication and you had no control over it.

OCD is a mental illness....then go to the CAB.

Don't give up fighting...none of this is your fault..as someone said to me, " A person on DAs is a drug-crazed lunatic".

Good luck! Keep in touch.

"Something people with mental illness/impairment aren't told when they get into debt, is that they can have their debt written off! This is providing they can gain medical proof from a medical professional that they are "vulnerable" or at least they were at the time of taking the credit out. This is because creditors have a duty of care to not sell to anyone that is not able to make responsible decisions regarding their finances - this includes people with illnesses such as bipolar, schizophrenia, autism etc!

I don't know the full ins and outs, but charities like step change and the CAB should be able to point you in the right direction. hope this can help someone have a debt free Christmas.

EDIT: if you can't have the debt written off, a lot of creditors will pause payment or reduce them for you."

Thank you Ezinda for solving why I couldn't post this!

iI turns out that the cut and paste part had 2 emojis and you can't post emojis in a pasted post so everyone needs to know thisand remove them before posting!

Juju...a bit late but I hope it offers something useful to investigate.

GG

xxxx

No problem GG. Note that you can use the emojis in the editor here, though.big grin

H Juju

Just checking...did you see my post and have you contacted anyone to discuss it?

Hoping it might offer some comfort/alleviation if money problems.

Love

GG

 

hi gg,  i am so grateful.  i didn't get the cut out but i will try to google it.  i will let you know how i get on.

love  juju

Good luck Juju....The post with the details is here on 4 December....Ezinda managed to,post it for me.

Keep going!

Love

Gg

Hi Juju

The drugs do make you impulsive.Im only on a little sinemet and know .

What I did is cut way back on sinemet  down to 3 pills a day not more than 350 mg a day now .Im alot less impulsive and a good long walk finishs it off.Try chaneling your energy into something constructive to burn it off.I also have gotten into more civic duty.laying around just makes it easier to give in to temptation.Dr.Low said you have to move your muscles to help retrain your brain.I also locked my computer away from trouble you may have to stay away from any easy access.gambling here is also spreading fast a bad omen.Everything bad for us is made so easy everything good for us is hard to find.Dont lose hope just let them know and also there is a lawsuit against the drug companys im not sure if its still around but check on it.

good luck

hi,

I am staying away from temptation and have reduced pramipexol, i should be off it completely in 4 weeks.

I have an addition to my prescription it begins with E cant remember full name, its supposed to make the levodopa last longer.  I have lots of really low dips during the day. The specialist says that 1 in 12 people get severe diarrhoea, hope im not one of them!!  

If it doesn't work then he wants to try the amorphine pump - not sure about that.

There has been lawsuit won but in America.  As it says on the advice slip in the packets that it does affect some people i don't think anyone has been successful in this country.