Please help, don't know what to do:(


#1

Hello, 
I am Russian so sorry for my writing.
My mum had Parkinson over 20 years, her age now 73.
Her condition come very bad on last months and I don't know what to do.
It's so difficult see person who you love so much on this condition and I don't know how help to her.
We try call her neurology but her doctor so busy and can't see as, I left lots of message and don't have any respond from them.
At this moment my mum take
5 time tablets of madapar each tablets 100 mg every 3 hours. So her dose now 500 mg.  Azilect in the morning and mertazapune 2tabl before sleep and  half tablets of clonazepam.
But she still feel very bad, please help.


#2

 

           Hello Safi

                         After 20yrs progression of PD , it really is a case of optimising your mums drug uptake,you  must pursue your Nurse Specialists or visit the hospital treating your mum and ask for guidance, I wish I could offer more encouragement but with  PD its impossible to predict from one day to the next I am assuming you are in your homeland and as I have no knowledge of the health service or its priorities in russia its with regret I cannot offer more.  Please keep in touch and inform me of your progress.

                                                      Kind Regards   FED


#3

Hello, thank you for replay. 

Unfortunately I live in essex, colchester and as hospital had only two doctors who so busy and can't see as. I left few messages but don't have any replay. I try contact Romford but them don't call me back too. 

Colchester hospital don't have Parkinson nurse because both living. Hopefully we will have soon something. 

if you can help me,please help. 

Thank you


#4

Hello Safi

      Wel I was way out with my assumption in  your present address ,sorry, I really wish I could  help you more but unfortunately access to 1st class PD  treatment is a bit of a post code lottery,especially under this goverment,,I can only wish you well in your struggle to help your mum.

                                                                                     FED


#5

Hello Safi, I'm so sorry to hear about your mum. She is very lucky to have you to care for her. I suggest you ring the Parkinson's UK helpline 0808 800 0303. They will have some idea of the services available on Colchester, and what you can best do to help your mum.

Good luck, and do write again to tell us how you and your mum are doing.

Best wishes

Semele


#6

Thank you so much. 

We try today take modapar 4 times: 8 o'clock -100mg plus azilect, 12o'clock 150mg, 16 - 150mg plus 0,5 clonazepam, 20 - 1 madapar cr, plus mertazapine and 0,5 clonazepam. 

She very shake now and don't feel very well again. does this Parkinson help line work tomorrow?

Why doctor don't call me back, why UK Parkinson work like this:(

i don't know what to do. I very scared lost my mum. 

I have two British children and I don't work because all my time I look after mum and I can't help her:(

russian system had very good doctors but don't have easy prescribed tablets.

i will try monday complain line and try go to hospital without any appointment. 

Thank you but I still don't know what to do


#7

I saw again GP today and she advice me go private, if I need any help. 

Why nhs work like this, I try have appointment  for local neurologist  over few weeks now, and still nothing change. Try contact Romford but them need another letter from gp and my mum every day feel worse!

 

 


#8
Safi As the PD progresses the body's own production of dopamine becomes so low the artificial ldopa levels are like waves of relief. The more you take the higher the peaks and lows of the waves. This rapid rise and fall is what makes you feel worse. Discuss with her GP the option of her being prescribed some Sinemet controlled release as this will lower the wave effect and possibly allow the Madopar to be reduced to 4, 4 hours apart for now. Getting up and about is very tiring but essentially every second of activity is a second of not feeling shakey and on edge all the time. K

#9

Hi Safi

You do not need to pay privately for health care.

Semele is right...phone the Helpline and get advice.

You will be guided to the right way to access care for your mum.

Good luck!

GG


#10

Thank you very much for all replays. 

I will try call today parkinson help line and let you know if they help. 

Mum condition still worse she very shake and tablets not help very well. 

About Sinemet she was try it before and had two many side effects, so unfortunate she don't want take it again. 

Will go again for GP today, hope he help. 


#11
On Sinemet. Was this made by Merck Sharp or was it produced under licence by a 3rd party. I have read that some don't get on with both types and should try both separately.

#12

As a first attempt, try making your Mum take on board more water so that the medication  works better..

We find that this works. Simple but  effective.


#13

Hi kendo. 

Thank you for all your replay and thank you for everybody and Happy Easter! 

My mum had allergic reaction on sinemet, so she can't take it. 

My mum condition same. Don't have any help from doctors and still don't have appointment  from neurology. 

Try call today parkinson help line live message hope them call me back.

Mum shake, tablets don't work long enaff. 

We try take today 2 madapar tablets instead 3  but it's don't work. 

Try new tablets " symmetrel" but nothing change, we read lots of bad staff about this tablets. 

So we don't know what to do. 

Mall this start on February and we try get appointment  every day. 


#14

Left message on parkinson help line on 2 April. Still don't have any returns call. 

Any  advice? Does all UK health system work like this?

we try get appointment from neurology since February!

i very need help. 


#15

Safi,

 

The PD UK Helpline is probably  closed for the Easter week-end although it is normally open from 10 am to 2pm on Saturdays  That's what it meant when it said it was  closed for bank holidays.  Good Friday, Easter Monday,  May Bank Holiday etc.,etc.   I think a clearere message could have been recorded.

.   However,  I have never heard  of anyone they have not gort back to  Try again later on Tuesday if they do not get in touch   Open 9 am to 8 pm weekdays.


#16

Hello Safi,

I hope you have found the help your mum needs but if not then change your GP you can register with any GP who is within a reasonable distance from your home like mine has a 3 mile radius. Some GP's are good some are bad, as for the hospital phone the Dr's secretary and insist on a emergency appointment  it sounds like you mum has advanced PD but PD is not terminal it just make's other problems worse. 

If you have no luck at hospital then call your primary care trust to complain with PD we all have to be prepared to fight sometimes.

Take care my best wishes to your mum xx BB

 


#17

Hello. 

Thank you for all replay. 

I very disappointed with health system. On end we had appointment on local neurologist on 9 may, this since February. 

Parkinson help line return my call, very nice and friendly people but don't give any good advice so it's actually if you need talk they can help, but if you need any medical advice no- they don't help you:( 

Mum condition come worse every day. We wait for appointment:(


#18

Help!

my mum condition come worse every day. Now she feel sick, have pain, tablets stop working and she had problem with moving and sleeping. 

Her appointment with local neurology move from May to June.

please help how should I see doctor quicker. 


#19

Talk today with doctor, she was so nice to call me. 

When we talk she said, she thing my mum had something else not parkinson. She said I don't need call her and she not help me. Why UK system work like this!!!

what should I do now;(


#20

hi dont give up

i would phone your mums GP and get a doctor to do a home visit if she is to ill and cant get to the doctors surgery, get them to check her bloods and urine, my mum has had parkinsons for 15 years, last year her blood haemaglobin levels dropped dangerously low, she is ill all the time anyway but we knew something else was not right the doctor got her into hospital the next day and she had to have a blood transfusion and iron infusion, there could be something else going on with your mum she needs her bloods checked and urine they can tell lots from that

good luck