Hi All, i am new to the forum, my mother (59) has PD


#1

Not really sure if this is the best place to post, but my mother was diagnosed with PD over 2 years ago, she has one side weakness, extreme backpain and struggles to walk. 

Whilst she is on medication, she feels like the system has given up on her, long waits between appointments and comments like 'there's nothing else we can do for you'

She had been given a course of physio for her backpain but after this was told there was no point continuing as it wasn't going to help.

A back massage is the most effective way of relieving her pain, has anyone heard of therapeutic treatments like this on the NHS?

She is not a pushy lady and I live too far from home to attend appointments with her at the moment although i am trying to organise moving home to help. it just feels like she is getting no help.

Sorry for the rant! 


#2

Hello misspc

im sorry to say I don't have the answer to your question re nhs complementary therapies but it's worth asking the help line or her own surgery. Your mother deserves any support She can get. I wish her all the best.  Sue


#3
Hi misspc, It must be very stressful for you. I know we say this on the forum alot but does your mum have a PD nurse? A good one is invaluable and can move things along quicker or at least investigate some options re:therapy etc. I also think being told there's nothing can be done is outrageous. Is there a local group she could contact as other people going through the same thing might have ideas to ease her pain. Hope you can sort something out.

#4

Hi misspc,

Sorry to hear that your Mum is getting such poor attention for her Parkinson's. Unfortunately, I've found that you have to make a bit of a fuss and get yourself noticed, before you get anywhere with the neurologists or PD nurses, otherwise they tend to put you on the back burner. They are so stretched and short staffed, that anyone who doesn't make a noise will not get the attention they deserve. What medication is your Mum on? I can't believe they've tried everything in the 2yrs. she's been diagnosed. I have one side weakness and slowness and used to get terrible back and shoulder pain, but since being on Madopar, all that has improved. I also get relief from a massage, but I have to pay for it. If you're very lucky, I think some hospitals do provide it on the NHS, but not many. Perhaps you could talk to the hospital and complain about your Mum's treatment. She is still young and has many years ahead of her. There is more they can do for her, I'm sure.

Best of luck.

Twinks.


#5

Hi All, Thanks so much for your lovely replies. I am back in Northern Ireland in the next few weeks and plan on trying to talk to her doctors. She has been in touch with a parkinsons support group but not im not sure if she has a dedicated PD nurse. 

Pam 


#6

Hello misspc

                            Go to  your GP and ask for  a  referral to Physio,  add  that  you  want to  try Acupuncture, in fact insist  tell  the Doc how much pain your poor Mum is having to endure and lay it on  there is no  such  thing as  nothing more  they  can  do,there are many things that can be done, in my case I had horrifying pain in my neck and shoulder (right) and my physio suggested  acupuncture  well nothing gained without a venture when a black bird sings,,yes I dont know  what it means either, my  gran used to  say it,  so  I had a course and in two weeks,, no  pain such relief  misspc

 

                                               try it  FED4