Hello, my 77 year old Mum was diagnosed with PD in December 2021 after around 5 years of symptoms mainly including severe anxiety and depression, inability to cope, changes in personality and various physical symptoms including stomach ache. She has been on various anti depressants for over 20 years, a few other miscellaneous drugs and now Sinemet. One of Mum’s most difficult symptoms is the stomach ache. She also has a lot of bloating and wind, treated with a range of prescribed drugs, but nothing really seems to help. She has had various tests and scans over the years to rule out anything separate. Her mood is generally very low and last year she was admitted as a (voluntary) psychiatric in-patient when she repeatedly expressed a wish for her life to be over. She is no longer under the care of a psychiatrist but does go to a Geriatrician clinic for the PD, which seems to be the approach for managing the condition in this area. I don’t feel that her symptoms are really being (nor have ever been) managed effectively at all. Her stomach ache can be very debilitating but if I could get her help with one thing it would be her mood. She has demonstrated increasing apathy and lack of interest in things for many years now and in many ways is unrecognisable as the active and engaged person she once was. I have tried so many times to set out her symptoms and behaviours in the hope that the various medics can help (in the end I suggested it might be Parkinson’s as my Great Aunt and Great Uncle had it, after much prevarication a DatScan was done which confirmed this). I feel helpless and long to be able to make her life more bearable physically and generally happier. Sorry for the lengthy note but this has been a long journey, often feeling like a battle to move diagnosis and treatment forward. The medical consensus seems to be that with PD, low mood is hard to treat and everything has been tried. Any suggestions really welcome.
Hi and welcome to the forum, @HopefulDaughter. You’ll find the members here very supportive and I hope some will be along soon to chat to you about this.
It must be really hard to see your mother going through these changes and especially with this pain. I’m really glad to hear that it’s been investigated. Have you had any success with finding coping techniques along the way, and has the pain ever been associated with any of her Parkinson’s medications? Some of them do upset your stomach.
No wonder her mood has been so low. Living with chronic pain is a very difficult path to tread even without the addition of having Parkinson’s. On the other hand, she is lucky to have you at her side making sure that she’s OK and seeks help when it’s needed.
Do you have any help yourself? Taking care of someone with Parkinson’s is a big job and it’s important to keep your own needs in mind. You can read more about this if you click here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons.
Very best wishes
Forum Moderation Team
Thank you for your kind message Janice. The pain pre-dated her diagnosis (and treatment) by quite a few years, so I’m unsure of the cause - it may be part of Parkinson’s or not. I have wondered about things like massage, reflexology etc to see if they help - there’s already a very long list of tablets that Mum takes it would be good to try something different.
I have lots of support from my partner and my friends, but am an only child. My Dad passed away a few years ago. I just desperately want to do the best for Mum.
I too care for my mum who has had PD for many years.
You haven’t mentioned whether yr mum has any issues with constipation? I suggest it because it is sometimes one of the earliest symptoms before diagnosis, also the PD meds have this as a side effect. My mum suffers with bloating and sometimes pain which is related to her gut being slow cos of Parkinson’s. She has recently started a movicol type med which has helped with the discomfort and the constipation. Sometimes I dont think that she realised that she was constipated so this may be an avenue to pursue with your mum.
The personality changes and depression that come with PD can be debilitating even for the carer as you know. I hope that you are getting support for yourself. Apart from this forum, CarersUk have lots of support and advice. As advised above, please find time for yourself, even if its just 5 mins with a cuppa watching the wind thro the trees!
Good luck, wishing you all the best with yr mum. Don’t be afraid to return to the forum if you need to rant and defuse! No one will think badly of you as we are all going thro it!
Much love Abi
Thanks so much for your kind reply Abi. We are currently exploring care homes for my Mum as I’m worried about her on her own and the daily carer visits just aren’t cutting it. Yes, Mum has constipation and that is certainly part of the problem and we have tried various remedies, but her depression I think makes her experience of the symptoms that much worse Thanks again for your kind words x
Oh I do hope that you are able to find a good care home that can meet your mother’s needs! I wish you luck in your search for the right place for mum.
PD does seem to have an element of pain associated with it for some reason. I know when mum is ‘off’ she complains of pains in various parts of her body and as you say the depression only compounds the issue!
Well done for all that you have done so far to get help for your mum.
Kind regards Abi
I’m really sorry to hear about your mum’s struggle with PD and the accompanying stomach issues. It sounds like you’ve been through a lot on this journey, and it can be incredibly frustrating when it feels like you’re not getting the answers or help you need.In addition to the prescribed medications, have you ever considered looking into probiotics for her stomach troubles? They’re known for supporting digestive health and might provide some relief. Just make sure to do some research to find the right probiotic that suits her specific needs. Everyone’s gut is different, so it might take a bit of trial and error.