I’m 67 years old, married for 42 years, two daughters, three grandchildren and my Dad lives alone and is 95.
My husband was diagnosed in 2022 although I think he had PD for a few years earlier. He’s just changed to Stalevo 150 five times a day plus Co-beneldopa CR 25/100mg at night x 2.
His consultant has also just started him on Ropinirole MR 2mg this week. In my opinion he appears to have deteriorated quite rapidly. I’m worried about his memory as that seems to be deteriorating too. He’s no interest in holidays and I’m very frustrated because I feel like my life is over, with nothing to look forward to.
In addition I help to look after my 95 year old Dad along with my three year old granddaughter on a Monday. I have two sisters but I feel the majority of the tasks re Dad are done by me. I’m being pulled from pillar to post and I’m at the end of my tether.
I see a counsellor on a weekly basis but at the moment I don’t feel like I’m making much progress.
I’m sorry that this is one long moan but in addition to all of the above, my eldest daughter is going through a divorce and has physical and mental health issues. She puts an enormous amount of pressure on me and doesn’t seem to appreciate all the other things I’ve got going on in my life.
As I’m writing this I’m thinking what on earth am I expecting from this post? There’s nothing anyone can do. I need to get a grip and get on with it.
Hi @Mog, welcome to the forum. We hope you find these boards and the conversations inside them useful.
Thank you for sharing your experience. Your commitments sound like they’re a lot for one person to carry: supporting your husband, caring for your dad, helping with your granddaughter, and being there for your daughter would be demanding for anyone.
You deserve space to talk about how this is affecting you, and these boards can be that space for you.
Reaching out here is a good step, and others may have thoughts on what helped them. If you ever need to chat about your husband’s Parkinson’s, or how you are coping with caring for him, please remember our helpline on 0808 800 0303 is here for you - no question is too big or too small.
Check out nicotine patches on YouTube for pd patients some doctors use them for their neurological protection properties.
AI resources I use are Parki bot and grok on X , ask a question about PD and it will provide an answer, saves time trying to find answers. If you use two AI resources you can cross reference the answers.
Good luck with your endeavors and keep your spirits up.
Hi Mog, please try and be strong and positive. You are not the only one feeling like this there are many of us who feel so despondent at times we can’t put it into words. My problem is I try and cope on my own and i have got to learn to open up and talk, ask family for help. Which is what you must do. How would your family cope if you collapsed. Thinking of you.
Thank you for your advice and support. I do try to explain to my family how difficult I’m finding life atm but because I’ve always been a ‘good girl’ and done as I was told, they either aren’t listening or simply don’t care. I’m going to have to become stronger and much better at saying NO.
On a slightly different topic.
My husband has recently started taking Stalevo to replace his previous Madopar and Entacapone. In addition he started Ropinarol 2 mg last week. He’s had gastrointestinal issues for most of his life on and off but over the last few months he’s experienced ongoing pain in his bowels which he describes as wind. However this seems to be getting worse and it’s making him extremely unhappy and unwell.
I just don’t know whether this is due to the Parkinson’s medication or PD itself.
If anyone has any advice I would be extremely grateful.
Hi Mog, unfortunately bowel problems are one of Parkinsons systems. My husband takes Laxido each morning to help constipation and also passes an awful lot of noisey wind that makes us smile as it sounds like a duck. Hope someone comes forward with positive advice.
