I’ve been looking at posts for quite a while now but not got around to joining.
My husband has been diagnosed nearly 30 years , having had symptoms for a number of years before this, I don’t think the doctors initially considered Parkinson’s due to his age.
He is still in his early 60’s so was very young when diagnosed.
His Parkinson’s fluctuates significantly, he can go from being reasonably mobile to completely incapacitated within moments. This would result in many falls if someone wasn’t with him to stop them. He often doesn’t realise how unsteady he is so even with intervention we can’t stop every fall.
I have found that NHS doctors , nurses etc. have very little experience of dealing with someone with Parkinson’s, and even less knowledge of how it fluctuates. Is it just us or do others have the same problem with the medical profession not understanding this?
Are there any other people out there who have severe Blepharospams? My husband often goes hours when he can’t open his eyes.
Recently one of his feet is turning outwards, I’ve tried to find information on this but all I can find is information on the feet turning inwards.
Hi and welcome, @parkywife1993. I’m glad you’ve decided to join in on the conversation. That’s a long time to deal with Parkinson’s and it sounds like there are some new issues popping up now for your husband. I hope that others in the forum will be along soon to talk about how they cope with getting care and dealing with worsening symptoms.
Have you had a chance to speak to our helpline on 0808 800 0303. They may be able to fill the gap and support you in the absence of other help.
You mention spasms. This could be dystonia, a common symptom of Parkinson’s. These can be quite severe and even painful. Sometimes some adjustments in medication can help. You can more about this here.
Thanks for speaking out. I hope to learn more about you as you settle in.
Take care,
Janice
Forum Moderation Team
Thank you for the welcome Janice.
I am sure the foot turning is dystonia, he also at times during the day leans to one side when standing and sitting which has caused him to fall out of his chair. We’ve been told this is Pisa Syndrome. It certainly further compromises his balance problems.
It’s strange but even though his foot is virtually right over at times he cannot feel it.
I think the problem with his medication is how unreliable it is now. No two days are alike despite being very strict about the timings. He has significant problems with constipation despite having a stoma (constipation caused his bowel to repeatedly twist which is why he has a stoma created a number of years ago) he is on very high doses of multiple different laxatives which does help but is not perfect by any means. I know bowel problems affect Parkinson’s meds so think it is likely contributing to the problem.
He also has a urethral catheter which is very problematic, he’s waiting to have a suprapubic catheter in the hope this will stop the very frequent blocking. The problems with this have definitely made his Parkinson’s symptoms worse.
He had DBS surgery a number of years ago which only helped his tremor. When the settings were increased it made his balance and dystonia problems worse so they couldn’t do anything more. He occasionally gets very mild dyskinesia which has never caused any problems.
He’s also recently been diagnosed with Parkinson’s dementia.
