Hi all,
My aunty was diagnosed with Parkinson’s disease approximately 8 years ago and, from what we’ve been told, it progressed to advanced Parkinson’s a couple of years ago. I recently visited her in Pakistan and was shocked by her condition. Been staying with her past 4 weeks and she seems to have gotten worse.
Unfortunately, healthcare for Parkinson’s is very limited where she lives. They have been seeing doctors for years, but appointments are very brief and we rarely get any explanation about what is happening or what to expect. Most visits seem to end with a small medication adjustment. We’re hoping to see a different neurologist later today and are really hoping for some guidance. Oh bless you NHS!!
She has a history of depression and other mental health issues, so we’re unsure how much of her current behaviour is related to Parkinson’s and how much is something else.
She is currently taking Sinemet, Kempro (procyclidine), Alzilo and Qusel (quetiapine). Two months ago another neurologist also prescribed tizanidine for muscme stifness, but it made her almost completely unresponsive/“vegetative”, so it was stopped by us
She can now only take a few assisted steps, her speech is very limited, she constantly murmurs, has lost a lot of weight, coughs with almost every drink, and has previously had pneumonia. Although she struggles to walk and needs assistance, she still has remarkable strength in her hands. If she grips someone’s hand or an object, it can be extremely difficult to get her to let go.
She is also extremely dependent on her husband. They are both in their 70s. If he leaves for more than 1–2 hours she becomes distressed, constantly wants to hold his hand or massage his legs and feet, and in the past she accused him of seeing other women. The Qusel i believe helped control that a bit. She still recognizes family members. Her daughter is the main caregiver, while her husband provides most of the emotional reassurance.
One of the hardest things for us is her stubbornness and clinginess. We often try to take her out to give her husband a chance to rest, but she resists going, keeps looking at him, and if we or he say he needs a break, she becomes upset or angry. Yesterday she completely refused to cooperate because i said he needs me time for a bit, so in the end we cancelled our plans because we simply couldn’t persuade her and I got sooo frustrated.
We’re honestly at our wits’ end. We don’t seem to understand what is happening, whether this is progression of Parkinson’s, Parkinson’s disease dementia, anxiety, medication-related, or something else, and we don’t know how best to help her. My uncle has almost lost hope, and one of my biggest worries is the effect all of this is having on his own health given that he is also in his 70s.
Has anyone experienced a similar situation? Does this sound like Parkinson’s disease dementia or progression of advanced Parkinson’s? Are the clinginess, stubbornness and behavioural changes something others have seen? We’d also appreciate any advice on questions we should ask the neurologist today or anything that helped improve quality of life for either the patient or the caregivers.
Thank you very much for taking the time to read this.
