Sudden deterioration after inhaler

[Mary82]

Hello everyone,

Thank for having this online community and support. I am new to this site.

In 2014, my father fell and hurt his head. Following this he had slowness in movements. He was diagnosed with Parkinson's. Two months ago, the diagnosis was changed to PSP. We don’t know what stage he is in. Any guidance on this is appreciated.

He has muscle stiffness - more on left side, speech slurring, constipation and coughing. No tremors. His symptoms are managed with Sinamet, laxatives and cough meds. Recently he has also started taking Symbicort inhaler for cough. However with that he had some mild tremors in his left fingers (most rigid movement). Suddenly he has become unable to move with extreme muscle stiffness. I am wondering if anyone has taken Asthma/similar inhalers and seen similar side effects. Or whether such overnight deterioration is the nature of the disease.

Thank you for reading. God bless you all.

[Sawa]

Hi Mary82,

This is the first time I'm the first to reply. Welcome to the site! Sorry that you needed to find us, but glad that you did 😊

I'm afraid I don't have an answer to your question regarding the inhaler as my husband didn't ever use one. However, as far as the stages go, you can find some guidance on the PSP Association and Cure PSP websites. The question has also come up many times on this site. A quick search will bring up a list of those posts and replies.

I completely understand your need to categorise and understand; I was the same after my husband's diagnosis. Forewarned is forearmed when it comes to caring for someone with PSP. However, the stages are a bit of a fuzzy guide. While there is a list of symptoms that most PSP sufferers experience over the duration of the disease, they are not always in the same order or level of severity so it's difficult to pinpoint with absolute accuracy what stage someone might be in. Sometimes symptoms can also be caused by something other than the disease. Infections or medicine imbalances, for example, can exacerbate symptoms that disappear later, so it's important to keep being open to things not necessarily being caused directly from PSP. Once you've got your head around the general progression, try not to get too hung up on 'stages' as it's unlikely to be such a neatly organised journey, more like the craziest roller coaster ride!

The rest of the amazing people on this site will chime in with their advice soon. I would just say that here you will find answers, support, humour and a haven. Ask all the questions you want, someone on here will always be able to help.

Sawa / Sharon

[raincitygirl]

Hi Mary,

Welcome to this site! I hope you'll find the information and moral support that we all have There are more experienced PSP caregivers than me to respond to you, but in the meantime I'm curious: Was it a neurologist who diagnosed PSP? I notice you mentioned your father's symptoms are being managed by Sinamet: I've always heard on this site that Sinamet has no affect on PSP patients.

I hope you'll get answers to your question about asthma inhalants soon.

Hang in there!

Anne G.

[JA10]

Hi Mary

My Mum takes two different types of asthma inhaler, but not symbicort, so I don't know if that specific drug would make a difference. Last time we saw her neurologist he reviewed her entire medicine list, which due to several different conditions is extensive. He then wrote to her GP suggesting some changes, I think mostly to ensure that they didn't affect the PSP. Maybe you can ask at your next neurology appointment, or ask your GP or pharmacist to check that there is not a clash of drugs going on.

Julie

[JR61]

If the next Neuro appointment is not for some time, try ringing the Neurologists secretary to report a change and ask that they ask the neurologist for advice. They may ring you back for a telephone consultation. This is what our neurologist said to do if there were any sudden changes. Or you could ask the Neuro Matron/Parkinson’s Nurse if you are in the U.K. PSP is erratic and unpredictable so lots can happen in between appointments and it’s scary to manage without medical advice. Good luck. Ruth x

[Mary82]

Thank you all for your kind replies. The community here is truly a blessing. Yes, he has a Neurologist who made the PSP diagnosis, and a Pulmonologist for the coughing, and weekly PT for mobility.

Some evens happened since my post. He developed a fever and was taken to the hospital soon after. It is lung infection from fluid (saliva) collection - his fourth since PD and second in last 3 months. It is unrelated to any medication. I am so scared for him. He is 70 with no other serious health issues. My mother is his care taker, she is our rock. My parents are back home in India. I live in the US. I will be going to see them right away. I am creating my todo and medical-shopping list. I will create a new post to ask what I should buy. Thank you all again for your help! Love and prayers to all of you.