questions for neurologist

[Diggerandsam]

I have recently been diagnosed with psp and am due to see a neurologist next month. I’ve declined quite rapidly since the diagnosis so am wondering if there are any specific questions I should ask. I cannot think of many; I’m just so bowled over by the whole thing

[MLea]

hi, I’m so sorry about your diagnosis. You’re not alone. Im not a doctor, but my husband was recently diagnosed with PSP and has extreme trouble processing the diagnosis. I’m his primary caregiver, so it’s up to me to gather our information. —first things to ask are about medication regiments, diet, exercise (which is paramount to disease stability while you’re in the early stages).

Get a referral to a SLP and start working with the Lee Silverman method or something on those lines (speech groups are great for interactions with others as well), if you can, a therapist is a huge tool my husband uses to process the immense strain of a diagnosis.

All of the information can/will be overwhelming so do your best to take it in small chunks. Most important is attempting to stabilize the PSP—which is possible, my husband is on big doses of sinemet and he’s recently shown signs of stabilizing.

[Diggerandsam in reply to MLea]

Thanks for your advice. I’m particularly interested in sinemet. Sounds promising!

[Bergenser]

I am sorry to hear you have joined this exclusive "club" that no-one ever wanted to be part of. Hopefully you'll have many opportunities to discuss things with your neurologist so don't worry too much about asking all the "right" questions. I agree with all of MLea's suggestions. Preserving your voice, and starting good exercise routines will be helpful, as will exploring available medication such as co-careldopa (Sinemet), Amantadine and Citalopram (or similar mood stabilisers). For some, these can reverse many of the initial symptoms for a good while.

There are some helpful supplements to ask about, such as magnesium (for cramps and restless legs which are common with PSP), melantonin (which might help with sleep issues which are common), vitamin B1 and other vitamins, which may support brain health, and Q10 which some find beneficial.

At this relatively early stage, it is easy to get overwhelmed, so don't worry too much if some of the information you get seems irrelevant. The PSPA can always help you access the information you need, when you need it.

These early stages are your best opportunity to get included in clinical research and trials. Please ask about the Orion trial - others appear to get benefit from this - my husband has advanced too far to get considered. amylyxpsptrial.com/.

Best of luck 🍀. When people are diagnosed with Parkinson's Disease they say "you could have 5 good years". There is no such promise with PSP however you can have long periods where life can feel "normal" and you can focus on life rather than focusing on the disease. Please Stay Positive - and talk to your family and friends about all the things that matter. With love, hope and hugs 💜🌻🫂

[Kelmisty in reply to Bergenser]

My Mums neurologist said I won’t see you again unless you request an appointment in the next two years on a wait list approach.

So you don’t always get to see a neurologist more than twice.

[Bergenser in reply to Kelmisty]

Wow, I guess I don't realise how lucky we have been with regular clinic appointments and follow up phone calls with specialist nurse - as well as a number of research related clinic visits. 🌻

[Diggerandsam in reply to Bergenser]

Thank you for all your advice. Unfortunately I, too, do not qualify for the Orion trial as am totally unable to walk but maybe I’ll still be around to benefit from its outcome

[Pspuser]

Hi, sorry to hear of your diagnosis. One thing to try and get done as soon as possible is to get your voice banked.

This is funded by the PSPA, I don’t seem able to copy the link, but if you search ‘PSPA voice banking’, you should find it.‘

[Diggerandsam in reply to Pspuser]

Good tip, thanks

[Scotty1234]

In a very similar boat here. Main questions I would like to ask relate to likely timescales and hereditary importance. It's a bit unfair on the neurologist having just met us so bear that in mind but I wish you the best of luck

[Diggerandsam in reply to Scotty1234]

Thank you

[Kelmisty]

I’d ask what do I need to put in place for the future, and get it sorted whilst you can.

Is there anything I can do to help slow progression?

[Diggerandsam in reply to Kelmisty]

Will add that to my list, thanks

[Blitzford72]

I'm so sorry to hear your news ,my mum unfortunately was diagnosed last October and it's been a rapid decline .The one thing I would suggest is get your voice bank ,we found out to late for my mum .

The communication seems to be paramount,we have great difficulty understanding what my mum's needs are now ,as her speech is extremely bad .

Get every bit of help and keep banging on doors to get it

God bless

X

[Diggerandsam in reply to Blitzford72]

Thank you - voice banking is now definitely on my list. My speech had already suffered because of my stroke. Fortunately I can still make myself understood, most of the time, but it’s easy to envision a day when I cannot

[Burtz]

Very sorry about your diagnosis Diggerandsam.

CurePSP.Org has a wealth of information and education available to help newly diagnosed patients with questions and practical advice.

You will find it helpful I hope. They also have a YouTube site with seminars, presentations and an “Ask the expert “ section where questions asked by PSP patients and caregivers are answered by a respected neurologist.

[Diggerandsam in reply to Burtz]

Thanks for the info