Looking for advice at the start of a diagnosis

[Denisejoy1]

After 4 years (including a Normal Pressure Hydrocephalus diagnosis - was that ever right?) I am fully expecting a PSP diagnosis for my 83 year old mother in the next day or so. In fact if the neurologist doesn’t confirm my fears I will ask them to explain why she doesn’t have PSP as the minute I discovered this condition and read the sysmtoms I pretty much knew straight away.

I can see from this forum that we have a long and cruel road ahead, but if I might be so bold to ask, is there anything I should know at this stage to ask for, or to ensure she gets in terms of support, medication that might help. I realise there is no ‘cure’ but am picking up that some medicines may help with symptoms or slow disease progression?

Thank you in advance and I will keep you posted as our journey progresses. Feeling a bit devastated at the moment.

Denise

[Yvonneandgeorge]

Denise keep us to date hopefully you will get the answers you need to move on and go forward, we are all here for you xxxx

[Kevin_1]

Hi Denise

As Yvonne has said there is a strong supportive and well informed community here.

And, yes it is terribly devastating at first. As you get your bearings what and how to do things gets clearer and that makes a big difference.

Make a list of symptoms that really worry you and ask the neurologist if he can help.

Key symptoms that tend to appear at some stage which can be helped are:

Poor sleep

Poor or deteriorated bladder control.

Agitation.

Muscle stiffness or pain.

Things like balance cannot be treated.

Get your diagnosis and then you might want to come back.

There are important things like Lasting Power of Attorney you might want to look at .

At some stage you might want to involve an OT (Social Services) - They will put in equipment and can supply wheel chairs free of charge as well as give great advice on moving and handling.

If the diagnosis is PSP or CBD I would strongly suggest you read the PSP Association information pages. They are very good. So is their help and advice line.

Best tip of all - One thing at a time. It's sometimes hard to think clearly with so much emotional heartbreak going on. And if you are the main carer - Look after yourself please!

I hope this helps a little. Do keep coming back here.. no question is too small or silly. We've all had to do the learning curve bit.

Best to you

Kevin

[Denisejoy1 in reply to Kevin_1]

Thank you, Yvonne, George& Kevin. Will be back when I know the confirmed diagnosis. It feels really supportive here already. X

[Hidden]

Most people with PSP don’t get a correct diagnosis at the start. It took a year and a half of test and a new neurologist to get on the right track with Larry.

[Nanny857]

Hi Denise, if your mum is diagnosed with PSP or CBD then look up the PSP Association's website, you will find a lot of very useful info there. You will also get a lot of help and support here from people who have been through it all and those still on the journey . Best wishes, Nanny857 x

[LuisRodicioRodicio]

Hi Denisejoy1!

I regret the situation you are going through.

By private internal mail I send you our experiences in PSP-RS hoping they can be useful.

Hugs

Luis

[raincitygirl]

Hello Denise and Welcome

I'm sorry about your mum's difficulty.

I agree with everyone about one step at a time. Often no two patients get the same symptoms at the same time and it may be too soon to ask about, eg meds for too much saliva now, when that symptom is a "maybe" and could be years away, if you encounter it at all.

You'll find a wealth of information on specific symptoms and problems in the 7 years of historic post strings here. Use the Search PSP Association window in the upper right of the screen or type a symptom or question in Google adding Health Unlocked into the query.

Best wishes to you

Anne G.

[Christine47]

You may find the attached article of interest. brainandlife.org/the-magazi...

Best to you, Christine

[Denisejoy1]

Thanks to everyone who offered advice and information. The diagnosis was confirmed on Friday last week so now we are on the journey. I am struggling to face what is ahead for my mum, she has had such a tough time over the past few years but it is also strangely relieving to know the answer. I will be part of this community and hopefully able to support others once I get more experience.

Denise