hello I’m new

[Tulip1707]

Hello everyone,

I’ve joined because of my mother in law. She doesn’t have a formal diagnosis but after hours of research PSP seems to be the only condition that fits so I hope this is acceptable - I’ll explain, apologies for the long post.

Around 6 years ago my mother in law (MIL) now aged 81 started no notice issues with her speech, pronunciation became problematic. She was frightened that it could be the beginning of dementia and was reluctant to seek help. After a year we persuaded her to go to the GP and she was referred to a neurologist. The neurologist was very thorough. CT scan, MRI scan, Nerve tests, blood tests. Many things were ruled out but no definitive answer. The neurologist suspected Myesthenia Gravis but after a few months on medication (with terrible side effects) and no improvement she suggested seeing an expert in the condition and he said he didn’t think it was. Since then, nothing.

it seems that the NHS, having drawn a blank, just left her to it. A speech therapist visit was arranged but she said there was nothing she could do.

The years ticked by MIL’s speech declined with every year (now almost completely unintelligible), she became progressively weak and after several falls at home and a extended hospital stay at the end of last year, it was decided the only safe place was a residential home.

So her we are, a fall approximately every week to ten days. Incredibly weak, severe fatigue, walks with a shuffle, barely able to lift her feet off the ground. No speech. Still has mental capacity though finds using the speech app on her tablet difficult - I’m not sure if it’s the typing or the concentration to form the sentences. Looks at you very vacantly much of the time and smile is forced and rigid, sometimes has an expression of distress even if she isn’t. Has to have a tissue on hand all of the time due to saliva. Sometimes laughs hysterically or cries - in what seems disproportionate to the situation.

We were disheartened when the drs seemed to wash their hands of her but I suppose we could have pushed for more but to what end? Whether it is PSP or something else, we know that it is highly unlikely to yield a ‘cure’ or treatment.

So that is my Mother in Laws story. I feel so sad for her. I have joined in the hope that I might read some useful information that may help, as whatever terrible condition she has takes more of a hold over her and we can make her life as good as we can.

Thank you for reading.

[Motts]

Hi Tulip and welcome to this group of understanding and supportive new friends. It took my mom years of searching before she was told she had PSP. Then we started researching because we had never heard of it. You will find a lot of helpful information on this site mainly because the posts are from folks dealing with PSP. Sending Hugs of Encouragement... Granni B

[Tulip1707 in reply to Motts]

Thank you for taking the time to reply. Reading some of the posts here, it is the first place I have read about people having the similar symptoms as my mum in law so diagnosis or not I think it will be helpful.

[Joluu]

Hi Tulip. I was an unofficial member of this group for years before mum was diagnosed with PSP. I would look at the posts for ideas as I was convinced she had psp. I thought for a long time about whether a diagnosis would make any difference but pushed for one anyway and although it's made very little difference to mum it's helped me and others understand her difficulties more. Whether you decide to push for a diagnosis or not you'll get lots of support and ideas here.

[Tulip1707 in reply to Joluu]

Thank you. My initial reason for joining was that- that this would be a good place for ideas and support going forward. I'm not sure there is much to be gained from an official diagnosis- in fact I fear it could actually frighten her and make her anxious at this point. We just want to make her as happy and comfortable as possible.

[David750]

Hi Tulip1707, I completely empathise with your very difficult situation. All you describe does indeed indicate PSP. Symptoms my wife had. You will find great supoort in this group, but it would be of greater support if you could talk to someone now. If you are in the UK please phone the PSP Association helpline to talk your problems through with them. They will know of the support available in your area to meet your circumstances and can send information to your GP if necessary. 🙏

[Tulip1707 in reply to David750]

Thank you. Feeling more empowered this morning after reading all the replies- time to take action!

[lunarquasar]

Hi Tulip

If you live in the UK I would have a look at the pspassociation.org.uk web site from there you will be able to get the helpline number and have a chat with them. They help people with PSP or CBD. If you live near Southampton there are two Neurologists at Southampton General Hospital who specialise in PSP and CBD. It is possibly something completely different as there are so many other things it could be when dealing with the brain.

Good Luck

Barrie

[AliBee1 in reply to lunarquasar]

the two at southampton are certainly marvellous. we were lucky to find them and Jade.x

[Tulip1707 in reply to AliBee1]

Unfortunately we are in the Midlands but we are going to contact the neurologist we saw previously and take things from there.

[AliBee1 in reply to Tulip1707]

good luck x i am so glad that you have found this forum as you will get so much support and sensible advice from here internationally. it was my godsend when my husband was still alive. the advice you have been given by others is excellent especially talking to pspa. go armed with as much info as you can written down. there are other conditions which are similar but a brain scan will be more conclusive. my husband was diagnosed with cbd and that took two years, but a true diagnosis of cbd or psp can only be given by brain donation post mortem. apologies for no capitals but am typing one handed following a fall. love AliBee

[Martina_MP]

Your MIL sounds very similar to my mother several years ago. The laughing/crying/grimacing is called pseudobulbar affect and in my mother's case lasted maybe a couple of years.

When things change, ie new symptoms develop, I think it is worth having the neurologist see your MIL again to re-evaluate, as sometimes syndromes take a while to declare themselves and fit the descriptions in the books; they may be able to help your MIL get equipment, therapies, and support for you and the family; and they will learn from the experience and be better prepared for the next person.

You are taking the right approach, and your care, concern, and interest in finding practical solutions will be very helpful in helping your MIL and family adapt to the continuously evolving situation.

[Tulip1707 in reply to Martina_MP]

We've had a long chat about it this morning and my husband is going to contact the neurologist again as we have her contact details. We are going to list the new symptoms since she last saw her. I think it is the right step to ensure she gets the appropriate help as her condition progresses. Thank you.

[Willowden]

Hi, a lot of these symptoms sound similar to my mum- if we had shares in tissues we’d be millionaires!

The neurologist doesn’t provide much help but the diagnosis means I can firmly explain to people that mum doesn’t have dementia plus it provides access to other support like Speech and Language therapist, Parkinsons nurse etc who have provided great support on the roller coaster journey.

Best wishesx

[Tulip1707 in reply to Willowden]

thank you. We do tell people that she understands and doesn’t have dementia but it makes little difference, we fell that the carers at the home are very patronising when they talk to her - but we try not to judge, they are very busy and communicating takes time and effort.

[Purrlie]

Hello Tulip1707, My husband developed an assortment of symptoms (shuffling gait, almost falling backwards, frozen facial expression, difficulty swallowing, choking on excess saliva, eyes closing involuntarily, slurred and then unintelligible speech, sensitivity to light, blurred vision--and not all at once, but all of these eventually) and the neurologist considered Parkinson's, Parkinson's-like conditions, etc., but it was consulting with the neuro ophthalmologist that persuaded him in the end that, along with everything else, it was PSP, as Bill could not move his eyes up and down or from side to side. That may be a symptom to take into consideration that may help with the diagnosis if you find that is the case with your MIL.

All best wishes to you and your family, Purrlie

[Tulip1707 in reply to Purrlie]

we aren’t sure about her eye movement - so it is something we can look out for. Thank you - I’ve made a note of your comments about the ophthalmologist.