New(ish) diagnosis.... what helps?

[Epsilon12]

My wife (79) was diagnosed with PSP last April, and seems to be getting weaker by the day. Due to see neurologist again in a couple of weeks time. Before that, she had over a year of being diagnosed with ME/CFS, but then the neurologist picked up on restricted/slow eye movements. Main problems are balance, sleeplessness, sweats and shortness of breath (the last doesn't really seem to fit PSP symptoms). What has helped? Neurophysiotherapy (private due to a long NHS wait), and cranial osteopathy. Would like to hear other experiences. Speech is slowing and slurred, SaLT don't seem to be able to offer much except monitoring. We live in West Sussex, UK.

[easterncedar]

So sorry about what you are going through. I have said many times here - sorry to repeat myself - that we had good results - however temporary - from the LSVT Big and Loud programs, originally designed for Parkinson's patients. There is a PT (big) and a SALT (loud) component. It was surprising how my guy's speech was perfectly clear for about 24 hours after the speech appointments, and the verbal exercises we did were kind of fun. Even if you can't get access to a real program, there are some videos out there that may help in the meantime. The original non-LSVT speech therapy exercises to help swallowing were very good, too, and I think saved him from aspirating. Being mindful in swallowing seemed to resonate.

[Zerachiel]

Hi, I can only offer a few thoughts on the speech from our experience; my wife's speech is very slurred and quiet, her speech can come out remarkably clear if she changes her voice, for example, pretend to be stern or put on an accent. Sadly she hasn't mastered this in everyday automatic speech but when she puts her mind to it it can work. It is very difficult to relearn what you have done all your life.

[AJK2001]

Hi glad you have found this group, though of course sorry you have had to.

My Mum was diagnosed with PSP at a similar age to your wife, mainly on eye movements & backward falls. As the condition progressed she had times when she was breathless & appeared to pant. This was often after eating. The explanation we were given was that the mobility issues effect everything & so breathing was becoming harder work and generally Mum only used the top part of her lungs but every so often she needed more oxygen and would breathe more deeply, the amount of effort this took, made it seem like she was panting.

With regard the SALT, I would ask them for exeercises to help with keeping the speech muscles toned up. After seeing coomments on here about people finding vocal exercises useful, I asked our SALT lady for some for Mum. She said that there was no study that suggested they were useful for patients with PSP. I asked has any studies been done on PSP patients, due to the low number of sufferers I thought it unlikely and she couldn't answer me, but she duly gave us some exercises to do and checked them every time she called. They were simple things like humming, doing La's as low a pitch & high a pitch as she could & repeating short phrases as loud as she could - such "a cup of tea please". We did them together especially the La's so Mum didn't feel too daft doing them on her own, but I think she did do them when I wasn' t there as a carer mentioned she'd arrived to Mum Laaing.

Another lady I know took her Mum to a singing class, it was specifically for older people and nobody cared if someone was out of tune. Her Mum loved it.

I think even with PSP the old adage if you don't use it you lose it, stands good.

[LuisRodicioRodicio]

Hi epsilon12!

By internal mail of this chat I send you our information and experiences after 8.5 living with PSP. Also and although the symptoms in this disease are erratic, they appear as if it were a roller coaster and that each patient is a similar but "different" case, I am sending you the symptoms that you may find depending on the progression of the disease.

Hug, luck and courage.

Luis

[Epsilon12 in reply to LuisRodicioRodicio]

Thank you for the VERY VERY VERY helpful information.

[highopes]

Hi, so sorry that your wife is suffering with this awful disease. My mother was diagnosed with PSP 2 years ago, aged 82, after many years of being fobbed off by various doctors. The Neurologist at the time did not offer any follow - ups or referrals so we ploughed on as best we could. Unfortunately, in January of this year she was admitted to hospital with a DVT and after nearly 3 weeks in hospital was unable to weight -bear or walk again. She was discharged to a local care home, where she has been for the last 6 months. She has suffered a few falls, mainly backwards, over the years. She has the eye problem, very rigid in her torso and not able to do anything for herself. As far as her voice is concerned, the only thing I have noticed is that it is much harsher. Thankfully, she is managing to eat her food, although very deliberate and clumsy sometimes. We now have an appointment, in late August with the same Neurologist after a long battle!I don't know if this will achieve anything but hoping he will refer her for physio etc. If only to retain what upper body movement she has left. We live in Surrey and I am curious as to how you managed to organise the Neuro-physiotherapist privately? This is definitely something that I would like to look into, especially if the Neurologist doesn't offer any support.

[Epsilon12 in reply to highopes]

Sorry to hear of your experiences. We got contact details of the neurophyio from a regular physio we were already seeing. But googling neurophysios in your area should bring up some possibilities.

[highopes in reply to Epsilon12]

Many thanks, googled and found one serving our area, going to contact.

[Birdman42]

Hi Epsilon12. It sounds as if this is your first post - if so - let me add my welcome to the site nobody really wants to belong. Please do not take that as a negative because their are many wonderful, kind, helpful and informative members of this site both living currently with PSP and with loved ones who are no longer with us. The major benefit of this site is that you can ask any question no matter how trivial or how complex and you will always get an answer, not necessarily the one you want to hear, but one you can ruminate on before talking to your doctors and other professionals. My wife also has very little voice left but our SLT is full of suggestions, first search the internet for ‘Parkinson Speak Out Voice Exercises’ they do help, second she suggested using using two apps Verbally which is free and Predictable which you pay for. These allow you to type and it converts it to speach (my wife has eyesight and movement problems which means they are difficult to use). Just remember PSP affects muscles so anything that requires muscle usage can be affected.

We are in Hampshire and we have an active PSP Association support group and if Sussex has one I would highly recommend joining it (we have members from Sussex and Dorset). Please join a group, as a carer you are not alone. Alan

[Epsilon12 in reply to Birdman42]

Many thanks for your kind and helpful post. Yes we have accessed the Speak Out sessions. Our SaLT lady is NOT as helpful as yours (we found Speak Out for ourselves): she seems to be bound by bureaucracy. We have joined the local PSP Group. Thanks again: it would be nice to have your phone number sometime - you can send a private email though the Forum.