His general health.
Dorothy Thompson
Has anyone used the expertise of a Neuro ... - PSP Association
Has anyone used the expertise of a Neuro physiothapist? My son is convinced that it would help his dad with his rigid limbs and probably
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dorothy-thompson
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Hi Dorothy, your son is 100% correct. S has been attending one for a few months now, referred by our consultant. She ran a course of exercises for six weeks, twice a week. They really helped my husband, his movement is a lot better and he enjoyed them, which all helped with his mood. For the last two months, he has been going to a private physio, not a neuro physio, she had never heard of PSP, but very quickly found out what she could and worked out that basically, all S needed, was to keep moving.
He has now been referred to a class that specialise in exercise for Parkinson's and similar conditions, so I have great hopes for that. We don't see the neuro physio weekly, or just S, this is the NHS! But they going to pay for these gym sessions!
Go to your consultant or even the GP and see what they can offer you! If that fails, find a private one, if you can afford it.
Best of luck.
Lots of love
Heady
Dear Dorothy,
All of my husbands allied medical team are specialists specifically employed for their expertise and qualifications related to neurological conditions (EG Speech, physio, OT, Social). To receive such high level of support he is participating in a trial scheme/system being coordinated through the Neurosciences Unit at WA Health dept
He attends hydrotherapy sessions each week or fortnight (when no infections) with two neuro- physiotherapists at the MS Society pool . I think their skills and knowledge were/are better than he previously received when attending physio sessions at the local hospital. Though the senior physiotherapist there certainly had great skills for rehabilitation, she herself even admitted that those with neurological illness need a lot of dedication and different kinds of treatment and prompting to work muscles in different ways. Ironically since John started hydro I've also met a couple of people who received similar support to John and spoke very highly of the n euro-physiotherapists (the other clients had motor vehicle accidents and one was paying about $400 a session).
NB., Its an extremely difficult, almost impossible to get ongoing app'ts with neuro-physiotherapists here -- Not only does it require big 'out-of-pocket expenses - each seema to be linked to doctors already connected to the major hospitals and associations with specifically built hydrotherapy pools solidly 'block booked' months and years in advance.
Wow SharonAB, hydrotherapy pools, therapists with joined up writing that work with neurological conditions, schemes and systems that co-ordinate, what luxury!!
Here in the UK we have, as you know, the NHS, apparently the envy of the world, free at the point of need. Admittedly ,
wonderful in an emergency, but for long term conditions such as PSP etc, you're pretty much on your own. There are the odd visits
to the neurologist that are more or less talking shops with very little in the way of constructive help and where one is invariably told 'you're doing a wonderful job'.
Whenever I hear our NHS being compared with other countries, I think compare us with the best not the mediocre.
I will not be talking to my GP about physio for Harry because it will take forever to receive, I will have to drag him to clinics that may or may not be within easy distance, we will have to wait an interminable amount of time for his "turn" and the whole process will be very tiring both for him and me.
Thats always supposing that he is "eligible " to receive It under the present terms and conditions for 'non-nursing" criteria.
I am going to look into private provision.
Oh dear - you can see, it has been a long week-end, sorry!
Kind regards
Dorothy T
Dear Dorothy, My husband only just scraped in getting the support as there are some pretty strict guidelines - basically it calculated on age, longevity, income, location etc - and my husbands social worker advised that it was set up primarily for sufferers of Huntington's disease (another 'crappy' illness). So I imagine there are quite a few people here also missing out on receiving the 'full services' they need. Ironically I was involved in putting together a report in my twenties regarding the need to coordinate allied public health services and carry out a trial (with it starting 3,500 km away and then to take place in WA) At the time I recall being very removed from the interviews I made and material I wrote. Now many, many years later my husband is on 'other end' and receiving such services
NB My husbands longevity has exceeded the terms for provision of services so I can amusingly recall the interview and questions I was asked as if I had the medical capacity to determine. I laughed and my answer was something like ' Yeah and I know the winning numbers for the lottery as well....' (If you don't laugh you cry!)
in reply to dorothy-thompson
Hi Dorothy,
I just came across this thread just now, and I totally agree with what you said regarding the NHS. It really lacks big time when it comes to dealing with supporting those with long term illness including PSP. My friend whom I care for was told he would receive physio to help improve his movement, but then they told us shortly later that because the PSP was progressing so quickly, there was no point. It really upset us to hear the lack of support being verbalised. I hope you manage to get somewhere going private. Take care.
in reply to SharonAB
Hi Alana
My wife receives one physiotherapy session at home per week under the "high care in the home" assistance package (following an ACAT approval-aged care assessment team).My wife has been helped by a neuro-physiotherapist (that is included in a very small weekly fee for all the many services involved in the high care).
The physiotherapist works with Parkinson's and other degenerative neurological diseases, and has given me confidence to use follow up techniques during the week. Keeping PSP sufferers "moving" is so vital to their overall wellbeing, even though physiotherapy will never stop the progression of the disease.
Cheers
T (Perth -Western Australia)
SharonAB in reply to
Dear Strelley,
I was left wondering about $'s and advise on resource allocations through some companies /associations and workers comp cases. For when I first heard what it was cost I did question in detail, bur didn't think to check about it being available through the ACAT home package. Another reason why I think my husband should have an ACAT for which he still declining. Its great that your wife still receives sessions at home I recall when it was first mentioned it caught be surprise as I didn't think it was something that was required - upon reflection obviously naive.
Regards, Alana
Hey Dorothy,
Where you going, to be told "you are doing a wonderful job" certainly no where I have been. I'm rarely acknowledged that I'm even there! Much less have anything to do with my husband or looking after him!!!
Heady
Hi Heady,
It's ironic isn't it? I usually get those sorts of comments from the medics who have no real idea of what being a carer means. I sometimes long to say to them, yes that's right, I'm doing the job for you.
But seriously, I understand and totally accept that doctors are not miracle workers, they cannot know everything.
Regards
Dorothy T
Hi Dorothy, it's been a while since my mother left us, but she was lucky enough to hook up with a fantastic neuro physio. In those days it was very unusual and he was really researching what benefits he could bring to those with PSP. At the time she had relatively little mobility but it did keep he moving for a bit longer and eased the stiffness.
I remember it was difficult to get her there, but she saw it a bit like day release, well a morning at least, from her otherwise shrinking world. We used to laugh at some of the things he got her doing. It was all NHS funded, didn't last for long, but if you have the strength to pursue it, I'd say do it!
