I am interested to know how you get a neuro physio or which exercises I could do to help my husband. My husband was diagnosed with PSP/CBD in 2013, but since being admitted to hospital in Norwich in September for 2 weeks returned home unable to walk. No-one would get him out of bed when in hospital as they said he might get up and fall over. Since then I have asked the GP and OT if he can have any physio as he can no longer stand and his left leg is contracting. They say there isn't anyone who can help. He has just returned home from 16 days in the same hospital and yet again no-one would get him out of bed. (The physios would daily get out an elderly gentleman, who was very poorly and sit him in a chair, he died last week!)
My husband was always so keen on keeping fit and used to run 3 miles twice a week, do weight lifting and specific exercises from a book. It is devastating watching him being hoisted from bed to chair and back again.
I'd happily pay for someone to come out to help him.
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AMJ4
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I A M SORRY THAT YOUR HUSBAND WAS ONCE SO FIT - IM THE SAME BUT HAVE NEVER HAD A NEURO PHYSIO BUT AN NHS ONE AND A PHYSIO FM THE RE- ENABLEMENT TEAM WHO CAME TO THE HOUSE AND GSAV ME EX S FOR MY LEGS MAINLY
I AM NOW USING A WHEELCHAIR INSIDE AND OUT SO MY FALLS ARE A LOT LESS NOW
BUT I T TAKE S ME FOREVER TO GET ANYWHERE IN T HE APARTMENT SAS IT IS A HANDS ON CHAIR
As far as I know there isn't an ordinary NHS Physio available either in our part of Norwich. I would really like to know the types of exercises I could do for my husband to stop his legs and arms from being so stiff.
The carers are now saying I have to buy him some extra large T-shirts as they are worried when trying to get him into his shirts and jumpers as he is so stiff and clutches his hands together, that they might break his fingers or dislocate his shoulder.
He still takes Co-Beneldopa 3 times a day, but that seems to have more bad side effects, (agitation, hallucinations) than positive outcomes now.
He has a tilting wheelchair which he can sit in for a change from his rise recliner chair. It also means a different view for a short while. Sadly, I cannot take him out in it as the chair is so large, I would need a much bigger vehicle than my current Nissan Note.
I just feel so sorry for him, especially with the Spring coming, knowing he won't be able to walk or even go out any more.
Yes its devastating to watch, and so tragic there's no resources available to help. I am 79, diag 3 yr ago, and still not much degeneration, which surprises the medics. I am less fit than before with Covid lockdown. I have opted for a health regime of specific dietary, exercise, lots of supplements, an no shots! I have a 3 page write up of progress and options, etc. If you like a copy, pls send ur email so I don't clog up this space. Best wishes to you both, KOKO, keep on keeping on, and PSP = Please Stay Positive!! Timbow
Hello AMJ4. I run the Herts MS Therapy Centre in Letchworth, Hertfordshire. Because of that I know that the 50 independent MS Therapy Centres around the country often (but not always) have a Physiotherapist on staff who has specialised in Neurological Conditions. Some of these centres (like mine) is also open to treat people with any neuro condition, not just MS. They usually charge something because the NHS is not paying their bills. but fees are kept as low as possible. You can always look to see if an MS Therapy Centre exists near you at msntc.org.uk and then select "Find you nearest Centre". As you mentioned hospital in Norwich, I can tell you there is an MS Therapy Centre in Norwich at mstcn.org.uk/physio/4582802465 where the Neuro Physiotherapist is Dr Wendy Hendrie. She will be a great person to talk to on 01603 488561 / 485933. I'm sure she will have ideas of local people for you. Perhaps even that MS Therapy Centre.
Well done a million times for being so straight and practical, what a wonderful site this is the way it gets things done, in such a practical way, wish you all god luck
Hi, I have had private Neuro Physio come to the house. I got him through a recommendation from a private hospital that S had knee surgery. I'm sure you would be able to find one on-line. If all else fails, ring a local normal physio to see if they would do home visits. Can't believe they wouldn't (for a price!). Or even someone that does massage, anything to get your husbands limbs moving!
Have you been in contact with Marie Curie? They offer a "friend" service, someone comes to visit once a week for a couple of hours, to chat to your husband. They sometimes take people out, which might help, if you are struggling to get him out. Also, there are specially adapted taxis around, see if there is one in your area.
Also, try ringing PSPA and talk to them, they should be able to advise you other avenues you could explore. Another place you could try is the Parkingsons Association, they seems to be quite proactive. I have just been offered a days pampering and they will have S for the day! Unfortunately, can't make this month's, so I have been put down for the next one!
Don't give up, I'm sure there is help out there, you have just got to keep trying everything and anything until you find it. Best of luck
Thank you Heady for the advice. I won't give up, but at times it is so tiring looking after both my husband and my elderly Mum. I'll phone PSPA and Marie Curie tomorrow and I am going to the Norwich Parkinson's meeting on Tuesday. I have looked on-line but am cautious about asking someone I don't know to come as I'm not sure of the correct qualifications to look out for.
The pampering day sounds bliss. I'm sure you'll enjoy it.
Just read your post and know exactly how you feel, my husband was given a 6 week course on the NHS with a neuro physiotherapist which seemed to help him a lot. However after it finished and a couple of weeks later I asked his doctor if he would be entitled to home visits as he has become more and more unsteady and I now find it very frightening to take him to the hospital as his balance has deteriorated so badly. He said he would make some enquiries and let me know, several weeks later after no response I decided to enquire myself, it sadly appears that if you want something doing you have to do it yourself or you could be waiting forever! We have since had two home visits from the neuro physiotherapist, she is coming again this week and has supplied him with a walking frame to use around the house and has ordered him a lightweight wheelchair so that we can go out again!
All I can advise you is to PUSH PUSH PUSH for the help you need, it is out there!
Thank you very much, Pat. Yes, I have already looked at the website Mark suggested and found the Norwich MS Centre is only 2 miles away! Will start phoning the various people suggested at 9.00 am.
My husband in only 18mths into PSP but when we saw the Neurologist last week, he actually called a Specialise Physio in to talk to him and they are arranging wkly appts for my husband.
As you are in Norwich, have you looked on the main PSP site to see who your Specialist Care Advisor is for your area. I found ours for the South West and she was brilliant, sorted out so much for me that has taken stress and pressure off leaving me to do the main job of caring. Also our L/T Social Care team have provided a four wheeled walker with a seat for him to use outdoors and in the communial areas of our retirement accommodation, it has helped his confidence in walking no end - he still struggles to go up slopes somewhat but otherwise is walking properly again - he only shuffles when using his stick.
Hope you can get sorted out.
More than happy to post again when we know what the exercises will be after our first appointment with physio
Thank you, GillJan for suggesting the Specialist Care Advisor. I have spoken with Jan this afternoon and she has come up with some numbers to try.
Our OT has provided us with hoists, hospital bed and through her we now have a Palliative Care Nurse. I just don't want to let my husbands legs and arms contract further if there are exercises I could do with him to help.
Get back in touch with the hospitals occ therapy department. They should have referred you to the community occ therapy and physio team. Im sure everywhere cant be that different. We live in Newham in east London. Mum was seen regularly whilst in hospital for 10 weeks by the physio and neuro occ therapist. The neuro occ therapist arranged for equipment to be sent to the house ie a hoist. We already had a hospital bed.
If you cant get help there contact social services and get a social worker which you should have assigned to you. Your district nurse might also be able to help you too.
There should be a community neuro occ therapist and physio available and you have a right to access to them.
Funny enough the hospital neuro occ therapist contacted us today. She was checking if the wheelchair service had made appt for mums new tilting wheelchair, whether community neuro occ therapist had been in touch and also to send another hoist out.
I do hope this helps. You really have to be firm with them. The physio done wonders with mum getting her at least moving her hands again..
I have just spoken to a most helpful receptionist at the Single Point of Contact for North Norfolk, she is going to request an urgent referral for a Neuro Physio for my husband. She cannot understand why the Norfolk and Norwich hospital Physio hadn't done this in October 2014!
This centre is where you can contact the Community Matron, District Nurses, OT's and Physios and apparently there are 4 of these centres for the different parts of Norfolk.
I contacted the stroke ward of my local hospital today where my husband has been a patient several times, and spoke to the deputy sister. She is going to ask the Physio to ask why a referral hasn't been made, this time or in the past. She has asked her to contact me...... I'm not holding my breath.
I feel the Physio thinks other patients recovering from strokes need more attention. As I said in my initial post, they got a poor 88 year old gentleman up to sit in a chair every day even though he was dying and all he and his family wanted was for him to lie in bed.
I do have contact with an OT and recently a Palliative Care Nurse, who is trying to find out of a local hospice can offer physio.
I'll try Social Services and the Community Matron next.
It is a common problem with PSP. Due to the declining communication of the brain with the muscles they start to contract, pulling your hip out of line, causing problems with arm, shoulder and neck. There is only one remedy and that is not the preferred method of GPs to load you with pain killers. You need to see an osteopath to establish any skeletal issues and get them addressed. And then massage, minimum once a week is required on-going. Because any skeletal issues will return due to muscle contraction. The best thing is to find a sports injury clinic where they do that sort of thing, or find a gym and see if they have personal trainers that are qualified for sports massage.
I have now heard from a Neuro Physio who is coming out this Thursday, so depending on what she says, I shall contact an oesteopath etc.
Michelle, who is a receptionist at the Single Point of Referral for North Norfolk, put in a request late yesterday afternoon for an urgent referral and the Physio phoned at 9.30 am this morning. How about that for a rapid response!
Thank you, Michelle, you are amazing.
Thank you to everyone who has responded with advice, I have much appreciated your involvement and support.
We had good luck with the LSVT Big program, which is for Parkinson's patients. Unfortunately it was offered a long way away for us and we could only get 6 weeks of appointments anyway, as insurance wouldn't cover more. It did help a lot, though. For a while he was even walking without a cane.
What exactly is that programme? I think i had read previously about big movements, but when I mentioned it to my OT she said she had never heard of it. I don't think it is on offer in East Anglia.
So pleased you had good results, at least for a while.
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The best yet. !!
Hair washing & sleeping alone 
steve and psp
