Firstly I would like to thank everyone who responded to my previous post about what to ask a Neurologist, it took a load of pressure off myself that actually it wasn't down to me that we got nowhere, that's the nature of the beast. I even began to feel a little sorry for the guy, I mean what job satisfaction can you gain from seeing people & knowing you can't help them? It must be depressing surely?
Anyway after all that, we didn't actually see the Neurologist but a Senior Nurse Practitioner who has years of experience in dealing with people with different "unusual" neurological conditions and really took the time to talk to Mum and try to understand the difficulties Mum faces day to day, staring at the top (eyes) and working methodically through to the bottom (feet). Mum for once felt listened to and I felt we gained some practical suggestions & referrals that might help such as:
1) dietetic referral (due to recent weight loss)
2) neurophysio referral (Mum has previously only seen the community rehab team)
3) Speech therapist to be asked about a microphone for Mum's quiet voice & exercises, she suggested Mum tries to sing along with the radio. There is a difference of opinion here in that Nurse Practitioner is of the "use it or lose it" school of thought, whilst our speech therapist believes exercises only result in fatigue & will make things worse.
4) Review of eyes drops - would a spray for eye lids be better?
5) Use straws with valves in - don't take so much suck to get liquid into mouth once you've done the initial suck & delivers more of a controlled dose into mouth, which is easier to manage, so less choking
6) Lindy Loops to keep eyes open - some contraption that attaches to glasses and is used for short period of time to keep eyes open. Has anyone tried these? I found them mentioned in a post about 4 years ago but have found nothing on the internet about them - only get the Lindy Hop which is some sort of dance !!!
Would welcome people's views & thoughts on any of the above. Have you tried any of these things? How have you found them?
Thanks again to you all, it makes such a difference knowing you are there.
Alison
PS Mum had a nice day, we stopped at a National Trust property on the way home for coffee and a scone and then had a walk/push round the garden. Mum can't see very well generally but I chatter away describing it best I can & then all of a sudden the eyes focus and she sees something briefly.
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It sounds as if the visit was very helpful, with good suggestions. Everyone is different but my husband hated the exercises the speech therapist gave him and it was an effort to get him to do them, so personally I didn’t see the point of causing him distress when I knew he would eventually lose his speech whatever exercises he did. If your mum likes doing them though, that’s different. A little tip, don’t do them with her while you are driving. One of them was to take a big breath in and then release it as slowly as you can whilst humming. My husband always let it out in a great big puff while I tried to show him how to do it properly. On one occasion I was doing it so slowly, I thought I was going to pass out at the wheel 😱.
I took my husband to National Trust places regularly (much easier once I got and electric wheelchair for him). Like your mum, he couldn’t see everything so I always took my iPad with me. I’d take photo’s of things, statues, pond fish, architecture, views etc, I was seeing and show them to him on the iPad there and then so he could soak up the atmosphere, sounds, smells etc while looking at the photo. I thought it better than looking at them back home.
When I read Lindy Loop, I immediately had a picture of British women dancing with America Soldiers I’ve seen in war films. Never heard of them for the eyes though.
Take care.
XxxX
Larry has had years of physical and speech therapy which he hardly ever makes use of unless I cue him. By cueing I mean telling him what to do everyday. Having done the therapies he does know what to do but he is rather lazy and would really like to not be bothered because it is tiring. Everything takes enegery for him to do. I sort of have to force the issue and make him use what I know he knows. I am in the “use it or lose it” school. The goal is to keep him mobile and speaking clearly enough for as long as possible. It all comes back to his energy levels which go up and down throughout the day.
Glad you got so much from your neurology visit! Hope it helps.
Am in the "use it or lose it" camp too. Has worked in general for me, until last year when I was faced with nerve pain in my back - and then it didn't work! To recover from nerve pain I had to rest!
So, have changed my tune slightly! If muscles are tired and not working then regular exercise for me, a mere mortal, works and builds up better muscles.
If pain and poor muscle tone is due to nerve damage, then it may not be the best remedy to exercise.
My hubby enjoyed walking and went some distance round the block and up some hills, until it began to be difficult for him. I would here him scuffing along the path when he returned. However, he would not do the prescribed exercises, tho he did join a gym, and much later, was given exercises by a Physio. As the last of his strength was diminishing obviously to him, he began quietly doing heel lifts standing at the sink! And other exercises! But it had little effect on his decline, as CBD was too far advanced.
He also suffered from a painful back down 1 side. Physiotherapy did not help. He found a naturopath who had a different approach. I don't know how it was different as my love went in alone, but he did say it was helpful and went again to her!
So, do the exercises if they help! Walk with your partner if they will let you! Mine walked slowly and I never volunteered to go with him as he was. capable on his own, and I hated walking slowly! Would have been a good time to talk on reflection, but at the time I was just frustrated that he was "getting old faster than me" - or so I thought!
Good that they had a "neuro team" approach: the NPs will take time with you and seem more education oriented. Haven't met a Neuro yet who is! But I always say "OK - as long as you are researching rhe sh_t out of this disease you can leave the bedside manner to the NPs & GPs!"
Keep up the good work, Alison - you're doing great
It was very helpful to see the Senior Nurse Practitioner rather than Neurologist, as you say they can't help but good advise on managing symptoms is much more beneficial. Ben tried with the voice amplifier, the voice exercises but it was such an effort for him that I stopped trying to encourage him to use/practice them. I took over the feeding when it became an issue to get food from plate to mouth. His decline was quite rapid, three and a half years from diagnosis until he died so I guess that makes a difference. In the end I just went with him and did whatever he wanted as I could see the effort to do any kind of exercise was too draining on him. It's strange as he was a very independent man before PSP struck him down, the thought of any kind of help to do with physical assistance would have been unthinkable for him. Amazing how quickly that all changed.
Hi Alison. I looked at Lindy Loops some time ago but they weren't suitable for Valerie. I think they are made by a chap in South Wales. Give the PSPA helpline a call and they can give you more info.
Thanks Bryan - daftly I hadn't thought of that. Have just spoken to them & they are actually called Lundie Loops, so that's hasn't helped my search !!! They will send me some information. Thanks again. Alison
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PROTRUSION OF THE TONGUE
Does anyone know or experienced an esophagus spasm due to PSP?
