Help with rigidity and severe stiffness problems. Any advice?

My husband was diagnosed with PSP very early in 2008.At the moment we are having severe problems with upper body rigidity. Head and neck are very extended most of the time and getting him seated is like trying to sit a plank of wood.We are trying to alter some medication to see if that will help.

Does anyone have these problems? Any advice welcome.

20 Replies

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  • hi,

    Since i was told i had CBD ive had problems with my

    neck shoulders and legs being stiff and sore , they

    tryed changeing my meds but it didnt have no affect

    they also decided to send me to my local hospital to

    have hydrothearpy the hot water stops the stiffness

    and relaxes the muscles, i also go for holistic therapy

    called emotional freedom technique and that works

    a treat it gets rid of all the stiffness and the stress

    which when you get stressed you get tence which

    makes you go rigid,

  • Hello Ray,

    My mum has Psp.

    I have a pair of mule slippers taht have batteries in then and i slide them either side of mums back also another item on her neck , then when i turn them on they vibrate and that helps mum to relax.

    I get the baby size hot water bottle and put that on my own neck, back etc.

    Also Alovera heat cream and Bio Freeze are very good.

    Hope you find this some help. Plus get someone to just gently massage your shoulder's. Valerie xxx

  • hi valerie,

    hope your keeping well thanks for the information,

    i have got a electric seat that you can put in your

    chair and it heats up and vibrates i will try that as

    well and see what happens thanks for your help

    take care

    ray

  • hi ray

    reading your blog reminded me that i too have an electric chair which soothes backand neck problems - consigned to the back stairs

    so thanks for reminding me of it- i shall use it now

    jill

  • Hi Ray Many thanks for your reply.We live somewhat in the sticks in Cornwall and hydrotherapy pools are some distance but I will certainly look into EFT.We can only keep trying !

    All good wishes

  • Hi,

    There are several options you could discuss with your GP or neurologist. One is a drug called Baclofen which helps to reduce muscle tone and the other option might be Botox injections.

    Both have pros and cons so make sure you understand them before you decide to go ahead.

    With Baclofen you may need to play with the dosage a bit to get the right level. too little = no effect, too much = very sleepy person!!

    With Botox - only lasts 3-4 months before it needs repeating. Also national guidelines state it should be administered under EMG guidance (i.e a sort of xray to ensure you are targeting the correct muscle groups). GPs should not really be administering it in their surgery, so it might involve a trip to a specialist.

    Hope that helps a bit

    Kathy

  • Hi Kathy, many thanks for your reply.Falls have now been reduced as it's now too risky to wak with my husband even with a walker.He can stand to transfer but his balance is dreadful. He tried Baclofen and became so 'out of it ' that I needed to call an ambulance!

    We are in the process of consulting our GP re trying Clonazepan at the suggestion of our PSP nurse. All these things take time however.

    All good wishes

  • Mum is on Clonazepan. She was prescribed it for nightmares and hallucinations, so I think it also has a slight sedative effect. Hope it works for your husband's rigidity! we don't have too much of a problem with that for Mum at the moment (thankfully!)

    good luck

    keep us posted!

    Kathy x

  • This is so much of the illness itself and is progressive. Because of the rigidity, he may be more prone to falls. If you have not done so, a meeting with a hospice team or the neurologist may be able to prescribe both a physical therapist, and a occupational therapist to approach two fronts. Continued mobility and exercises you can help him do at home, and the safety precautions. My Mom was able to ambulate long into the illness. Her balance however was severely compromised due to the stiffness of her neck, and her eyes themselves. If she tried to look up her whole frame would adjust up and she could easily fall over backward. A walker kept her balance forward....Good luck...Kathy

  • Also regular exercising really helps. you or someone else would need to help him do all kinds of stretching and movement exercising.that really helped my dad.

  • Hi ashav We do try to keep exercising but unless I remind him it will not get done. I find that with this illnes everyday things have to be constantly reinforced.

    All good wishes

  • My husband is also very stiff like you its like trying to bend a plank. however we do have another problem when we assist him walking he lands up on his toes like a ballet dancer and trying to get him back on his heels and move his legs which then seem to freeze. He is not on any medication right now, he was on sinimet but it was no use, these days we seem to be left to our own devices and I find it very frustrating, even the specialist doesn't want to see him on a regular basis he has told us to get in touch with the parkinsons nurse if we have any worries

  • Hi Shelagh, We have now stopped walking far even with a walker as his balance is too bad and he is a very tall man which makes it more risky to keep him upright.We were on a highish dose of Madopar which gave rise to dreadful constant movement (dyskinesia) but now we've reduced the dose it is better but the stiffness and rigidity is so much worse. I agree we are left to our own devices by the specialist but I do find the Parkinsons nurses very helpful and we also have a brilliant physio. Do you have a hospital bed for your husband. Our community matron got one for us and it is very helpful as it has so many functions (raise and lower etc)

    all good wishes

  • We have tried a counting strategy, or right- left-right. I count and he moves at will. He can not do this well by himself but when he is freezing I can sometimes get him out of it.

  • It is a good idea to get in touch with your Parkinsons Nurse, if you have, one as they will be able to see if there are any medications that will help in terms of movement. If the Levodopa drugs have been tried and stopped there are other drugs that can be cosidered but each person is individual and needs individual assessment. As the condition progresses rigidity can become more of a problem and it takes a team approach (physio, OT, GP nurse ++) to address these kind of issues. If you dont have a Parkinsons nurse phone your PSP specialist nurse (see pspeur.org) they are happy to talk things through with you and put you in contact with the local Parkinsons nurse (if your area is not covered there maybe a neuro nurse or Community Maton)

  • Hi PSPA_JillL We are in touch with Parkinson's Nurse,Physio,OT,GP and speech therapist also community matron.We are in the process of seeing if it might help changing medication to help with rigidity.These things however all take time. Lets hope we get some relief.

    all good wishes

  • HI,

    yes we had that problem with my dad too. so we actually hired someone who would be with morning to evening and help him not just with his chores (because it does get difficult to do regular things as eating , bathing and even walking to the loo), but also ensure he helps him do the exercises twice a day and go for a walk twice a day. ofcourse he could walk only a little with help.

    Another thing what helps is yoga. if you cant get a yoga teacher , there are yoga DVD's available which show exercises for parkinsons. those are very helpful too.

  • hi

    i find tai chi good for ballance and slowign down (i am very restless and find it difficult to concentrate on anything for very long)

    and am takinn amantadine 200mg ( fallling less)

    freezing is the worst aspect of rigidity 4 rme at present -going down a slope however small is very difficult

    exercises are very helpful - i tend not to do them unless prompted though

    love jill

  • Mt husband was prescribed Sinemet to improve mobility but ater a month the change was negligible. The neurologist recommended increasing the doseage but the letter to the GP took 8 weeks to reach the surgery despite twice weekly prompts from me. So much has happened in the intervening time, mostly to do with mobility, that I could scream. Every fall seems to reduce his physical and cognitive capability. 8 weeks ago he could walk in the house unaided now he can hardly stand up alone.

  • We do use Parkinson's medications (Levodopa) and/or muscle relaxants such as baclofen or clonazepam for rigidity, but it can take up to 3 months to see any benefit. All medications have side effects and with these it can be daytime drowsiness, so it is very much trial and error to see what suits an individual. Most Neurologists will offer a botox clinic which can be beneficial for some people. Do discuss the options with your specialist.

    MSAT Nurse.

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