Rigidity of neck and limbs, any treatment? - PSP Association

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Rigidity of neck and limbs, any treatment?

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Until recently my wife's neck was so stiff that her chin seemed permanently pinned to her chest. Fortunately she had no pain. A weak dose of botox on each side of her neck made no difference but a slightly stronger dose last October, plus a much more structured use of a collar for 2-3 hours a day, has resulted in a marked improvement. Her neurologist is reluctant to increase or even repeat the dose because of the risk of side effects to the swallowing muscles and to my wife's breathing.

Now her arms and legs are becoming increasingly stiff ( incidentally her fingers frequently "lock" onto something with a fearsome grip that I have to prise open as gently as possible). Still fortunately no pain. The neurologist has prescribed Baclofène - we live in South West France, I believe a similar drug is called Lioresal - in a progressively increasing dosage to 9 pills a day, currently half that. He is hoping that this will relieve the rigidity in the limbs and further improve the neck without need to risk the use of botox again. So far, after two weeks, there has been no improvement but no further deterioration either. The possible common side effects of constipation and/or somnolence have not so far materilized.

Does anyone have suggestions for successful treatment of this "spasticity"?

I should add that my wife can still walk, closely supported, for very short distances. Her nourishment is catered for by a PEG each night so she gets all the calories/protein needed to sustain her strength.

"Bon courage" as they say here, to all.

Barnacle.

16 Replies
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Hi Barnacle,

Is your wife on the full dose yet? Mum started taking Baclofen a month or so back. She takes it in a liquid form and was started on the lowest dose. This didn't appear to make much difference so we recently increased the dose and have noticed a slight improvement. If you are not giving the full dose yet, it might take a while to get it right. I hope it works out for you.

H

Hidden
Hidden in reply to hmfsli

Hi, H, thanks for this encouraging response. Presumably you crush the Baclofène tablet and mix it with water; I can't find any pharmacy that supplies it in liquid form here. My wife's current dosage is one and a half 10mg tablets three times a day.

Barnacle

hmfsli
hmfsli in reply to Hidden

Hi Barnacle,

Mum is prescribed a liquid form of Baclofen. Due to difficulties with medication the palliative care nurse recommended that her meds were switched to liquid or patch and, although it took a little while to get it sorted out, Mum now has a patch for Rivastigmine and was prescribed liquid Baclofen. I believe the dose Mum is on at the moment is 5ml in the morning and 10ml at night. I'm not sure how that equates to the tablet form. It is a clear liquid with a pleasant, berry-like smell so I assume it doesn't taste too bad.

H

Hidden
Hidden in reply to hmfsli

I must look up Rivastigmine and try to track down a liquid form of Baclofène. Thank you. I hope the positive signs you have observed continue. All the best, H.

Barnacle

jimandsharynp
jimandsharynp in reply to Hidden

I would think if you check you will find a pharmacy in the area that does compounding. If the do then they can get it to liquid. You might have to call to find one that compounds. We have a Walgreens pharmacy close by but they don't compound. However the walgreens three miles away DOES. Good luck!

Jimbo

Hidden
Hidden in reply to jimandsharynp

Thanks, Jimbo. I'm searching for a compounder.

Barnacle

hello barnicle .

forgive me if i have ajready asked this question but where in sw france are you - we are near limoges

Hidden
Hidden in reply to shasha

Bonjour, Shasha, we are between Toulouse and Pau.

shasha
shasha in reply to Hidden

too far away then to be able to get together ?

Hidden
Hidden in reply to shasha

I'm afraid so.

shasha
shasha in reply to Hidden

i have a first couiisin who lives at Bagneres de bigorre she is younger than me and lost her huband to heart disease last year at the age of 55

jillannf6
jillannf6 in reply to shasha

Hi sha

I am sorry re your cousin s husbsnd n& hope u can meet yup wupith her

shasha
shasha in reply to jillannf6

THANK YOU DEAR JILL - I HAVE NOT SEEN HER FOR A YEAR NOW SINCE BEFORE HER HUSBAND DIED AND they CAME TO MEET UP WITH MY BROTHER AND HIS WIFE WHO WERE STAYING WITH us at THE TIME - SO Sd

shasha
shasha in reply to shasha

SO SAD I MEAN

jillannf6
jillannf6 in reply to shasha

I guessed what u meant

Lol,jiłll

:-)

Botox, muscle relaxers, pain meds, and prayers, if you believe. Kindest regards,

Steve

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