Leg arched back, lower jaw withdrawn

[sammy90210]

Hi

My dad is suffering from advanced dementia / PSP and has a PEG tube now

He lies in bed all day and has a hard time sitting up also

His back is arched now - he neck also arches back and is very stiff

His lower jaw is also getting withdrawn so much that the upper jaw seems to be protruding out

Has anyone else seen this too? And does the withdrawn jaw or arched neck cause problems?

Thanks

- Sami

[elizalou1710]

Hi Sam my mum is at same stage but slightly different her arms head and neck are worst affected by contractures she has baclofen physio twice a week and deep tissue massage all of which help a bit , she is going to have Botox injected into her elbows next month ! My thoughts are with you coping with this terrible illness x

[sammy90210 in reply to elizalou1710]

Thank you my dad doesn't let anyone touch him - I try to massage him quickly whenever I can

Best wishes for you as well

[easterncedar in reply to sammy90210]

I was going to ask whether his doctor has considered baclofen or something like it to release the muscles. It sounds painful as can be, and it must be awful for you, Sammy, to see your father in such a state. He is fortunate in having you for a son, however else he has been mistreated by fate. Hang on! Easterncedar

[sammy90210 in reply to easterncedar]

Hi easterncedar

I will check for baclofen from his doctor .- he used to take stemitil before but it used to give him terrible lef cramps and agitated him severely so the doctor stopped

I will visit him again with an update (most doctors specially specialists don't do home visits in Pakistan and there is no proper home-care system here) with a video of dad and ask for new medication - if he requires I would take him in an ambulance but given his condition it's quite stressful for him to move

Thank you for your kind words - yes, seeing the distress in his eyes sometimes is quite difficult

[easterncedar in reply to sammy90210]

What a good idea to take a video. No one does home visits here in the US either, so I think that's an idea folks might take up. I hope you can find something that helps your father. Do let us know how it goes. Sending you best wishes, love and peace, Easterncedar

[sammy90210 in reply to easterncedar]

Sure, I will update - thank you for your kind wishes - all the best for you and your loved ones too

[fothergilla in reply to elizalou1710]

Can I ask what baclofen physio is? Is this something other than taking baclofen orally?

[sammy90210 in reply to fothergilla]

Hi - this is from a while ago but I assume it was just about taking baclofen orally - btw, I made a mistake - the medicine is not "stemitil" but "sinemet"

[Hidden]

Look into CBD oil. It's made from cannabis but is a non psychoactive cannabinoid.

Ppl use it to treat rigidity/mobility issues in parkinsons effectively. Although it will only last a few hrs.

When my dad gets to the stage your dad is at i plan to use cbd ointments too.

Cbd oil is legal in the UK, but try to get cannabis based cbd oil and not hemp based.

A man who suffers from psychosis recommended cbdbrothers.com to me. He uses it successfully to treat his psychosis.

This vid shows how a Parkinsons sufferer walking after and before treatment.

youtu.be/czvoz4d3tlY(Not working as expected?)

[sammy90210 in reply to Hidden]

Thank you very much!!! Will definitely check it out

[jzygirl]

I think with the neck getting stiff it does pull the bottom jaw back a bit. When i look at Brian i can see his neck muscles are very prominent where they are tight and constricting which will pull the bottom jaw backwards. No problem as yet. Janexx

[sammy90210 in reply to jzygirl]

OK thanks

My dad's neck is so arched I have to out an extra pillow just to make sure it's a bit straight

When he walks, with help, his back also starts arching back so I agree, it could be the neck muscles pulling back the jaw - will check with his neurologist as well

[jzygirl in reply to sammy90210]

Brian hunches foward and his right shoulder is curved foward and up. Right arm is nearly locked bent we can get it to 45% but that is all the movement he has in it. Because of the lack of use/movement the muscles have shortened and that is where you get joints very stiff. The trouble is one stiff and shortened muscle causes another one to siese so it's an ongoing problem. As everyone is different its hard to know what is the psp and what is just another problem. Janexx

[sammy90210]

Thanks you for the information - my dad keeps his arms together often, I think it hurts him to spread them out - I sometimes gently ask him to spread them and he complies - he won't open his hands though - my sister tried to open it and massge his fingers and he got really angry and tried to push her away - so I guess it hurts him