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My dads parkinsons lately...want a bit of support you may remember me as cookiesncream

#1

Hi everyone. i am cookiesncream but i had to create a new profile for you who dont know me my dad has parkinsons and has for 21 years hes now 59 and im 24.

Hes been fairly fine coping and such but then things have gone downhill hes been getting more hallucinations and such in the weeks before this happened. But i saw him walk in such a funny way one day because of how his walk was and he couldnt move he seemed to get stuck in the one position he couldnt get off the floor or anything unlike him totally. And hes been bad ever since. Ibuprofen and paracetamol worked for a time then he went off them started moving again but still in pain and now they arent even helping.

I thought it was a touch of dystonia spoke with the doctor he thinks sprain and now hes injured his other leg but im still worrying we went up accident and emergency the other night after the second call to the ambulance service in a few weeks never done that before they never sent an ambulance the second time but they did the first time. Im worried incase it dont go off even though they say it should get better but it also may be a progression of the parkinsons to they seem to say that more and more now.

They have put a plan in place painkillers physio and see how we go its just so hard at the moment has anyone got any words or wisdom to any of this??

#2

Hi there.

The not being able to move and being 'stuck' to the floor is a symptom of Parkinson's known as 'freezing'.

It is very distressing for the PD patient and others but is quite common and often happens when the medication is wearing off.  There is lots of information on this subject if you look online.  One thing that helps sometimes is to put something on the floor that the person can kick gently to help them walk along.  I hope you can find some information that helps your dad. 

 

#3

If it is freezing singing a tune can help as it starts a rhythm you can keep to also if frozen sand near to something you can hold onto and lean forward it can break the freezing.

as for Dystonia it is unmistakable if you see it or get it. I had it for over a year it is very debilitating and very very painful and depending on which part of the body it affects can twist and contort you into positions you would not think possible. I have in March had DBS and thankfully it has gone. 

Hope this helps and hope hope you have support as you and your dad are young.,I am 52 and had PD nine years now.

all the best to you

#4

Hi, after lots of years on the various medications they just do not work as well, so "freezing" and longer more aggressive "off" periods do become part of the pattern. The more aggressive stiffness during an "off" period makes a person more vulnerable to injury if they do try to shift themselves or if someone else tries to help them. So the physio could be a source of good advice. 

My husband and I spend time finding ways to "trick" his PD symptoms, like others have described above ( kicking a ball, singing or whistling, dancing or walking backwards). For stiffness we find that gentle massage works, not just in the regular way that massage can unknot tense muscles, we think that it triggers a different part of the nervous system and can therefore deactivate the nerves responsible for the spasm. Just the act of interacting, talking about it and trying different things also gives us a way forwards and gives him a constructive focus which calms him down and helps to get him through the fog of anxiety. If your dad is hallucinating then that will be stirring up big emotions of fear, and maybe defensiveness and hopelessness, which is why they have had such an undermining effect on his abilities to cope. If you feel comfortable about doing it you could ask the physio for advice on how you could use touch/massage to ease his physical and psychological pain; we all need physical contact, words alone are not enough.

And I just want to ask you who is around to help and support you? You need others around, whether is friends, volunteers or paid care staff; you can't carry this all on your own. Don't forget your own needs in all this.