My name is Mary and my father in law was diagnosed with Parkinson 10 years ago. He's 85 years old. Until six or seven months ago he had kept this illness at bay by eating healthily, exercising a lot, doing rehab, in a few words, doing everything that might be of help. Unfortunately,in these last 6 o 7 months his conditioned has worsened dramatically: he can barely walk by himself, he can't get dressed or undressed by himself, he has difficulty using knife and fork so many times his wife has to help him, he's terribly rigid, has terrible pain in his neck (his head drops so that his chin is on his chest and now he can't lift his head without help) and he has started "seeing people"(he says he knows they are not real but he sees them) He refuses to have stronger painkillers when he is in terrible pain and what makes matters worse is that he practically doesn't get any sleep at night so he feels terrible and this is also taking its toll on his wife because she doesn't sleep either as he is constantly asking her for help to get up or to turn in bed. Both my parents in law have always been very independent and stubborn people and it is very difficult to get them to listen to any advice. My father in law sees his neurologist from time to time but we have the feeling that this doctor doesn't care. We (my husband and I) think he needs a physical therapist at least three times a week and some doctor who can offer some help to the problem of his not being able to sleep at night as this situation is really terrible. Are we wrong? Is it possible to make things a little better for him in this way or this is it? We are thinking of consulting another specialist to see if he can treat him. There must be something that can be done for him to be a bit more comfortable, I guess...
Welcome to the witching hour. I am still in early stages of Parkies and so I have no practical hints or advice to offer, only a welcome to the site and I am sure there will be others along soon who will be more helpful. Where does your father-in-law live? He does seem to be getting a raw deal from the neuro.
Hello & welcome,
like Mosie I am very early in the PD journey so not able to offer any practical advise, but I do suggest you get your parent in laws GP involved they might be able to get out patient physio organised. As your father in law is seeing people (which must be distressing for him) I think he needs a medication review, does he have a PD nurse?
I am 51 and was only diagnosed in April.
Hello Majito and welcome to the forum. I am sorry to hear that your father in law is having such a bad time with his PD and I'm sure if he were part of my family I would have been banging the drum very loudly for better care for him.
I have been diagnosed for 12 years now and my condition is now worsening by the day. I have access to a PD nurse and I am seen by my neuro about every 6 months. I have quite a number of meds prescribed in order to manage the pain and stiffness and they give me a better quality of life. I also attend physio therapy and I see a speech therapist.
I really do feel that your father in law should be getting a better service, unfortunately it looks like you may have to fight for it!
My advice would be for you and your husband to see your father in laws GP and express your concerns. If that gets you nowhere there is always your local Primary Care Trust and then your local MP. I have recently had cause to take a complaint about my care to my MP and the problem was quickly resolved.
I do hope that this advice is of some help, I'm sure there will be plenty of others that are able to offer more.
Mosie, Bethankit and Glenchass, thank you very much for your replies. Everything you can tell me is of great help. Next week I'm calling a physiotherapist my father in law is very fond of to hire him so that he can go to my father in law's place and work with him (my father in law told me just today that this person offered his help a couple of months ago, which I didn't know... so you see I'm dealing not only with a neuro who doesn't give a damn but also with my parents in law being such difficult people) We've just had lunch with them and my father in law asked to be taken to bed as soon as he finished because he couldn't bear the pain in his neck. I asked him what he was taking for the pain and he said "nothing". The whole situation drives me nuts though I understand that being such a proud person and having been able to deal with PD by himself for so long, it's really difficult to accept that he can't do it anymore. Glenchass, what you tell me about, all the things you do, are undoubtely what he should be doing, I know he could be more confortable independently from the stage of PD he is in. We'll go and talk to his PD doctor and maybe we'll look for a gerontologist for him to have as GP. Thank you all for your advice!
hello Majito and welcome to the forum,
There are a number of things that you may be able to arrange, firstly I would see if both your parents in law will agree to a social worker coming to see them with one of you present, they can arrange to do an assessment on both of them as the carer's/spouse needs have to be considered as well. There are allowance's that they may be entitled to which may help with paying for some home care, If your mother in law is finding cooking difficult because she is so tired than there is a company called Wiltshire Farm Foods which supply meals you can access them on the web and they will bring meals once a week to keep in the freezer which are handy for a standby. The social worker should be able to refer them to an O/therapists who will come and assess them on any aids that may help around the house and several other services which may help ie carer's group, or crossroads who may come and sit with your father in law to give his wife a break, I don't know if they have a lifeline but that can also be arranged through the social worker or o/T.
Of course you may also have a Parkinson's support worker in your area who can help with all manner of things. As to the other problem of the consultant, many area's have a geriatrician with an interest in pd who look at it all in a different light and we have found them very helpful especially for older people.
I don't know if that helps but please if you think of anything else do put it on the forum as someone will know the answers.
my very best wishes
I forgot to say it sounds like your father in law needs a reassessment of his medication as there are tablets for both pain and sleeping that may be suitable but the problem is that they also have to work with the pd drugs and as he is having hallucinations that may be difficult.
best of luck
Vivian, thanks a lot for your post but, we don't live in the UK, we live in Argentina and, to tell you the truth, I'm simply amazed at all the alternatives provided for patients and older people in your country (I suppose it's not perfect either but at least it sounds like help). I wish we had the same situation here. My father in law pays a very expensive health service (a private one because public hospitals here are a disaster - it didn't use to be like that but with the goverments we've had in the last 50 years public health and education have gone to the dogs) but, in spite of that, you have to insist for them to give you what you are paying for, especially in the case of older people. They don't inform older patients about all the benefits they can have so one has to go and make some noise to get a reaction. For example, they are sending a physical therapist but the lady, who is supposed to stay for 30 minutes, takes advantage and leaves after 15 minutes or 20 tops. When my mother in law confronted her she complained about the low wages she gets paid (I almost hit the roof!) So, the only way is to get him private care and pay fortunes. What I needed to know is whether there is medication to make patients more comfortable relieving pain and helping them to have a decent night's sleep, which you have told me is possible, always under a physician's control and care. Definitely his neuro doesn't give a damn about his case. As you say, getting a geriatrician would be great so I'll talk to my mother's doc, who is one.Thanks a lot again!