Has anyone else in the early stages of PD... - Cure Parkinson's
Has anyone else in the early stages of PD lost interest in many things, my partner is not depressed just can't be bothered, it worries me.?
Yes, its called apathy. Very familiar.
Thank you, I knew what it was called but wondered if others feel the same, he has given up so many of his interests which is a shame as he is quite capable of doing them still. Also it maybe because he feels so tired I suppose with the meds he takes. I'm living with him and have noticed the change in him. He doesn't just sit around, he loves the gardening and his allotment and still does jobs around the house but his hobbies he has stopped and couldn't care less about going anywhere either, very sad......
Apathy, depression and anxiety... a constellation of neuro/psychiatric degradation that can affect some of us. Everyone presents differently, but these non-motor symptoms can be as disabling as the motor. When my dopamine is off I want to jump out of my skin while hiding in the closet.
Thank you for your comments I do appreciate them. I do my best but I worry so much more than he does, he just seems to shut me out quite a lot too, but I realise it's early days yet.
Hi Joycie
Don't despair. My late wife thought that I went into another world, all on my own. I was not aware of this happening, thinking that I was paying attention to what she was saying, but having nothing to add to what she was saying, I just waited for whatever came next. It was not a lack of interest on my part it was a disconnection with what was going on around me.
Only when I was made aware if it and what it was doing to that wonderful person, did I make an effort to respond to what she was saying, even if only with a "Yes"!
My whole family became aware that I did not take part in family discussion, around the dinner table anymore. When I made them aware that I often wanted to put in my oar, but I could not organise my thoughts quick enough to be able to do so, whenever the chance came my way. I had to stick my hand up in the air, whenever this happened, and when one of them saw it they would stop all the others from talking and give me a chance to say my say. In that way, I was brought back into the 'land of the living'!
Get your husband to take part in as many activities as you possibly can, he needs this impetus.
John
By what you have described sounds like my partner, thank you John very much for your comments. He is not interested in doing anything new I'm afraid and only ever seems comfortable and happy when he is in the garden and down on his allotment. We do get away for breaks in our caravan but only because I have booked and even then when he's away he is itching to get home again, he can't relax and neither can I. he tends to forget what it's doing to me, he has changed so much and I miss the times we shared together....
When symptoms become "stronger" and when tablets have worn off, so much of ones time and concentration is taken in coping. For example when my drugs have worn off I get a lot of gait freezing. This takes a large amount of concentration to handle, to avoid falling, which is very likely and being a big bloke I'm rather likely to break something This kind of thing means there isn't much of myself for other things or people.
I suspect this is well orchestrated denial rather than 'just' apathy.
Your partner is happy to potter around out of sight in the home but less willing to venture out anywhere where he might have to acknowledge that he has changing physical abilities and actually looks different from the person he sees himself as being. This is very difficult to live with because you have accepted him for who he is, it's just that he needs to catch up with you.
Denial takes varying lengths of time to overcome but I am sure he will get there eventually. In the meantime you could try several different strategies. Build on what he does enjoy and find something outside the house to entice him out. If it's gardening, go to a nursery or a garden show. Tell him you need his help doing something out of the house. (Make him feel useful still.) Find a support group for yourself where you can talk to other 'carers' and then entice him in. Find local Parkinson's event where he can observe other people with Parkinson's getting on with life. (I'm not sure where you live but the UK is full of them.) Parkinson's UK also has a telephone peer support service for carers and Information Support Workers who can visit you and your partner in your home and support you through these emotional times.
I am sure you will get there and with my husband, time to come to terms with things, a support group with a sense of humour and gentle bullying has worked wonders.
Thank you for all you have said, a great help. He is not the type of person to join groups and refuses to even read or know any details about PD, trouble is I have and know ... I will talk to his PD nurse I think, she is very nice and easy to talk to. It's early days I know, but I do worry about him. He does get very tired as well.... Good luck to you and your husband.
Sincere thanks for your words tonight!
The second paragraph is very meaningful.
My husband has had PD for 17 years. He fits in the apathy category which is better than the other 2 ,being anxiety or depression. He is treated at the Cleveland Clinic and has had 2 brain surgeries there. (DBS) WE are both 61. Sometimes I feel like a cheerleader trying to get him involved in activities and it works! 
He does errands and drives me to work. He is the sweetest man I know. Just let him know how you feel and talk about it. My husband responded very well to coaxing. We work in the yard which is huge unfortunately! LOL Since his voice is so quiet and he is difficult to understand, he tends to be more reluctant to speak at public events with family and friends. I could go on and on but my main point is just love him and things do get better with your encouragement. It's not always easy, but I can't even imagine what he is going through. We do joke around a lot and he loves hugs and all that goes with it!
Thank you, we are both in our sixties too. He took early retirement and that hasn't been easy for him after many years of working and with the disease he was very depressed at the start but was a whole lot more cheerful but recently he lacks interest in so much. No end of encouragement from me helps he just says he can't help how he feels and seems to isolate himself from me quite a lot, I find it so hard.....
Hi kateyamo
About your husband's quiet voice! He is not really aware of what this is doing to him, as well as to others around him. He may feel that it helps others to understand what he is going through! Although it does the exact opposite. Nobody wants to be in the company of someone they can't understand. It is embarrassing.
Ask your husband to shout, as loud as he can, the warning. "FIRE". After he has done this a few times, you will both be astounded with what he is able to achieve. It will make him aware that he is still able to talk loud enough for everybody to hear him, but he has to put a lot more effort into it.
The problem is a very simple one; he is not passing enough air over his vocal chords to make them work properly. He just needs to guide more air in their direction, to achieve his goal.
I don't want to upset anybody here, but I was as guilty as anybody else, for the first two years after diagnosis. I felt very SORRY for myself, feeling as I did, that the world as I knew it, had suddenly come to an end. There was no future left for me! Feeling sorry for ourselves is a natural reaction to what has happened to us. But feeling sorry for ourselves does not help. We first have to accept the fact that we have got Pd, like any blind person has to accept their situation, before they can start to do anything about it. Then we have to do whatever we can to slow down or even delay the progression of the condition. Being a movement disorder, I felt that the more I kept moving the longer it would take to get worse.
I am not a doctor, I have had Pd symptoms since 1963, when I found that I could not throw a ball properly. Had I known then that I had Pd, as a young man of 29, I don't think I would have survived, knowing at that age that I had Pd. At my age now of 78, I am much more resilient. I will battle anything to stay alive and enjoy myself.
Keep active and make the most of everything, especially your family and friends.
I have not needed to take any Pd medication for the past ten years. I am not cured, although I have managed to control most of my symptoms.
John
You are an inspiration John, if only my partner was as positive as you are.
Thank you John, for sharing your experience, strength and hope! You are an inspiration. Do you have a significant other that is supportive also?
There are speech therapy courses, I think sometimes called LSVT - whatever that stands for. These courses, I am told, kind of reset the whispery voice to normal and provide that more normal level of communication for a couple of years or so.
Yes Lee Silverman Voice Technique - google LSVT and click on LSVT.ppt. This gives quite a good idea of what LSVT i all about.
This is a powerpint file so if you don't have powerpoint you will have to just look at other links thereabouts.
I have tremors, stiffness, slowness etc,etc,etc, but I find the hardest thing to deal with is my apathy and lack of energy, even to fight apathy. I try but I feel like I'm always looking through cobwebs and carrying a seventy five backpack. I do force myself to exercise and that helps. I owe it to my wife of thirty eight years to try and so I do but it ain't easy, that is for sure. Keep plugging, encouraging and make sure you get plenty of support for yourself.
Thank God for people like you. Many of us would never get out of bed.
I do try but I don't seem to get anywhere, but I suppose I mustn't give up. He does get very tired which doesn't help. Your wife is marvellous and I'm glad you have her for love and support.
i was fifty when i was diagnosed. (11 years ago). It took me 18th months to get my head round it. I changed the way i dressed , felt sorry for myself, became what I thought someone with PD should act. I was lucky, one day i woke up & realised that life is still good.(Why? I don't know) I am now a tutor on the Expert Patient Courses. These are courses for people with long term conditions the tutors all have long term conditions. I am busier now than I have ever been. yes, i still have moments when "why me" enters my head, but I am a lot happier now.
I know, I'm lucky I have my buddhist fellowship and responsibilities to keep me going. I no longer feel sorry for myself that I can't travel, go to the beach, garden, or play the piano. I no longer want to! I'm ready to give away the piano although I love music. I am ready to embrace my apathy.
That is wonderful , to have your Buddhist fellowship. I wish my husband had a fellowship of some sort that he enjoyed. You sound like you are on the path.
Whatever lifts you up above the haze and cloudiness that is PD...reach for it. Reach for it with passion. Find new found strength to hold on to your dreams...
I have apathy in that iI have lack of motivation to do things that I used to enjoy before..on my recent visit to the neurologist he suggested I increase the seroxat I am taking. I haven't as yet. I don't feel it's a problem with the illness on the outside as my medication is working well. Rather It's the illness preventing the production of certain chemicals on the inside.. I also get very exhausted after a short time and that just makes me give up whatever i am doing or not bother to start anything.
Hi marmaduke123
You have got to know a little about me elsewhere. I can tell you, from first hand experience that when you feel exhausted, and there is no reason for it, then you must persevere and work your way through it. I walk hard, for one hour, every second day. I am now 78 years old and am able to cover four miles in that time. I really don't feel like doing it, but I know what it has done for me, and I will never give in to it.
John
Yes thanks john I will try harder I have realised from reading the above comments that this lack of motivation i feel is common and can be placed under the 'apathy' heading which I've heard about. So now I,ve recognised it for what it is I will get up and do something about it ie get into a routine of walking regularly. Maybe eventually joining a rambling club which I've often thought I'd enjoy. Thanks everyone for your input
My partner walks every day because we have a dog it helps a lot gets him up and out. Joining a rambling club is a good idea if you like mixing with others, something my partner doesn't like to do ( chatting with other people ). We used to walk many miles together 4 miles + but not anymore he gets too tired just short walks is better than none....
in the beginning before i was diagnosed with PD. well i was a wood sculptor for thirty years. all hard woods. and in the meantime i would start a carving, and lose interest. then became very allergic to wood dust. so i changed to carving the close grained soft woods by hand. no more power tools. and i found it relaxing. for the next ten years i carved things that i have been wanting to carve for a long time. and that worked fairly well. but after that period of time i noticed i would start a carving and never finish it. which was very unlike how i do things. and i couldn't understand why the lack of interest, it just started to leave my way of doing things. i would putter around and then go on to something else. and that too was dropped. my interest was no longer there. and this once again was way before i was diagnosed with PD. and most everything that i enjoyed doing i had lost interest in. i think that PD does have something to do with apathy. which is unfortunate.
I am glad i saw all the comments today especailly yours judam9.I have been feeling like that for a long time now i am concerned mainly becuase i have birds which are my babies as i saw them hatch i have on going jobs i started and still hoping to get them finished ONE DAY,like to day i have a small garden to attend to its a lovely day outside so thats no excuse i have tidying up to do CANT BE BOTHERD to do i had a chance to go out in the car with my daughter CANT BE BOTHERD I feel so angry about my feelings being like this i am taking antidepressants, so WHY perhaps the factor is that i am living on my own as i am a WIdow so i have no one with me to give me a push even my family dont give me the help that i so desperatly need OOOOOOOOOOOOOOHH
Hi Barbie18....I sympathise with you as I often can't find the motivation to go out anywhere even for a walk. But if someone called to my door to go for a walk I'd be up like a shot. Why is that?...I do love pottering in the garden though and will do that everyday. You should attend to your garden, it's peaceful, relaxing and you're getting plenty of fresh air. It's up to you to try and change things little by little to shake off those negative feelings. Try to smile more, laugh more and initiate conversations with people. You'll be surprised how better you feel and to the responses you get back. Your family have there own lives to lead with all there own problems I'm sure. Try not let yourself get angry that will only make you feel worse. Instead try and get enjoyment from little things like your birds or your garden and step by step you'll gain satisfaction from that and start to feel better. . Good luck and don't be lonely there are a lovely lot of people on this website...
Hi marmaduke123 thanks so much for answering my comment,i feel that now i have someone to talk to who UNDERSTANDS what i am going through,i have so much to say to you but i dont want to over do it,i have lost contact with my freinds after moving five years ago i am now in a block of flats and everone keeps to themselves apart from the woman upstairs we are great friends but it is not enough i used to go out quite a lot but since losing my partner 6 years ago i have just gone down hill eversince,i have other health problems like we all have but i hate hate what is happeningto me.i think the biggest problem is the lonelyness, i so wish i had a partner to share this with.i hope i have not overloaded you but i feel a bit better now LOVE BARBIE
Barbie18... You are not truly alone if you have one good friend. Cherish that friendship. Go walking together even if its just around the block. Your moving and chatting. May be have little goals together like saving for a trip however small. Or join some kind of association where your circle of friends will grow. The worst thing you can do is sit within your four walls angrily mumbling to yourself. No one can hear you anyway. What a waste!!...no get out in that fresh air and talk to people even if its just to give out about PD. get it of your chest and then start to be more positive. If you just give it a try the smallest of seeds eventually blossom and you will to I'm sure...hope this helps
Hi Barbie18
When my late wife died, after 51 years of marriage, I waited 15 months before I decided to get off my rear-end and do soething about it. I mentally went through a list of widows I know and thought about each one, looking for attributes I liked about them. after one month of searching, I wrote to one lady, who had been at our wedding and was friendly with my late wife. I told her that I was lonely and wanted to do some travelling, but needed a companion. I asked her if she would like to get to know me better with the objective of possibly doing some travelling together. I also said that if we got to like each other we might consider getting married. Her late husband also had Pd for 20 years. She and I have now been living together for the past six months and will be getting married at the end of the year, when we hope that my children will feel happy about my new partner. I know this is not so easy for women to do, but give it some thought.
John
I agree judam9... I too have lost my way of doing things. I was always so organised and tidy. now I can never seem to finish things I just leave them and go onto something else and put things in bags out of the way. My husband finds bags all over the place drives him mad. It's beginning to irritate me as well.
thank you for your replies. it is such an exact switch from what i used to do and how i did them. and have no interest in doing them again, even things that i started and purposefully let them sit , cause i was going to do them when i finished carving in my old age. bobbin lace and oriental brush work etc . and weaving. but none of them interest me anymore. and i've studied each one and even set everything up to do. and i just don't care anymore. thank you PD.
I'm so sorry that you are suffering with this issue... I have tried many times to restart my "old life". I can't, but I do recall Mikey Fox saying in answer to the question " do you consider yourself an optimist?" " I took up Golf and guitar at 40, I'd say that's optimistic". We all go through Ebbing and Flowing, When I am a puddle on the floor incapable of doing what I want to do, I do what I can, so, I took up Golf and Guitar, playing golf well. Guitar, well I'm "playing" but my inability to play a song bothers me. We lose a little every day but we also can do more than we think we can. I won't wake up one day and be Superman, but I won't be pushed into decay. I love the scene in Lord of the Rings, when Gandalf and the crew free the king Theodan
from his "disease"
Grima and King Theoden - Two Towers.png
How do you motivate a "broken" man or woman? You can't get in the drivers' seat, I would say be kind and don't attach too much to his/her apathy...
I make a list of goals that I want to accomplish each week and try to complete as many as possible. The goals can be simple such as washing the floors or as complex as painting a closet or going shopping. Some days I have to break a goal into small parts such as buying the paint or filling in small holes. I never know each day how I will feel but to me it feels good just to cross off something on my list. It makes me feel like I can still do things. The goals sometimes never get finished(lots of them) but I pat myself on the back for trying and making an effort. I don't do a lot of what I used to, but my abilities and interests have changed since my diagnosis. The other day I finished planting a flower garden and I found myself saying that I should have planted all of the gardens in the time it took to complete the one I did. My husband stopped me and said, " But hon, you DID this one, so be happy". So be proud of what you or your partner with PD can do and encourage him or her and maybe that will be the motivation to do more. I know motivation comes from within but a pat on the back or a word of encouragement can't hurt and may help.
joycie,
I expect your husband is feeling bereft, mourning the permanent loss of his full health. Like any bereavement he will need time to adjust.
Oh and I just noticed he is retired too. That in itself makes many men (I expect women too) feel bereft as there is so much loss around the age of retirement; loss of status, loss of companionship, reduced income, no routine imposed by the job. Even if you are chuffed to bits to be retiring these things still constitute loss of one sort or another. It sounds like he is keeping himself occupied at least which is especially good.
You are right Pete, we have both had to adapt to his retirement, he took early retirement at aged 62, he'd worked at the same job since he left school so it was a big upheaval. He is definitely keeping busy, too much he gets so tired by the end of the day and then he can't sleep due to his terrible restless legs. He's on meds for that but they don't always work I'm afraid. But he does have good nights in between thankfully.
Thanks Pete he is on Requip at the moment now has to wait for his blood test results to see what is next.
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