Hi my husband (52)(thinks had it for at least 10 years) was diagnosed in april, dat scan done end may which confirmed it. He only has a couple of small symptoms, stiffness, dreams, very slight tremor in hand when tired but not all the time, but can be very slow put shoes on etc. Which brought this to our attention. He works away, uses gym when away and when home he goes to gym everyday and still plays 5 aside twice a week. My frustration is he is so angry (as his confidence) has taken a dive, but just seems so bitter which is out of character as he was always a confident happy go lucky person. Keeps asking specialist nurse and docs how long he will be able to work, but will not accept that they don't know. They do think it is slow progression because of the amount of time they think he has had it and how little progression there has been. He doesn't seem to take in the positives which I read out to him, he only grasps the negatives. He isn't on medication just yet but considering it as he feel quite stiff and sore alot of the time. He had a slight ocd side to him before with certain things, but now it is 10 times worse, and once he gets hold of a subject he is like a dog with a bone won't let go and goes on and on and on. I'm only 48 and finding this quite difficult as well and am at wits end with what to do. He keeps saying I will find someone else, why would I want to stay with him etc etc. To be honest when he is away working, even though I still worry about him, I feel relief as I haven't got him getting on at me constantly. Is this normal, or am I being a bitch and not understanding him properly. I have read everything there is, am reading MJF books, I've read up on meds I'm doing everything I can to equip myself, but just don't know where to turn to next. Is there anyone in my situation around my age that could give some advise, as this would be much appreciated. Thanks
Hi My Life,
Welcome to the forum. If you go to the thread "Age and Date of Diagnosis" you will find about 10 people who were diagnosed in their late 40's /early 50's. You can perhaps look at and search for articles by these people with interest.
Your husband's diagnosis is still fresh so it's understandable he is like he is. I wouldn't say you are being a *****. It's your response at this point in time to a loved one having a chronic and degenerative illness. Once you are sorted on the right combo of meds you will have one less problem on your shoulders.
Get a good neuro who specialises in movement disorders (preferably) and see how many questions he can answer to you and your husbands satisfaction. Read a lot about MAO's and DA's as I doubt your husband will be advised to go onto the Levodopa-based meds at this stage.
Good luck with it all,
rico
Welcome to the forum. If you go to the thread "Age and Date of Diagnosis" you will find about 10 people who were diagnosed in their late 40's /early 50's. You can perhaps look at and search for articles by these people with interest.
Your husband's diagnosis is still fresh so it's understandable he is like he is. I wouldn't say you are being a *****. It's your response at this point in time to a loved one having a chronic and degenerative illness. Once you are sorted on the right combo of meds you will have one less problem on your shoulders.
Get a good neuro who specialises in movement disorders (preferably) and see how many questions he can answer to you and your husbands satisfaction. Read a lot about MAO's and DA's as I doubt your husband will be advised to go onto the Levodopa-based meds at this stage.
Good luck with it all,
rico
Hello My Life
I have PD and was diagnosed at the age of 48. I knew for a while something was wrong. Having been a very active person ie Gym 3 times a week also jogging regular. This came as a shock to me. It took me ages to come to terms with this.First thought was my life is over, I have lost confidence, feel insecure in my relationship, think people are watching me when I am out because I have a tremor. (the list goes on)
Your husband is trying to come to terms with his PD. And sadly we do tend to take it out of the people we love. He will have so many things going on his head, how will he manage to provide for his family, will you still love him , once again there are many issues going on! We don't ever really come to terms with it but we do have to except that it's here to stay.
He will get over his anger once he deals with the negative thoughts. I am just trying to explain what I believe he is feeling. A terrible time for you also, please try to be strong and calm.
I am into my 5th year of this and still working. I take each day at a time, try to live each day as it's my last. As for the future, well never look that far.
The forum has lots of great people here who I feel with give you good advice and support.
ALL the very best to you, wish I could give you a hug..
regards PB x
I have PD and was diagnosed at the age of 48. I knew for a while something was wrong. Having been a very active person ie Gym 3 times a week also jogging regular. This came as a shock to me. It took me ages to come to terms with this.First thought was my life is over, I have lost confidence, feel insecure in my relationship, think people are watching me when I am out because I have a tremor. (the list goes on)
Your husband is trying to come to terms with his PD. And sadly we do tend to take it out of the people we love. He will have so many things going on his head, how will he manage to provide for his family, will you still love him , once again there are many issues going on! We don't ever really come to terms with it but we do have to except that it's here to stay.
He will get over his anger once he deals with the negative thoughts. I am just trying to explain what I believe he is feeling. A terrible time for you also, please try to be strong and calm.
I am into my 5th year of this and still working. I take each day at a time, try to live each day as it's my last. As for the future, well never look that far.
The forum has lots of great people here who I feel with give you good advice and support.
ALL the very best to you, wish I could give you a hug..
regards PB x
My Life:
Hello and a warm welcome to the forum My Life. I think most of us who have pd would understand what your hubby is going through, I'm afraid it is a process that he needs to work through. Just give him lots of support and ensure that you take some time out to be together. I have been diagnosed for nearly 11 years and I only took early retirement 4 years ago due to the pd.
It can be a very slow progression and worrying about it only leads to stress and stress and pd do not go together very well. Perhaps you could show your hubby this forum, he too might benefit from chatting to others who understand his feelings and emotions at this time in his condition.
Chin up both of you, please keep us informed...it would be nice to chat to your hubby at some time too.
regards
Ray of sunshine:
Nice to see you back Ray, hope things have settled down for you at home.
Glenchass
Hello and a warm welcome to the forum My Life. I think most of us who have pd would understand what your hubby is going through, I'm afraid it is a process that he needs to work through. Just give him lots of support and ensure that you take some time out to be together. I have been diagnosed for nearly 11 years and I only took early retirement 4 years ago due to the pd.
It can be a very slow progression and worrying about it only leads to stress and stress and pd do not go together very well. Perhaps you could show your hubby this forum, he too might benefit from chatting to others who understand his feelings and emotions at this time in his condition.
Chin up both of you, please keep us informed...it would be nice to chat to your hubby at some time too.
regards
Ray of sunshine:
Nice to see you back Ray, hope things have settled down for you at home.
Glenchass
Thank you guys so much its a help talking and getting info from others. My husband has been offered RequipXL to take but he is still contemplating as doesn't know whether to start meds now or not. We were told its a slow release drug and doesn't seem to have many side effects. The only prob he seems to have is the stiffness in upper body. He is worried that taking meds will take him down the slippery slope. So we not sure what to do....... Anyone know anything about this drug.
Hi again My Life
I am on ReQuip XL and found it has helped with my mobility. Before taking this medication I could not walk very well and had alot of muscle pain.
However before your hubby decides to take medication I certainly would advise doing some research on them first. So you know what the side effects are with these drugs
It might take a while to find the right medication as we respond differently to certain meds. What suits one does not always suit another
Regards PB
I am on ReQuip XL and found it has helped with my mobility. Before taking this medication I could not walk very well and had alot of muscle pain.
However before your hubby decides to take medication I certainly would advise doing some research on them first. So you know what the side effects are with these drugs
It might take a while to find the right medication as we respond differently to certain meds. What suits one does not always suit another
Regards PB
Hi mylife, it might be worth remembering that all the drugs that are available to treat pd are very potent and should never be taken lightly. Requip i part of a group of drugs which are well known for causing side effects, some serious and some not so serious. Personally and with 11 years of pd hindsight, I would always put off taking any of the drugs unless I really had to. Only your hubby knows how severe his symptoms are and how much they affect his daily life...all these things should be considered very carefully before embarking on the long and windy drugs road that pd medication is. If he does decide to he really needs the drugs, please ensure that you find out as much as you can before taking them.
I hope that you both are able to come to an informed decision, please keep us updated.
Glenchass
I hope that you both are able to come to an informed decision, please keep us updated.
Glenchass
Thanks posh bird you have just described my husband to a tea.... Yes I do understand what you are saying he is going through so many emotions, thinking people are staring but they don't even know. I think the worst thought he has is not being able to pay the mortgage and provide for us. but the kids are grown and its just the two of us. I say we can always sell the house and get a smaller one to pay off the mortgage. But he doesn't think like that. He wants to earn as much money just now without spending incase of we need it for the future. My attitude is live for today because none of us know what the future holds. But I guess that is just the independent provider in him and he is still dealing with his emotions. Hopefully with the positive attitude and going to gym and playing football he will work on as long as possible. I think i'm finding it harder at times because I'm bearing the brunt of alot of things, am I walking, talking ok look ok etc. All i can do is reassure but at present the pressure just seems so great I just cry myself to sleep at night... But compared to what my husband is going through this is nothing. So the attitude now is lets live it to the fullest with our daughter getting married next year something to focus on, at least I thought as all he keeps going on about is the money it is costing which he never worried about before. Thanks glengass for your advice on drugs. I was actually told by a friend who has MS for him to stay off the drugs if he can for as long as poss... My apologies to all for the rambling, but you all being here has helped to vent my frustration and thoughts....
Hello My Life i have been on Requip XL for 10 days now i was very reluctant to start meds but after a lot of thought i went for it , i find it good to be able to peg washing on the line again, at the moment i have not had any side effects up to now . I have found it so nice to be ale to peg my washing out agsin, i am 65 and work 20 hours a week. Take care Chris
Hi MY Life sorry about the garbled message before but hope you know what i meant Chris
Hi My Life
Oh, how I feel for you. My husband was diagnosed four years ago and I now care for him full time (he is much older than your husband and I think had actually had PD for many years before diagnosis), so in that respect my situation is different to yours. As far as the supporting role goes though it is not different. You have to remember that your feelings are as important as your husband’s in all this. You may not be able to vent your frustrations to him but you have to let it out somehow. Also you must try and make time for yourself, if you crack up you will be no use to your husband. I find that meeting a friend for coffee and talking about anything but PD or going for a walk, or even reading a book in the day (that seems like real indulgence) help to distance me from the problems. I cry as well sometimes – but not as often as I laugh.
Oh dear, that does sound cheesy but its true.
Thinking of you lots
Take care
Worrals
Oh, how I feel for you. My husband was diagnosed four years ago and I now care for him full time (he is much older than your husband and I think had actually had PD for many years before diagnosis), so in that respect my situation is different to yours. As far as the supporting role goes though it is not different. You have to remember that your feelings are as important as your husband’s in all this. You may not be able to vent your frustrations to him but you have to let it out somehow. Also you must try and make time for yourself, if you crack up you will be no use to your husband. I find that meeting a friend for coffee and talking about anything but PD or going for a walk, or even reading a book in the day (that seems like real indulgence) help to distance me from the problems. I cry as well sometimes – but not as often as I laugh.
Oh dear, that does sound cheesy but its true. Thinking of you lots
Take care
Worrals
Thanks Chris46, I'm so glad the meds have worked for you. Its good to hear as well as being able to peg out your washing and type you are still working, that is so inspirational to hear thank you so much. Worrals it was great to hear from someone who is a partner as you know what I am going through. As well as working 30hrs a week I also do cake decorating as a hobby but am still quite busy,as well as going to the gym. so this takes my mind of things as I need to concentrate. My husband works away for 2 weeks at a time and although I still worry about him away it does give me some respite. Physically there isn't that much wrong apart from the stiffness and occasional aches and pains, he does go to gym everyday home and away and plays football up to 3 times a week when home. The thing I find hard to deal with is once he gets hold of a subject he just doesn't let go he goes on and on and on. Thats hard and I don't know if this is down to pd or his age to be honest or being a man lol
Our daughter is getting married next year and for once I done the right thing and put money away so we could pay for it. But since my husband has been diagnosed he goes on and on about how that money would do us in the future etc etc I am finding it hard dealing with this and he just won't let up. He is making me ill and its hard because I know I have to be stay strong for him. Any advice would be so much appreciated. thanks again for listening (well reading lol) xx
Our daughter is getting married next year and for once I done the right thing and put money away so we could pay for it. But since my husband has been diagnosed he goes on and on about how that money would do us in the future etc etc I am finding it hard dealing with this and he just won't let up. He is making me ill and its hard because I know I have to be stay strong for him. Any advice would be so much appreciated. thanks again for listening (well reading lol) xx
I think even if you have an idea that you might have Parkinsons when you are first diagnosed it is like someonepunching you in the stomach it is a shock to the system . It can take a few years before you accept the situation partly because it is something new that you know about or understand .
Many years before my husbands diagnosis I used to tell him he was never happy unless he had something to worry about lol.
It's not funny because their heads become scrambled with all the problems and then they end up in your head as well .. That's on top of the ones you already have .
I started to get him to write everything down and then delete them once solved , even now to writing down the times of medication .. Probably it's because they are afraid things will get out of their control. or the mext doctors appointment .
Read as much as you can about Parkinsons I google the every problem that arises don't know how I would have managed without it . I also talk chat on line to as many others who suffer or care care for someone with Parkinsons .. It works for me . My husband is now 77 and I am 74 .
It would get that bad he would start to cry then I would get him to think about a more pleasant subject or even start singing a silly song anything to distract .
As a carer /wife/husband/partner whatever you learn to wear a lot of different hats and find new ways to get round things
Many years before my husbands diagnosis I used to tell him he was never happy unless he had something to worry about lol.
It's not funny because their heads become scrambled with all the problems and then they end up in your head as well .. That's on top of the ones you already have .
I started to get him to write everything down and then delete them once solved , even now to writing down the times of medication .. Probably it's because they are afraid things will get out of their control. or the mext doctors appointment .
Read as much as you can about Parkinsons I google the every problem that arises don't know how I would have managed without it . I also talk chat on line to as many others who suffer or care care for someone with Parkinsons .. It works for me . My husband is now 77 and I am 74 .
It would get that bad he would start to cry then I would get him to think about a more pleasant subject or even start singing a silly song anything to distract .
As a carer /wife/husband/partner whatever you learn to wear a lot of different hats and find new ways to get round things
Is there anyone who has been diagnosed in their late forties early fifties and are still working 5-10 years down the line.... It would be so helpful if my husband could see that there is hope. He was always the who thought positively but at the moment understandably he can't. If he could see that there is people still working for a longish time after diagnosis then this would be so helpful. thanks
Hi MyLife,
There is a book about John Ball, longtime PDer, called Living Well Running Hard. You can order it from amazon.com. Haven't read it yet but intend to, just google his name and you'll find inspirational story about him. Began marathon running after dx'ed. Also, try googling the WobblyWilliams site. Founder's story, Bren Williams?, might inspire too. I'm newly correctly dx'ed, but symptoms started about 8 years ago. I exercise a lot and capable of working. Recently lost my job due to poor USA economy, not PD. Bright side is spent summer with daughter before school starts up again. Oh, am 47 yr old mom/wife. Take care, Lin2
There is a book about John Ball, longtime PDer, called Living Well Running Hard. You can order it from amazon.com. Haven't read it yet but intend to, just google his name and you'll find inspirational story about him. Began marathon running after dx'ed. Also, try googling the WobblyWilliams site. Founder's story, Bren Williams?, might inspire too. I'm newly correctly dx'ed, but symptoms started about 8 years ago. I exercise a lot and capable of working. Recently lost my job due to poor USA economy, not PD. Bright side is spent summer with daughter before school starts up again. Oh, am 47 yr old mom/wife. Take care, Lin2
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He has got to do it himself - to make- good life from this moment has to come from himself - can go two ways but i understand you at wits end - i would like to meet him - parkinsons sometimes we need to sort out where we are in life - take stock , like a mid-life crisis , he might need to get back to just being - raw & basic - not always possible to soothe the un-soothable but by doing. What you are doing - that is great backing
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hi mylife, i was diagnosed 8yrs ago i was 43 and 8 yrs later i am still working doing the same hours i was 8yrs ago, i have dipped slightly but i can still do most of the things i did then, i did,nt take any meds for the first 4yrs but eventually had to give in and take them, your husband was only diagnosed in april so he will still be trying to accept it, might be a while so just give him time all you can do is be there on the dark days and the good days and there will be good days, and if the consultant thinks he may have had it 10yrs and its slow progression then thats something its not all doom and gloom having a posative attitude really does help, he will learn to adapt to it because at the end of the day its not going away i am sorry if that sounds abrupt its not meant to but its a fact and us pwp,s have to accept it untill they come up with a cure hopefully that wont be long fingers crossed, please tell him to keep his chin up its not all bad and keep going thats what the drugs are for and he will still be able to work with a little tweaking from time to time of his meds give him time and he needs to give himself time and hopefully things will get better good luck sue.
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Hi My life
Read your posts with interest , my o/h was diagnosed at 43 the only initial symptom he had was a 'trapped nerve' or so he thought , made him go to docs and sadly 1 month later dx with PD. He was put on meds striaght away no discussion back then ( 10 years) he worked in a very stressful job with loads of travelling only minimal problems for 5 years. few more for following 2 years and then crisis and had to finish.
Everyone is different as you have probably gathered which does not help and as you have mentioned your o/h may have had PD around for 10 years. that maybe a good sign We have been told that o/h appears to have aggressive form and has now got other health issues.
It's not easy but you have to try and not look to far ahead and hop as others that your o/h continues to be able to work and enjoy all the quality of life that he has now.
Take care of yourself as well
bubble x
Read your posts with interest , my o/h was diagnosed at 43 the only initial symptom he had was a 'trapped nerve' or so he thought , made him go to docs and sadly 1 month later dx with PD. He was put on meds striaght away no discussion back then ( 10 years) he worked in a very stressful job with loads of travelling only minimal problems for 5 years. few more for following 2 years and then crisis and had to finish.
Everyone is different as you have probably gathered which does not help and as you have mentioned your o/h may have had PD around for 10 years. that maybe a good sign We have been told that o/h appears to have aggressive form and has now got other health issues.
It's not easy but you have to try and not look to far ahead and hop as others that your o/h continues to be able to work and enjoy all the quality of life that he has now.
Take care of yourself as well
bubble x
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Well everyone here we are 11 years down the road. I hope you are all getting on fine😘My Hubby had to medically retire 3/4 years ago. He was an engineer offshore & they tried everything to get rid of him except he kept passing all the tests they put him through, even his survival in & out of a helicopter etc he did it all. About the start of 2018 he said the the work doctors, if they could write a recommendation to retire as he had, had enough, he received nothing for 17 years loyalty, but we are doing ok… skip fwd & he was supposed to have the DBS operation in April 20, well we all know what happened that year, it was put off two more times that year. He finally had the OP in Feb 21 & to say it made a difference is an understatement… very little tremours, we can go out for dinner & i dont have to help cut his food anymore… He has cut down slightly on sinemet but as he only takes 2 tabs 4 times daily, if he feels he does need a boost there is still plenty if scope to add another 1 or 2… he is still on 6mg of Ropinerole & his SR sinemet at night… i do feel he is back to acting out dreams again & ive resorted to sleeping in spare room as I am still working… he overthinks things & certain subjects he is like a dog with a bone, i hear the same subject 24/7 which can get difficult as he doesnt see that he is harrassing for want of a better word & there is the lack of empathy as he sees he is the one with the condition so its him who is suffering…
However, on the upside, he has put on weight (cld do with losing a cple pounds😀) but as he has the probes & wires from dbs had to give it up… He looks better for it, i have to admit, he walks so much better & just slight tremors so on the whole he was the perfect candidate for the operation & his case was successful…
Please take care & look after yourselves & loved ones❤️xx
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