Hello from a concerned wife


#1

Hi there,

I am the wife of a very private ( in denial) 50 year old man. We have just started our emotional roller coaster. Hubby has not yet been officially diagnosed, as he is reluctant to talk about his symptoms ( head in sand I’m afraid)
We have been having tremors in the right hand and leg almost daily for approx 20 months, They last approx 5 minutes, starting unexpectedly and ending ubruptley , we have also had full body shakes probably twice a month.
Hubby does occasionally get a tightness across his chest , where his Bp and pulse, understandably go very high and he has been known to hyperventilate and pass out.
Hubby is thAnkfully incredibly fit but will not discuss his problems with any one.
We have an appointment tomorrow, and I have actually filmed a small amount of his tremors, he is unaware as he thinks , I have deleted it.
I am just great full to have found this forum.
Thankyou x


#2

This sounds like my OH who refused to admit for at least three years that there was anything wrong. The shaking, inability to get out of a chair or turn over in bed without help, difficulty in swallowing, difficulty walking was all due to age (around 82 at the time) He insisted nothing would help him even when I said I was sure he had parkinsons. I just kept hoping he would see sense but it took a very bad urinary infection for him to call the doctor and I was flabbergasted when he said to her that he thought he had other problems and possible parkinsons. She was not surprised and began to put help in motion, I know what you are going through and I do hope your OH realizes all is not well and he can be helped. Good Luck!


#3

Hi,
I feel for you in this situation but Ithink your husband is scared of the loss of control. I found that accepting the diagnosis and finding ways to live with it takes time but when you do it helps everyone.
It effects the whole family and when the person with PD accepts and starts fighting, it makes life with PD a little more bearable.


#4

Hi…my husband was diagnosed 2 yrs ago but had shown symptoms for at least 5 yrs before. So because of his age then,54, he was diagnoised with everything but PD…frozen shoulder,trapped nerves,rheumatism etc etc. Once the tremors started I went with him to GP and demanded he saw someone.Consultant diagnoised in half an hour…due to tremors,drooling,shuffling when walking plus other things…GP did apologise for missing it but said because of my husbands age he wasnt even looking for PD!!
That said in the last 2 years my husband still finds it difficult to acknowledge and wont actually admit it. HR at work know (due to driving being part of his job)but havent done anything and my husband has lots of heavy lifting in his job and he wont ask for any help in his work…there are lighter jobs he could be changed to. He insists he doesnt want special treatment and would rather just do the job…even though he suffers dreadfully at home as he is so tired… He cant seem to understand work/life balance he just insists on pushing himself at work.
He has only told close friends and obviously family… reply is always “I am ok no problems”… Even our Grandsons are commenting on the constant tremors in his hand.leg,mouth and face it is so noticeable now… So how long he will be before he admits that hes got PD I do not know? All I know is that it appears to worry me more than him…PD affects all the Family in some way…I worry that he is going to have an accident at work because of his denial…


#5

I know its a generalisation, but i think women are more likely to talk more about how they feel or seek out groups to cope. Theres no right or wrong way to deal with this PD thing. My husband is very supportive but he doesn’t want to be the one to bring PD up in case it upsets ME! As long as he sees me active hes happy.
But i know im glad its me who has it rather than him. Weird i know but hed be a nightmare!
I think all your husbands are lucky to have such supportive and caring partners.


#6

I really wouldn’t even consider using your undercover filming without his permission
I would never trust my wife again if she did that to me.


#7

Thankyou so much for your replies.
I must admit today was a total disaster. Hubby was seeing his consultant over his frozen shoulder , which incidentally came just before the PD symptoms.I brought up the possibility of PD, and to my absolute horror hubby glared at me ( we all know that glare) and despite my continuation, blatantly denied the tremor, stony face etc and dismissed it as tiredness. When we left, he told me he wasn’t ready to talk about things arghhh !! He is now being tested for diabetes and due to the fact he can’t sleep and has constant pain has been prescribed amitrypoline.
He continues to run our business,( son works for us thankfully) but has not told our employees and like yourself, babesbrown, I worry he will have an accident. He has not told friends, and I have sat next to him , whilst out with them, and as tremors start he will disappear to the bathroom.
I have read your reply’s to him ladies and have had no comment off him. I really appreciate your support.
I really hope for his sake ( and my families) that he will seek help.
I appreciate it is hard to come to terms with, hubby has told me he will not be able to cope with people staring or taking pity . Life can be so cruel. X


#8

Omg Divine1 that is exactly how I feel.
Men , believed to be the stronger sex, definitely have problems coping and coming to terms, in general.
I had a small scare down below years ago, and didn’t tell my hubby until I went in for surgery. My then teenage daughter, took me and we told hubby as I was wheeled down to theatre. Thankfully it was a scare, but I was more afraid of coping with him, then the cloud that hung over my head.
My hubby , wants to sell our home ( we have a small holding ) as he’s worried, I won’t cope. I keep telling him, we will get through it and let’s wait until we know what the future holds.
He is trying to take me out all the time, to make up for what’s ahead.i keep telling him we will get through it. We don’t even know what we are dealing with.
I really can’t believe the way he’s reacting without a diagnosis and a prognosis.
If it was me that was That was I’ll,he would piggyback me to the moon and back . I wish he would have the courage to face his fear
I really admire your strength Divine1 x


#9

Thx but like everyone I have my wobbles and down times. I feel my best when im active (yoga and working part-time) and looking after my diet.
I think with the fatigue and anxiety that comes with PD it can be overwhelming.
Maybe a new tact to take with your husband could be to agree not to mention it for say, 3 months. If by the end he’s still struggling, he has to go for a diagnosis. Just a thought.


#10

Concerned 1, firstly, welcome to the Forum, so glad you took the time to come and seek us out, we try and give one another tips and advice about all sorts of issues with Parkinsons. It is the right thing to discuss the Disease with like minded people, hopefully it will help you come to terms with what you are dealing with. There is nothing to fear, you just adapt your life around the condition what ever form it takes as we all respond differently and have different side effects, mine are balance issues and forgetfulness plus I have a Dystonic Tremor despite having a Deep Brain Stimulator fitted. I’ve was diagnosed seven years ago. Rather than ignoring it I made light of it and very often took the mickey out of myself in company. I have adopted a positive attitude to the condition and don’t let it bother me. As and when your husband is prepared to talk to a Doctor about it your next port of call is to speak to a Parkinsons Nurse in your area(it may help if you contacted them before your husband speaks to his Doctor to sound them out), they are very helpful and understanding people. Keep us posted on your progress and just remember, you and your husband are not alone.

Les


#11

Unfortunately your husband will have no choice but to do less and do it slower.
It sounds to me as though he is used to being in control of things. That will change too.
Once he accepts that he has Parkinson’s he can start making his life as comfortable as possible…For him !!
It is a guilt trip. I still beat myself up when I can’t do things that I used to do. I am learning though to concentrate on the things that I can do.
My best advice is support don’t push.
If you can see it, he is aware of it too.
He may be in denial now, but Parkinson’s is relentless and in time he’ll accept it.
That’s when your role really kicks in
Hubby


#12

Hi les,
Thanks for your reply and well done for having such a positive attitude.
I appreciate we are all different and obviously deal with things in our own way. I would like to think I could take your positive approach, but (thankfully) I have never been in your position.
We are no stranger to illness in our household, sadly my daughter ( now a mother) suffers from uc and was home tutored from 13 years. The subject was very much taboo with her, hospital admissions meant lots of dissapointment and unreliability and her keeping this a secret meant over the years she lost friends due her unpredictability and unexplained mood swings. I became mum, best friend Nurse and punchball for over 7 years, until she accepted the condition. Thankfully fast forward 7 years, a level headed business woman , who talks openly about her condition, even going to hospital to talk to teenagers about growing up with the condition. I now my hubby will eventually ‘GET’ there, it is just so sad to see him suffering the way he is, with help so close.
When our daughter was poorly , he wouldn’t wait for a diagnosis and took her half way around the country within 72 hours of her falling ill to start treatment. That is one of the things we find so frustrating.
I think one of the hardest things with my hubby is going to be keeping his mood positive, as sadly he can slip easily into a deep dark pit. He has had health problems in the past, and we really had a hard swim against the current to get back to shore. Best dig out the dingy and put on the swimsuit … we will get there.
Thankyou so much for being here.


#13

Hi All

I would just like to say I dis agree with saying about men not coping. I have had PD for 5 years and R A for 20 years.
In the last few years my husband has been diagnosed with Chronic Myloid Leukaemia. He still looks after me holds down a full time job albeit he is going to retire this Xmas.
He was quite ill at the beginning but his meds are keeping him alive.
He still gets told that things can change and so attends hosp every 8 weeks to get checked. The difference being my meds help me to be able to do things whereas my hubby meds are keeping him alive . A big big difference.
I do think we need to keep in mind that P D is not going to kill us.
I feel I’ve went off track but does it really matter.

Babs
Hoping you are all keeping well.


#14

Wow babeswood you really are having a tough time of it. I really feel for you. I wish you and your hubby well. You sound like soul mates. My hubby and I have been together since we were 16.
My hubby works incredibly hard, in our family business and I know he will continue to do so, for as long as possible. It is what keeps him going. We have been plagued with various family health problems, but have fought our way through.
My biggest worry at the moment is his denial, and that he will hurt himself. I appreciate PD is a condition and not a life sentence, however my hubby at the moment cannot see that. I know we will have to adapt to the way things work out for us.
Good luck


#15

Thankyou hubby for your reply.
I actually filmed with my husbands permission on the advise of his physio. After seeing the footage, he asked me to delete it. I must confess, I did keep one, but have now deleted it. I did it as I was hoping when he spoke to the consultant, it would help with the diagnosis.
I appreciate what you are saying, about hubby , needing to come to terms in his own time. I agree,.However, for us as a family , to watch him, hide away and be ashamed of his condition, is heartbreaking.We tell him, it is nothing shameful, he needs help and he will improve. I’m afraid he will slip into depression, as he’s very agitated and sad.Tiny baby steps…I’m afraid.
Thankyou for your reply.


#16

Just be there for him.
Everybody is different.
His world as he knows it is gone, over.
Things will never be the same.
Imagine how disturbing this is.
Suddenly he has a weakness,a vulnerability that everyone is going to be able to see. In his mind even to use against him.
Parkinson’s messes with your head.
Trying to deal with it alone is ultimately impossible.
Good luck to you and your family.
Hubby


#17

Hi Babs, I didn’t mean all men dont handle diagnosis well. The men on this forum have shown how well they are coping. Its just that women speak more freely with eachother and luckily can get feelings out. It was a generalisation. Im so glad that both you and your husband have a great attitude to living your life. You’re a great example to the rest of us.


#18

No probs I did realise what you meant I just went off in a tangent.
All the best to you and I do agree that woman open up much more take care
Babsx


#19

Thankyou everyone for your kind words.
I’m going to take ever day as it comes, not mention the dreaded PD and wait until hubby is ready to move forward.
I’m pretty sure hubbys frozen shoulder is related to PD. His liver function has been mildly elevated and he is being referred to a gastroenterologist. Has anyone else had this please.
Thanks


#20

His shoulder could be due to “cogwheeling”.
I get it in my left hip and right shoulder .