First Time Posting.


#1

Hi there

I haven’t really used the forum yet… my husband is 43 this year and was diagnosed at 39 years of age.

At the time I was carrying our second child and so the shock of the diagnosis and a new baby was beyond tough. He doesn’t talk about the condition very much, hasn’t seen a counsellor, won’t join any groups (which I do understand) and is too fatigued to exercise. I’m guilty of getting frustrated with him because we are different in that regard and I’m more of a fighter. His fatigue has also affected his anger with both me and our children (aged four and nine). He switches from anger to tears very easily - is this something that’s common? I struggle to talk to him as he feels that I have the issue with PD from wanting to chat about it - he simply says he’s getting on with things…More recently he has noticeable dyskinesia on his left side (the PD is on the right) since increasing his does of Levodopa.

Tips and advice really welcome. Thanks for having me.


#2

Hi jo_scott78,
Sorry to hear you’re in this horrible situation. Sometimes it’s worse for the partner of PWP looking on. Your husband may be depressed either as a result of medication or more obviously his inability to cope with his diagnosis.
Fatigue is a big part of Parkinsons but he has to find some form of exercise to start as all evidence points to its benefits. Is there something he could do with the kids? Also, i know he wants to get on with things but is there a local parkinson’s group that you can contact to show him how PWP are getting on with life? These are all daunting things but necessary. Some people take longer to come round and accept this change. I know my husband sees me try my best to tackle life with Parkinsons (most of the time) and that makes him cope better.
.


#3

Thanks Divine1 your reply is much appreciated. The only groups are the middle of the day (we run a business together and so very much working!) with older people so his view is that this would be depressing. Sadly he won’t budge on that. He takes our eldest to football but as a spectator and that’s about it.
Thanks so much for listening :blush:


#4

Hi jo_scott78,

All the issues you have described, tears,anger, fatigue are all very common so your husband isn’t alone with that. My concern is the refusal to do any exercise, I’m no expert but I would suspect his condition would progress more quickly unless he starts to do something. It must be difficult for you to persuade him to join a gym or take part in some form of class but why not try and do something as a family, maybe a country walk together in a local park or something.

It may trigger some enthusisam to do more. Hope you find a way through

Ian


#5

Hi again,
Ieddleston is right. All evidence is pointing towards exercise being a major help to slowing progress.
I agree that going to groups with people further along than you can be upsetting. It happened to me but then i realised that people who were 10/15 years ahead of me were still trying, still moving. Try check out. Younger groups or PD warrior groups. Not sure of your area.
You both are still young and of course work is a big part of your life. Stress is a major factor in exacerbating symptoms so that needs to be kept to a minimum.
The other factor is your kids. Harsh words coming up, does he want to be present and healthy for them. I have 3 teenagers and i want them to see me fight this thing anyway i can.
I feel he will have a break through at some point and he will help himself. All you can do is suggest things and continue with the great support you’re clearly giving him.


#6

Hi,

I have had parky pal for about 10yrs, just joined a gym and with a few grab rails put into the changing room going to try to swim every other day.

Now , when I was diagnosed did not want to talk about it, some people don’t. Thats their choice ? Maybe like me he was kinda ok about it , digesting it all, not wanting to chat about it at this time.

Your hubby may be right, your need to talk things over, may be your way of dealing with his diagnosis. If you reflect on your own thoughts, feelings and be honest with yourself, ask the question is it you that needs to talk?

Just for the time being look after you, get counselling if you want to talk, it may help.

Well back to hubby , he may be like me, I need to read information digest it make my own decisions, if too many people start telling me what I should be doing I turn into a ratty, stubborn old goat.

EVeryone has their own coping strategies , there is no one size that fits all.

I needed time to get to grips with it wanted to know people were there for me, one step at a time.

Keep up your normal routine , ask him how he wants to deal with it, respect his view. This may reduce the stress levels.

One step at a time… I still dont like the support groups but you cannot shut me up about parkinsons now.

Its a shock for both of you, I was 46 when diagnosed I understand.

Hugs xx


#7

Hi im keith im newly diagnosed but i have gone through what your husband has , my wife and 2 grown sons used to walk around on egg shells and sometimes still do , as my anger would rise with no apparrent reason .
I have since learned deep breaths with eyes closed helps ease my head , i would wake up and have had rows with the wife at 4am in the mornings so i know what you are both going through
I have left hand tremors and stiffness in my left arm and a stutter,
Yes there are things i have a little trouble with now but i work round them or go slower, i found i was only fighting myself
Ive lost a few of what i thought were friends they acted like i was contagious Their loss , but the mojority have stood by me and supported me

Just remind him it isnt his fault that he has PD i didnt ask for it either
If life was fair id be healthy and rich but im not and i aint
If you need to chat , im here , might be a day or so before i reply as i tend to keep myself active
God bless , take care
Keith


#8

Thanks Ian. I’ve had another chat to him since my last post. He knows he has to do it but getting him to is another task. I’ll keep trying.


#9

Thanks TeeHee. Appreciate your words of support :blush:


#10

Thank you Keith. It’s good to understand others’ journeys. It really helps me to understand what might be going on. His fatigue is the killer as that sparks the changes in personality and anger.
Reassuring to know it will get easier. Thanks so much. Jo


#11

Hi Jo. Glad i was some help. Once he learns and understands the condition does not have to dictate what he can and cant do. The anger will disepate.yes there will be some limits but they are for him to work out. Just being there and supporting him is better than any medicine It wont happen over night but it will be quicker than you thought. I know its hard on you and for you. I put my family through hell and back , the things i said in anger were not nice and not me but with their support i made it and thats saying something. Im always here if you need help or just to chat . I know what you are both going through
If he wants to drop a line to me id be pleased to help.
Take care
Gob bless
Keith