My husband, aged 54, was diagnosed in November, but I'm only just finding out about what this means for us as a couple. I am very concerned about him getting dementia and the huge impact this would have on our lives. I know that we should be positive; I know that the disease is very varied and we can't predict anything for sure; and I know that if it did happen I would find a way to deal with it, but the truth is I am really terrified.
My husband has a fabulous optimism and has got through all of life's challenges by just being totally positive. I am usually very positive too, but for the first time I feel like I really can't match his optimism. He wants to just get on with life and not think about it; I really need time to adjust and deal with something that feels huge. For the first time I feel like we aren't dealing with something together as we see this very differently and also we would be in such different situations if his brain really deteriorates. I feel very isolated at the thought that I might end up being his carer and neither of us would have a life. We are both such strong, independent people and I find it immensely difficult (much as I really love being with him) to imagine myself as someone who spends all day looking after him, particularly if he is very changed.
I knew he had Parkinson's back in November and I wasn't really shaken up about it until I found out about the dementia recently. I thought I could handle it and I think I probably can handle most of it, it's just the dementia that really frightens me.
I expect that in the future I will be someone who writes encouraging things on this forum trying to help people feel better, but right now I feel scared, miserable and alone and I'd just like to hear that someone out there understands.
Thanks very much,
Mel (who is usually a much cheerier person than this!)
i have early stage pd. sometimes it takes a good while for the realisation to sink in. I'm 57, also with a hubby and grown up children. My madopar seems to keep the tremor low key. Has your husband actually been told he has dimentia? I wish I had all the answers Mel but I don't myself as still learning about this illness myself. The forum is a brilliant place to express how you feel, ask questions and generally share what you need to. The help line too is there too and they do care. I'm trying to take each day as it comes and perhaps not look too far ahead. You're not alone so always feel you chat on here.
my best wishes to you both,
I am no expert but I did read somewhere that the risk of having dementia with PD was reduced in younger onset. I will get flogged to death on here if I mention Vit D once more but is linked to PD, dementia, MS in short a lots of folks with PD have low levels of vit D. I was told by parky nurse very important to keep levels normal vit d protective see advice on dementia sites and on nhs recommendations.
Anyway lecture over
Here goes Mel, its really ok to feel this way a sense of loss and fear and you both will be feeling this. You worried he will need more care and maybe he is worried about being a possible burden in the future.
You sound a top team, you say this is the first time you are not dealing with things together, well thats ok this is probably the first time the pair of you have had to deal with a bombshell like PD..?.give it time perhaps think of things you can both do to improve your health and his. It would seem a great shame with all this worry you forgot to look left and right and was run over by a double decker bus. What I am trying to say is nothing is set in stone , you could lose your marbles before your hubby....people get dementia and dont have PD and PD people can get dementia. I used to envy my first husbands health , he felt sorry for me then last year he dropped dead after a heart attack. I feel sad that they took life for granted and never got to do everything they wished as a couple.
The future try not to think too far ahead, you can never plan for something that hasn't happened and may never happen.
Was just going to respond, but Lexi and TeeHee have said it all for me.
Best wishes to you both.
Oops posted too soon, Mel take good care of yourself look out for babestations posts a top woman with a husband with PD. I have had PD for 8 yrs as far as I know my marbles are intact, my partner left me as he said I would hold him back, I try not to judge we can only do what we are able to do. I wish you much love and luck, wherever your journey takes you. xx
Thanks so much for replying Sue - it made me feel better just to write it all down and be honest with someone. My husband is actually doing pretty well - he is on Selegiline and it has reduced his tremor a little. He hasn't been diagnosed with dementia and is still able to work and seems to be thinking clearly. I guess the issue is just my fears and what a big bombshell this has been. I am grateful that my son is now 19 and away at Uni and starting his own life, but it also makes me afraid of being stuck in a very difficult situation and be isolated. You are totally right- we don't know the future, so for now I should just take it one day at a time. I didn't know the helpline was for emotional stuff too, so that's really good to know.
Thanks very much Sue - good to meet you
Thanks very much for this Teehee - it made me feel a lot better - and I'm smiling at the thought of the double decker bus coming along when I was looking so far off into the distance!! Very good advice. I'm sorry to hear of your husband's death - thank you for telling me - it is a very good reminder that there really isn't any point speculating so far into the future when we are in the present.
It really helps to hear other people acknowledge that it's a bombshell. My husband has just said 'everything is OK, I will be fine' every time I have tried to talk about it and I think it made me feel weak - not having the strength to just be optimistic. However, I think the truth is nearer that he just isn't ready to talk about it yet, so he won't engage in any discussion. At least I'm not crazy thinking this is a biggie!
Thanks for the vit D advice. My husband's work takes him outside a couple of days a week so I'm guessing that will help. Apologies if you've said all this before, but do people advise a supplement too?
Thanks very much for taking the time to reply - I feel much better knowing that I am not alone.
Thanks Supa for being there - this forum has definitely helped lift my mood and focus me on the now . I'm very glad it's there for the bad days - and the good days too!
As everyone above has said take one day at a time.. When I first got diagnosed I was very positive and didn't look up any information on PD. I just got on with things as if all was good. That kind of helped me cope. When I did crack my husband was relieved as he felt I hadn't taken in the enormity of it all. I really feel for my husband and children as they didn't sign up for this. All I can do is do my best to keep healthy and not lie down and wait for something to happen. Live life as best you can. As Teehee says no one knows what's around the corner.
Pleased to hear you feeling a lot brighter. If you are interested in vitamins etc worth getting a blood test for vit D for hubby as parky people may not process as well, D3 is best as D2 not absorbed so well. B12 for tiredness , omega 3 and 6 good. There is ongoing research on gut health and a probiotics supplement good. Have a lòok at Hemp oil to cover the omega 3 and 6 so tasty and nutty , yum yum ! These are well evidenced suggestions. There is quite a bit on the net about regular excercise with regard to brain health have a google session and of course the help line is a good resource.
Plasticity, is interesting where one part of the brain can learn to do other tasks when its brain mate hits a problem. Fairly new ideas in the scheme of things, thinking positive is key think also placebo effect on trials. Think it believe it.
Final bit stress causes damage to the body and if the body continues to be in that heightened state wont help. Some evidence meditation for even a short time can break that cycle and the body can then relax into recovery mode. Again google meditation parkinsons to read up on theory, it is evidence based.
I am not sure about having a black opal to heal Parky and the supper dish of wing of a bat, a crushed snail in a redcurrant jus is going to do much good though.
Take care xx
Thanks Divine R - this really helps a lot. I think my husband is definitely in the phase on not wanting to think about it and in a way I think it probably is helping him to adjust, but when he feels he is ready to take it on board. I definitely feel more motivated to focus on the now and do what we can to stay healthy.
Thanks for getting in touch
Thanks so much Teehee - you make me smile!
This is really helpful advice - I will definitely look into all of this - it feels much more positive to have something to do that is proactive, and keeping healthy and fit is the best we can do at the moment. He does have quite a stressful job but he has agreed to give up some bits of it soon, so that's a good step. I think it's going to take him a long time to adjust, but hopefully with small steps we can move in the right direction.
Really appreciate your kind words and advice a lot.