We've both got it!

Ten years ago I was diagnosed with Parkinson’s. I have been lucky and maintained fairly good health but now I am just beginning to feel the more serious side to this condition. So just when I find I could do with a bit more help my husband has been diagnosed with Parkinson’s too. His symptoms include anxiety, apathy and depression and I feel he needs more help than me. We do help each other out but our relationship has changed somehow.
I am posting this in hope of hearing from any other couples who both have Parkinson’s, I suppose just to hear how you get along, compare notes and speculate on the future.

Hi Marymona,

Welcome to the forum. It must be very difficult for you both to manage this new diagnosis but we’re certain you and your husband will get lots of support and advice from our members.
There is some detailed information about anxiety and Parkinson’s here that may provide some guidance for you both.
We would also like to suggest that you contact our Helpline services if either of you need any additional support or information, our advisers will be very happy to help. You can contact us on 0808 800 0303 or email: [email protected].

Take care and best wishes,
Moderation Team

Hi Marymona,
I am responding to you as I was diagnosed with PD in 2011 about the same time as yourself, I am also carer for my wife who has had MS for 25 years. I am unable to tell you any secrets about surviving joint disabilities, much depends upon the state of your relationship We have been married for over 50 years and have enjoyed a close bond. . Fortunately, we both have an optimistic disposition and neither of us has a depressive nature. My wife is unable to walk and I am not so good on my legs now. I am no longer able to drive and we both get about on Mobility Scooters. As my wifes health gradually deteriorated we were always looking ahead and moved in to a Bungalow before she lost the ability to climb stairs. My roll has gradually changed and I now have to carry out most of the responsibilities which were previously undertaken by my wife such as preparing meals and general housekeeping. We have experimented with bringing in outside help to carry out cleaning etc. but we found it to be such an imposition upon our privacy that I prefer to do it myself as long as I can. However, I am currently re-thinking that as my PD symptoms are advancing. I wish you both well and will be pleased to respond to any specific questions you have, Gerrard

Thank you so much for your reply Gerrard. It seems that as a couple you have adjusted to the changing roles, and this is where we have some difficulty. For example my husband was the one who drove the car, looked after finances and always seemed to know what to do when family decisions were made. This is all fading away, he now prefers to wash dishes which he scarcely did before. Perhaps in due course we will settle down to a new style of life together - at least you have shown me that it can be done.

Thank you Edwina. I’m fairly optimistic about my Parkinson’s as I have had a good ten years and believe I can somehow manage a few more, but I will need all the ideas and information I can get to help my husband.

My husband and I have been married 52 years. PD was first diagnosed by myself 1993 but I never went to a doctor for confirmation until 2008 because I am so sensitive to meds. To this day I have never taken meds for PD. My husband has essential tremors and I firmly believe I noticed 2002 that he also has PD. I didn’t tell him until he started thinking that he may have it, that must have been about 5 years ago. He hasn’t seen a doctor for it yet. His mind seems to be affected since 2007 and even he is concerned now. Life changes with age, abilities that are still doable, and with how much each person can cope and roll with the punches. But the punches are mine and his at the same time, now! It is especially frightening for our 4 children, 3 of whom have some form of tremors now!

Jaffy, thank you for responding to my post. I’ve read it with great interest as it concerns two of my current preoccupations. First, couples with similar disabilities living together. You must be in a similar age group as ourselves as we ‘celebrated’ our 50th wedding anniversary last year (with a ready meal at the kitchen table - no energy for anything more). As you say, quality of life depends on being able to ‘roll with the punches’ and we do this better if we have someone close to support us; harder when you both get clobbered at the same time! Although I anticipated my husbands diagnosis I still remember the shock when it was confirmed and I realised that for a long time I had been leaning on a very shaky post. On the bright side, it becomes clear that the aim must be mutual well being, no room for selfishness when you are so interdependent. I should probably stop here but want to squeeze in two more general comments. (1) We may not be of much help to our children due to health issues yet they do much for us. One thing we can try to give them is an example of how to face later life with dignity and courage - they may look back at our example one day and appreciate it. (2) Finally, you have resisted the meds for a long time, but their adverse effects generally come after a long time. Is it time for you both to try out the benefits?

Marymona, you probably think I have forgotten you - that is because I did! Took a nasty fall in the garden that must have set off severe vertigo. Then family and friends problems and I just remembered you and my blackberry pound cake that I made a week ago and was in the fridge. I ate it and now it is your turn. Hope you have a sense of humor. We “celebrated” our 51 anniversary 20 days ago. As far as the med’s hubby is just stubborn about them! I am sensitive to most med’s, I have gotten into some fixes with what other people do well on. So I only take what I have to: for vertigo when it hits, ibuprofen for pain when I can’t take it any longer, and occasionally a muscle relaxer because 4 years ago I had a sever back spasm fractured my back! -no too badly thank God.

Good morning Jaffey, if your reply was late my reply is later. After an initial ‘dip’ into the Forum it got pushed aside by my efforts to book a grocery delivery with one of the big supermarket chains (all now sorted at last). So, in theory I could make my own pound cake, I’ve got the ingredients, but unlike you not much inspiration or energy - we are both trying to do up the garden as best we can, its exhausting. Anyway, glad to come next, after the cake. Now, two things about your reply; yes I do have a a sense of humour, its an absolute essential as far as I can see, what else can get you through the darker days? Second, its interesting to know that you are surviving without prescription drugs. Most of them are liable to produce nasty side effects and i do wonder how I would have been without them. You have good reason to avoid them, but eventually your husband may want to give them a try. I should say that for the first ten years I have benefitted from them, its only now that side effects are creeping in. As for our children, we had never thought of it but perhaps they have inherited some Parkinson’s genes since we both have it. Should I discuss it with them or just keep quiet?