Any Wives with A husband Diagnosed Like A Chat

Hi Lizzy. Just like you, my husband was diagnosed in September of last year. He’s 61. Covid delayed his first visit to a GP/ hospital as like everyone else we were avoiding “unnecessary “ visits and his symptoms weren’t terrible, we just knew something wasn’t right. He has it worse on the left side, with a general weakness and stiffness in both left limbs. Thankfully little in the way of tremor. His poor sleep is the worst part for him, I think.
I just feel a bit lost sometimes. We are in separate bedrooms as I can’t function in the day with him awake beside me at night. Then he’s not up and about until 11.30- midday, by which time I feel half the day has gone. Also he wasn’t exactly Mr Demonstrative before but now he’s starting to get that fixed face look and I rarely see a smile.
I guess some days are diamonds and others are just stones.

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Hello ladies. Posted the above and then read right down to the bottom most recent part of the thread. I feel so many kindred spirits on here; just being able to hear the honesty and the daily grunt and grind that resonates with my own situation and that we are all dealing with makes me feel less on my own. Emotionally sometimes when you stop and try to gaze forwards it feels so dark and uncertain and then you have to just force yourself to try to see the positives, and not think about what if. Thank you all for your frankness and honesty. Good to know I’m not on my own.

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Hi Rach

Do they know their Dad’s diagnosis? My eldest grandson who is 11 and lives a long way away so doesn’t get to see us very often, asked if his grandad has the same problem as Michael J Fox which amazed me.

Very difficult but can you try and tell them that their Dad isn’t too well and not to take what he says to heart? Probably not much point talking to your husband about it if he can be ‘difficult’ at times, but perhaps you could get him at a good moment?

A tricky one. You must tell yourself it as well, you are the backbone of the family. Look after yourself.

Jane

Hi,
My husband also was diagnosed 11 years ago at the age of 54. He recently has also shown decline in physical and mental state. He also has dementia and I really struggle now to understand what he is saying. He finds it really hard to find the right words to express himself. I have made up some picture cards of the everyday items that he uses and sometimes loses. Am also looking at a stairlift as he has started missing steps when walking upstairs.

Hi Grolly, just read your post. I’m so sorry that your husband is not doing so good after 11 years with this wretched disease. My husband was diagnosed 6 years ago. He had a total knee op in November which was a great success and he’s now able to walk free from pain at least. His cognivity is certainly not as good as it was but I am trying to keep him interested in life as much as I can and trying to keep him active by going to the gym and out for walks together. He also attends Men in Sheds which is great for retired men to get together. I often think the mental effects of PD can be far worse than the physical, but when you suffer from both it can be totally overwhelming. Sending warm wishes to you both and take care. Jean

My Husband is newly diagnosed, into his 4th week now. He’s very quiet and sleeps mostly all day. Managed a little walk today with the aid of his new walker, however he’s very scared and nervous.
Currently on Madopar and Domperidone to help with his nausea.
To be totally honest, I’m just wondering if his medication is working as it should? He takes Madopar 2 x 3 time daily but this only lasts up to 3/4 hours. Anyone else experiencing this :thinking:

Hello, I have only just joined this forum and reading your post, was so familiar to me. My husband was diagnosed 6 years ago and like many have written previously, the first couple of years, things were okay. My husband too,suffers from sleep disturbances, usually starting about 4.30am.At first it was the Irish dancing , legs going in all directions, whilst he slept blissfully on. Then the singing, nothing like being woken up to a chorus of Oklahoma, which he doesn’t even know the words to! Then the laughing in his sleep, which I found the creepiest, but worse the shouting out and swearing and relieving when he was still at work. Trying different medications has helped with all but the shouting out, so I have moved into the spare room with earplugs, for the sake of both of us, as my husband is totally unaware he is doing it and I was sleep deprived and grumpy!
Personality wise, he’s become quiet, whereas before, he was very outgoing. He’s still funny and we laugh, but at times he comes out with some stunners, as though he’s lost his filter. Also, he isn’t affectionate anymore and he’s aware of it, so I go up and say” Time for our once a day hug!”
Reading comments on here, as helped enormously, some things you can’t talk about to your children.

We have just had a family visit which necessitated me moving out of ‘my’ bed in the spare room and back in with H for a few nights. I was very glad to move back. I don’t cope well without sleep and he is quite active at times during the night. I haven’t been punched again though, I’m glad to say.

Sometimes I wonder how much is PD and how much is grumpy old man syndrome… He has been moody for several years, actually looking back, for most of our marriage! He is still quite witty though which is good.

He has a telephone clinic appointment this coming week…He is still hoping for an increase in Sinemet… I’m not so hopeful but we will see.

Have a good weekend everyone.