Forgot to say - he is still refusing to take any medication too. Can’t win
Hi RachRob, sorry to hear things are not too good for you at the moment. You do need to share your feelings or it could all become totally overwhelming. Use the forum to get rid of your anger and frustration as it’s no good bottling it all up, believe me I know… I don’t know why your husband is refusing to take the meds, but if he’s in denial then it’s understandable. I hope he soon begins to accept the diagnosis for both your sakes. But if I’m being honest, it took me (not my husband who was just totally relieved to find out what was so wrong with him) a long time to come to terms with it and even now I have some very dark days. Hopefully, once he starts on the meds and sees improvement in his symptoms, he’ll start to accept it and you will both find some peace of mind going forward. Take care. Jean
Hi Lizzy
If you use Facebook atall there is a group there for partners/caters of people with Parkinson’s - called Parkinson’s Caregivers support - it’s very good lots of daily chats
I know there is no magic wand and there will probably always be a bit of a tremor, but the annoying thing is that with his second prescription which was after the initial small one, his tremor almost went. Then the next prescription was for a lower dose and it returned with a vengeance. Telling somebody they just have to live with something may be the only answer, but isn’t it better to explore all avenues before shutting the door? We have been invited to a friend’s party at the weekend, we intend to just show our faces and then drift off. H finds it highly embarrassing to appear to others like a shaky old man, which is his main worry at the moment and getting him to go anywhere is difficult. I have morphed from a wife into a carer. …more to remind him to do things than physically at the moment. Someone has to keep the ship afloat and unfortunately that someone is me.
Morning Janey,
What a disappointing appointment you had with the PD., you expect to come out of those appointments with reassurance, the disease itself is hard enough to deal with let alone having a PD nurse that doesn’t want to help with the symptoms.
I totally agree with what you said and if the PD was so quick to point out that this is the beginning of your journey then surely that is even more reason to explore more with the drugs until the correct drug and dose is found. Have you called the helpline on here at all before? I have called a couple of times and requested a call back from the nurse. They are lovely nurses and I came off the phone both times I have called feeling very reassured.
Did your husband have bad side effects from rye higher dose before? Just wondered why it was lowered in first place, sorry if you have already explained that I may have missed it.
Give the helpline a call even if its just to have a chat.
Hi Lizzy
No, he had no side effects with the higher dose. He only realised the new dose was lower because the tablets were smaller. No idea why it was lowered.
We will wait until he sees the doctors in July and hope they put his dose back up. We have both been left feeling a big lack of confidence in the nurse. I won’t repeat what my H said afterwards! .
The consultant had been lovely, treated us like people not patients (a big difference!) and specifically said the medication should help his tremor!
The helpline will be my option if we don’t get anywhere in July
Hope the weekend is good for everyone.
Hi Janey,
I think the PD nurses are quite surprised that seniemet has not helped my husband’s tremor. Nothing has so far, if anything all three medications that he has tried the tremor has been much worse
Mind you he is still managing to build me a summerhouse😁
Hi Lizzy and everyone else
I too am fairly new to all this having only just felt the need to reach out. I am not sure I want ti go to local groups as I think it’d be a stark reminder of the journey ahead, hence I’m trying the forum. Has anyone been to their local groups? Did you find it beneficial?
I am concerned that my bucket of compassion is just not going to be deep enough. I get very frustrated at the lack of self help and positivity that is required to cope with this curse. This is my journey too and I have absolutely no control over it whatsoever.
I can definitely relate to comments you’ve all made. I speak to my husband and he sometimes doesn’t acknowledge or respond but when I ask did you hear me he says yes…. He has also expressed that he doesn’t want me to show my frustration to him as he feels guilty. Again, hence this forum as I don’t want to keep moaning to my friends…
Gotta stay strong sisters…
Hi Rosehip
Yes, it’s like being made a member of a club nobody wants to join against your will. I have contacted my local group, but only so if I need help in the future there is support out there. I can understand what you mean about a reminder of the journey ahead - my husband has no intention of ever going. But I am not sure he has even grasped properly that it is a progressive disease. As for being worried that you won’t be able to cope, my way is to take one day at a time. The worst may never happen for a variety of reasons. I try my hardest not to cross my bridges before I come to them but it is very difficult, especially for a born worrier like me.
This forum will be my main place to let off steam when needed, as friends and family can only take so much.
I know in our case it is early days and the nature of the beast is that it will get worse, but for today we are ok. Tomorrow can wait.
As for your husband not acknowledging you when you speak to him - mine does the same, but has for a long time. Infuriating!
X
Hi ladies, and hope all is good with you today. Just reading everyone’s stories always serves to remind me that I’m certainly not the only one to have this most wretched of diseases inflicted upon them. As we’re further down the line (6 years on from actual diagnosis but possibly much longer) than some of you who have joined the forum), I can see much of how I felt in the beginning in your words. I remember saying to my husband when we came out of the consultation confirming PD diagnosis, to just take the tablets and just forget what they’re for. I just didn’t want to think about it at all, while he was just relieved to know what the problem was. I must say as the years have go on I still haven’t joined a group as I’m worried I’ll see someone who is much worse than my husband. I think he would join one though, but I would rather he just stayed in mainstream activities for as long as possible. So he goes to Men in Sheds which is for retired men and gives them the chance to learn new skills or merely just go along for a cuppa and a chat or play pool or use the small gym. He has also just started a stength and balance class at the gym for 25 weeks. He goes there twice a week. He enjoys both these outlets and so do I as it gives us time to do things apart which I feel is crucial to keeping things as normal as possible while we still can. Time to worry about what the future holds when we get there…
Any advice on how to get yellow sweat patched out of bedding?? It is only on his side and is fairly new bedding. Cleaning regularly but doesn’t seem to shift. (Sorry if anyone is eating….)
Hello RachRob, I’ve noticed those stains on my husband’s bedding too, mostly on pillows under pillowcases. Are they connected to PD as I just presumed they were normal sweat stains. I have noticed my husband sweats more since he was diagnosed. I’ve no idea why that is though. Will look out for any tips. Jean
Yes, pillows and sheets. He also sweats through the back of his shirts too. One of the first things I noticed was the change in his sweat as it went musty rather than normal smell. It also has an oily feel to it?!?
Hi RachRob, yes, I too have noticed a change in his smell. As you say it’s quite musty and slightly unpleasant but he showers daily so it’s not a body odour from not washing. I’ve also noticed an increase in oiliness in his skin and can also detect this and the strange smell on his scalp. I haven’t mentioned it to him as it may cause him to feel embarrassed but he probably wonders why
I keep saying I’ve got the shower ready for you and try this nice new deodorant! Unfortunately he has very poor sense of smell so isn’t aware there is an issue. It’s such a lovely disease isn’t it? It just loves to keep on giving… Take care, Jean
Hi ladies, nice to connect and be understood. I recognise all the things I’ve been coping with in the conversations. Helpful to read through. Hubby has done 9 years with the dratted disease and I’m struggling with him looking fine once his meds kick in and we are out and about - but I get all the ‘issues’ behind the scenes and at night, having to give 100% help sometimes when he is ‘off’. Daytimes he plays tennis, goes to the gym, etc etc, night times I’m helping him transfer out of bed for loo visits and later mopping the ensuite after accidents. It makes me feel very lonely as no-one understands or believes me!
He often refuses adaptive solutions to his problems as he wants to continue doing things ‘normally’. Sigh,
Yes, he smells different, doesn’t help maintain the attraction element of our relationship.
Yes he has vivid dreams and kicks and punches (mostly solved by meds to quiet the brain - such as are often used for epilepsy) and we bought a giant super king sized adjustable bed with two halves - separate mattresses so his movements don’t transfer to my mattress. But he still talks and ‘goes on’ in his sleep, sorting out the world’s problems. Sometimes he gets the giggles and laughs out loud - very funny. Must try and record him sometime.
He gets dizzy due to postural hypotension - I’m often afraid to leave him - he passed out on the stairs recently - not a good idea.
He sometimes needs a prompt or physical assistance to stand from sitting.
He gets ‘foggy brain’ and forgets things, cannot make decisions, leaves lights on, cupboard doors open and often (annoyingly) the fridge door open.
If during a foggy brain period I ask him something, he says ‘I don’t know’ with a blank face. It has become our joke - if he asks me something I sometimes answer him blankly ‘I don’t know’ and we grin.
His refusal to accept help is a problem sometimes. I’ve learned not to say ‘Do you want help?’ the answer is always ‘No’. I now say 'I know you don’t want help but do you NEED help? Answer is often ‘Yes’ grudgingly.
He struggles to dress and as a retired Occupational Therapist, I know all the solutions and am sneaking in the clothing adaptations… velcro cuff fastenings on shirts are the latest, accepted because they look normal, plus some whizzo ‘quick release’ normal-looking pants from the U.S. Normal-looking drop front trousers complete the quick-I-need-the-loo solution.
Yes - professionally I know it all… BUT tomorrow we are joining our local PD support group where those with PD meet in one room and carers meet in another for coffee and natter - bit like this… boy, do I need it. I’ve got to the point of needing support. Professionals know NOTHING about the daily grind do they?! We love our other halves to bits but there is a huge need for the AAAARGH!!! offload…
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Morning Gardener 1, just read your text and thought, oh my gosh, that could be me writing! We are 6 years (but like most, probably more) down the PD line. I’m glad you’ve touched on the physical attraction side of things as I’ve noticed it’s rarely mentioned on the site. I must admit that I’m finding that aspect of our relationship increasingly difficult. Maybe it’s as we evolve from equal partners to carer, plus some of the more distressing bodily symptoms that start to creep in that changes our feelings in that way. Yes, I still love the man I’ve been married to for 50 years, but there’s no denying something isn’t ‘quite there’ anymore… It’s so sad to say that but like many others on the site, some days I’m just totally physically and mentally drained with it all. Like yours, my husband is fairly active at 70, going out walking with me, we go to the gym and he attends Men in Sheds and has recently started strength and balance classes which he’s enjoying, but come early evening he can just about get up from the chair and I always assist in getting him into bed (which I might add is in a separate room and has been for a while) We are going away with my sis and bro in law for a few days next week and I’ve booked a twin room but I know I’ll hardly sleep as he’s up and down in the night. The group you describe sounds great. There’s nothing in my locality that seems to focus on the carers of pwp. I hope you find it helpful and at least you know you’re amongst others who know exactly what you’re going through. Keep me posted on that. Have a good day and as per, Carpe Diem… Take care, Jean
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Thank you Jean, yes, there are so many aspects to this disease, in common with other neurological conditions. I recall with my professional hat on, going to a brain injury study day and in the last session the whole thing about husband/wife relationships when the affected partner was very changed was approached. A wife whose husband had a brain injury (he was sitting in the front row, now functioning similar to a 6 year old) was interviewed about how she had coped. She said they had had a wonderful consultant who had said to her ‘He may not be the man you married, but he won’t be any less lovable’. I have found that to be the case, but the kind of love changes. Physical intimacy is hugely affected - I hate feeling the PD in a hug, but a hug is a hug, even though it is a different sort of hug.
The local PD group was welcoming and we’ll try it for a bit. It will take time to get to know folks. Gathered some useful information - that’s a start.
Hi and glad to hear you had some positive vibes from the PD group! I’m sure as you both become more used to the set-up you’ll find it helpful and hopefully you will find it a good place to air your feelings without being judged. We all need to offload now and then and sometimes it’s easier with people outside of the family. It’s certainly something we may look at but there doesn’t seem to be a group just for wives/partners in our area. I’ll keep looking. In the meantime we’ll continue with our mainstream activities for as long as we can. Have a pleasant evening. Jean
My daughter and I went to our local PD group a few days ago, husband won’t have anything to do with it. They were all about 8 or 9 years down the line and I did pick up useful tips. They have lots of social events, but as said previously my H doesn’t socialise at all, and his conversation is limited to cars… I will attend again though , the support will be useful.
I can identify with the physical intimacy problems, H has a bad tremor and any close contact is accompanied by fast rhythmical tapping - very offputting to say the least.
Morning ladies, any advice on when DH is short with the kids or says mean/unnecessary comments to them?!? They are only 15 and 13! Makes me so sad