hi,
My husband has had pd for five years now, he copes ok, its me that worries all the time. my husband sleeps a lot with his medication, any one else have funny sleep patterns. like to chat to anyone who cares for there wife or husband.
hiya i too look after my husband he has had parkinsons now for 6 years
and i too worry all the time about him
if u want to chat any time am here would love to talk to u
diane xx
Hi Twiggy and Manxie,
My husband has had PD for 5+ years. In the beginning I was just focussed on his meds and I was working, so it was easy to not dwell too much. I was glad to retire, but I can now see how my husband's personality has changed. We cannot communicate as we used to and he falls asleep so suddenly just watching a TV programme together is a challenge. I tend to get very down about it - while he copes brilliantly! I could really do with a Carers group, but in this area there is nothing for carers of PWP - plenty of other carers groups, but not that helpful for me. I originally posted a version of this on "Living with Parkinsons - carers, friends and family" and I suppose that is where this belongs, but I wanted to reply to you. Like you I am happy to chat about how we are feeling. I don't know if there is a facility for PM on here - not used it that much and now it is all new again! All the best to you both.
Dear Twiggy, Manxie are you members of a Branch or support group? I run a support group myself (it has been going now for almost 10 years) for the more active people with Parkinson's. It is made up of both PWP and their carers. I have now started a separate group for carers who meet regularly to talk about their worries and concerns. It has been a huge success. I am now calling a meeting for those PWPs who live on their own to find out what support they need.
If there is no Branch or support group, Parkinson's UK can help you found one in your area. Or look up the website and it will tell you if there is one close to your postcode.
Kas, I was diagnosed in 2004. I have great difficulty sleeping at times and sometimes don't sleep at all. However, there is way round this and it works. I take myself off to bed at 10.00pm most days. Doesn't matter if I'm sleepy or not. I try to read and usually fall asleep without realising it. The biggest mistake is to do anything stimulating like crosswords or sudoku. The body then gets used to this new regime. However, can't assure you how long your husband will sleep for. I seem to automatically get up around 2.00 or 4.00am. I do try to get back to sleep but am not successful all the time. Another method I use is to start a story in my head and while plotting it, i fall asleep again - works 99% of the time.
What I'd also like to add is exercise, the most important element in managing Parkinson's. A 20 minute walk every morning or Tai Chi or Yoga helps with maintaining a sense of well being, balance, muscle tone and positivity. If you can't get to a gym or movement classes, instal a Wii onto your television and your husbands can exercise in the comfort of your own home. You can do all kinds of exercises and play games which stimulates the brain helping with balance, hand/eye coordination and is good fun.
Hope this helps
Hi everyone
Worrying is so tiring and yes a group can be a help but if you can`t get to a group there are still things that might help. These are the things that my husband and I have done. First we talked about the things that I worried about, mainly how would he cope if I wasn`t able to help, eg I was poorly myself, and decided that I would
register as a carer
register on the emergency carer service
send a copy of the emergency carer info to our daughter and son for their input
fit a keysafe near the front door for emergency access
think about emergency call systems with a pendant for husband to wear
talk about a temporary care home or care in the home if I was really poorly
make powers of attorney especially for health and welfare for both of us.
This is enough for us at the moment but I`m glad we`ve had the conversation because his memory is now very poor and we probably couldn`t have it now. But I have a framework of how he would like to be cared for and I will have to make decisions based on that.
Perhaps others can offer solutions to how I can find an occupation for my OH. He no longer has the ability to play even simple games and can`t remember the plot long enough to read a book or much of the paper. Also he is very hard of hearing. I hate to see him just sitting staring into space or falling asleep.
Hi Twiggy, my partner and carer Josephine would be very happy to talk to you through my Forum membership
I have been dx'd 11 years and am still fairly fit and active. I started boxing training last week as I feel the need for more intense exercise - That and drinking plenty of water I can recommend
As far as sleep- is concerned I go through phases - or even cycles from sleeping OK to needing a two stage sleep - I wake up at about 05.00 to 06.00 Have breakfast and do odd bits and pieces then go back to bed for a 2 to 3 hour deep sleep which is most refreshing but does interfere with the day
As I said let us know if you want to know anything or just want to chat
Kind regards
Hi Everyone, I too care for my husband who was diagnosed 5yrs. ago. Unfortunately he already had a pre-existing condition, ankylosing spondylitis, which had run it's course years ago leaving him with very little mobility, and a host of related problems. Now, I'm finding it extremely difficult to determine where the AS ends and the PD begins. I'm afraid I do the very thing I was so adamant I wouldn't do, and that is nag him to help himself as much as he can. Not a lot, but I still feel guilty each time. I find it hard to reconcile the images of these 2 people. My husband now, and as he used to be. My heart melts when I look at him struggling to hold a pen, or a glass of water, but it swells when I see him hunched over the sink washing dishes. It's the only thing he can manage to do now as he can lean against the sink, and he loves feeling useful. Knowing that physically he will only deteriorate scares me, as I'm older than he is and riddled with arthritis. It is painful for me to haul him in and out of his chair and his bed, but we cope. Dressing has become a pantomime, so that start's our day off on a high, humorous note. I must say too that we have both kept our sense of humour over the years, although looking back on what I've written so far would indicate the opposite, LOL. His memory is really affected, but he's lucky as he gets to enjoy fun things over and over again. Another laugh inducing matter is of his voice becoming so soft, it's really difficult to hear him, exacerbated by the fact that I'm hard of hearing. Other people say it's better than going to the theatre, hearing us have a "conversation!"
I would like to ask a question. I know that difficulty in swallowing can be a symptom of PD, and Ray has been exhibiting that occasionally over the last 18mths. I will describe what happens, but I would really like to know if any of you have experienced the problem, and how you handle it. I make sure his food is cut up small, but without any apparent reason he occasionally has a bout. It is heralded by a hiccup which immediately puts us on alert. Sure enough, within a minute his mouth starts filling with saliva and continues to do so for at least one hour and sometimes much longer. He also coughs as though there is something stuck in his throat, and has to expel the saliva continuously. He says it feels as though there is something in his throat, but I don't think there actually is. Anyone out there know what I mean? Of course, when this happens, he cannot eat for quite some time, and we both also become very apprehensive about what and when to feed him next. Does this ring a bell, or is he on his own with this?
There is so much more to talk about, but I'd better leave some for next time. Good to know you are all out there..........it actually gives me some peace.
Cheers!
Hi there.
I don't come on here very often but noticed your post this morning. My husband was diagnosed when he was nearly 77 in October 2010, he will be 80 in December. To start with I was positively neurotic about watching him all the time for new symptoms especially when you read the side effects of the medication (don't!!). Now 3 years down the line, (sometimes it feels longer) I still worry but no more than I would have normally done with an 80 year old husband. Luckily his general health is good, ok he picks up things like colds more often but so what, he still runs his own business (on a reduced scale), drives (more slowly but safely), plays golf (uses an electric buggy most times but can walk 18 holes if forced) and enjoys his life. His mantra is that some of his friends would love to be here even with the PD but they are not. I admit we do have our down days when things seem to go wrong and he feels very 'doddery' but as he said to me yesterday 'I could be on a course of chemotherapy or the like'. We know things may get much worse but try not to worry about things that far ahead, looking at the present. Reading some of the posts I know we are very lucky in that we have received great care from the consultants and PD nurse we have. We chose not to go to our local, failing hospital but to one in the next county is only an hours drive away. They see him every 4 months and he takes part in the Tracking Parkinson's research programme every 6 months and we have an enquiry phone number if we have problems.
I know he sometimes feels worse than he says but can now pick up the signs. Like Suntan we have many humorous times and have a personal language to remind him to do things or not as the case may be. Our nurse fell about laughing when we explained the tortoise, parrot, shetland pony conversations we have. No we don't live in a menagerie but use them to describe the posture, freezing face and steps needed to keep balance in a small space!! Don't feel guilty, Suntan, about the nagging. Our consultant told my husband I had his (the consultant's) permission to be a nagging wife to which he (husband) replied 'nothing new there then'!! So nag away when you have to but do it with a smile or a laugh and he will know you are doing it for a good reason. Keep your sense of humour going, it's good to laugh. Take care everyone out there.
Hi suntan - there's some information about swallowing problems and things that can help in our information sheet Eating, swallowing and saliva control which may be useful. And am sure others here will have more experiences and tips to share with you.
Best, Liz
Hi Twiggy,
My wife cares for me. I am not at the completely dependant stage yet, but need help in certain directions. If it wasn't for my wife I would no longer buy socks......I firmly believe my feet have grown away from me.
As for falling asleep I behave like a puppet with the strings cut. I fall asleep at the drop of a hat. I know the start of so many films, but not the ending. I decided to do this to try and keep my mind functioning.
I can't tell you any information from the perspective of wives who care. I can give you the flip side, which is being the recipient of wifely care.
What does my wifes caring mean to me?.....
In the most important sense it means real love. My wife has displayed the courage and love to pick me up when I'm down and without this I would not be making the best of a bad situation. I would not eat properly. I would not laugh.
When I suffer a crisis of confidence, which PD seems to inflict, my wife boosts me up. I am pretty sure if it wasn't for my wife I could not cope with this untimely intrusion on my life.
I know it's a lot of responsibility for her and I try my best to reciprocate in whatever way I can. I also know she worries, but she hides it well. I try to dispell that worry even though I know what the inevitable outcome is of PD. It is not a terminal disease, but it does make a mess of you. So we go one day at a time.
I am sure of one thing......MY WIFE.
Hi,
Thanks for that. The bit about you falling a sleep made me laugh, as my husband starts to watch a film and never see the end so he rewinds but falls a sleep again. One day at a time is the only way, we happy enough, just hard in a another way. thanks for the reply
Thank you manxie, nice to here from you. yes would love to chat to you
this is the best thing to help all carers and people with pd, really glad I signed up to this site.
Hi Suntan
Please get a swallowing assessment for your husband. It needs to be through the GP to the speech therapy department and they should assess him within 2 weeks.
They will be able to advise on the safety of his swallowing and texture modification.
Hi Hatknitter
You've asked for ideas of things for your husband to do. I'm guessing things that don't need listening, concentration or manual dexterity.
How about:
shoe cleaning
bread kneading
play doh/salt dough modelling/squishing
holding wool for you to wind
laundry folding
sock pairing
is he artistic/creative?
hi Diane,
hope you dont mind me writing to you. my hubby getting really slow now he hardly goes out, and if I say lets go somewhere he says he would rather stay in. trying so hard to understand. Been on the waiting list for a bungalow but no joy as of you.
How are you and your husband?
sue x
hi everyone
that was a while ago we all had a chat. I am now looking to move to sheltered accommodation with my hubby, as his mobility is worse.
I feel I going round in circles and do not know where to start. we have been on the council waiting list but no joy. got to fill more forms in as his mobility worse and they said we might move up a higher level.why is everything so difficult.
I worn out as a carer.
Anyone with any ideas love to here from you
I am a carer for my wife who has PD her mobility isn't good, she has had two falls this month resulting in two black eyes and bruising on the same side of her face.She has had PD for two years now and she has the usual problems. We both get a bit down at times but try to get on with it. I don't know about the housing situation but have you spoke to a support worker for advice its a safety thing with your husband that you definitely need a Bungalow sorting, have you spoke to your GP maybe he/she could help.
good luck and keep your chin up
Billywhizz
Hi twiggy,
Sorry to hear of your housing issues. Please feel free to call our Helpline team for advice on 0808 800 0303. We're open on Monday-Friday: 9am-7pm and Saturday: 10am-2pm. You may also find it useful to look for support in your local area. You can search by postcode here: http://www.parkinsons.org.uk/local-support. Hope this helps.
Best wishes,
Edwina
Moderation Team
hi
I have emailed our support worker but not heard anything.
Hope you wife is feeling a bit better. yes we get a bit down
got a appointment to see Gp and get a letter off him.
Thanks for your advice, nice to chat
x
thank you for your reply Edwina,
getting in touch with our support worker to see if she can help, she just hard to get hold of.