New to Forum


#1

Hi

My name is Colin and after being retired for eight years I was diagnosed with PD 12 months ago, I was initially diagnosed with Essential Tremor as I hadn't got some symptoms that people with Parkinson's usually suffer from, but the tremors and other symptoms got that bad I decided to go and see a Neurologist privately and he diagnosed Parkinson's on the first visit. I take Madapar and Pramipexole and my symptoms have improved a lot. One of my main problems is not sleeping I don't know if that's the illness or the medication, I can have tablets to make me sleep but I am trying to avoid this as they can be addictive. This illness is certainly a life changer as in the past I have judged dogs at Shows all over Britain and Northern Ireland which requires hands on and shaking hands would make the dogs nervous. We also used to do a lot of walking with our dogs which I can't do now so my wife has to walk the three of them and as I have been advised not to drive by the Neurologist she also has had to take over the driving which has certainly been an experience (only joking in case she reads this).


#2

Hi Colin 

Welcome to the forum, really happy to have you here. I'm Kat and I work in the Digital Team at Parkinson's UK. 

Sleeping problems can be common with some people affected by Parkinson's. I know this has been spoken about on the forum frequently. Have you seen our website page on sleep and Parkinson's? You can read more here

Hope this helps, 

Kat


#3

Hi Colin

Welcome to the forum .  Although i too have PD i am no expert on the matter. It maybe the Medication or the Parkinsons itself that is upsetting your sleep patterns, or maybe a combination of both. If i wake up at 2 or 3am i could easily go back to sleep but instead i think to myself " do you know i could get that ironing done" so i do!. It is not because i can't sleep, its because i have too much going on!.


I shall be going now because it is midnight and i am extremely tired!  for the moment anyway LOL

 

Take care

Rachel                                                                                                                                                  


#4

Hi KatC

Thanks for the welcome and your support, I have had a look at the Website page which is very informative I have tried a lot of things but nothing seems to work. I now put an MP3 player on and listen to relaxing music but even then I can't sleep. It seems as though I don't need the sleep during the night but the next day I feel very lethargic and tired, occasionally when I have a good night's sleep I feel fine the next day. Just have to get on with it.

Best regards

Colin


#5

Hi Barnowl1

Thanks for your welcome, perhaps my name should have been Barnowl2 or Nighthawk. After about 4 am I just don't feel tired. My wife would probably appreciate my getting up and doing the ironing but then again she would probably have to redo it. I never had problems sleeping before I started with PD so it may be that I will have to cope with it. I was offered tablets to help but I think I already take enough medication.

Hope you managed to get enough sleep last night

Colin


#6

Sleeping problems oh yes.

Husband has these. He takes tablets but not clonazepam as they make him woozy and dozy next day. But he has other meds. He can go to sleep is staying asleep that is the problem. We have tried mindfulness and stretching  and that seems to work and is now sleeping better but still has a doze after lunch.

Wonder why your neurologist said no driving? Husband still drives, but not too often. Take care and just do as much as you can when you can. Stressing about it only makes symptoms worse.


#7

Thanks for replying. That is my problem I don't have any trouble falling asleep and as you say it is staying asleep that is the problem. If I feel really bad next day then I go to bed for an hour after lunch and that helps.

Is mindfulness a form of meditation?

My neurologist advised me not to drive because every now and then I have a feeling of drifting away as though i'm going to pass out. This is a very rare occurance. I think someone else on this forum mentioned that he had a similar thing. Nothing shows up with blood tests.

Best regards

Colin


#8

Aye aye Colin 

an awful lot of folk with PD seem to struggle with sleep some can't stay awake and others can't sleep very common with PD , nice dog pic you have there . Anyway welcome to the forum 

Ian 


#9

yes mindfulness is a bit like living here and now and not wishing your life away or as in husbands case his head has trouble switching off. It kind of grounds to you hear and now and just brings you back to the present. A lot is about breathing and I keep making him sit or lie down and listen to breathing excersies on the CD.

I hear listing to music or reading something light can help distract and then go back to sleep. Husband sleeps and rests till at least 5, then gets up and gets going but after lunch he will sleep for an hour. Whatever works for you is ok.


#10

Thanks SwissMiss I do listen to an MP3 player with sleep music but it doesn't seem to get me back to sleep. I too usually wake about 5 am sometimes earlier, I don't seem to have anything on my mind but used to get very anxious which I seem to have got over now. I will have to look into breathing exercises on the cd. I have just started to go and lie down for an hour after lunch. I suppose I will have to find my own level with this.

Colin


#11

Hi Ian

Thanks for welcoming me to the forum. It sounds as though the sleep problem is just something we have to cope with. The boy in the photo is Ross our Shetland Sheepdog we used to breed and show them. We just have 3 oldies now Ross is 9, his mum is 11 and grandma is 13.

Colin


#12

Hi Colin

           Im a newby here like yourself. My daughter always tells me off for having 'a nana nap' after lunch and since I cut that out I find my night sleep is better but not perfect.

John


#13

Aye Colin 

they are Bonnie dogs we had 2 doge years ago when we just got married we had a rough collie and a shelty we bought the rough one but the wee shelty was free as breeder couldn't show him he had an over shot jaw so we named him snooty . We were watching old footage of when we had filmed them of more than 25 years ago and never realised till we watched them just how much they barked gosh what a racket yet at the time we never noticed ,, anyway it's great to have a dog as there no called mans best friend  for nothing aw well enough o my rambling on take care Colin 

ian


#14

Hi Colin

 

The book and its CD is called Mindfulness: A practical guide to finding peace in a frantic world by Mark Williams.

Also Ruby Wax has book out and it is funny in places, but has no CD and the CD is helpful to guide you trough


#15

Thanks SwissMiss. Anything that might help is worth a try.

Regards

Colin

 


#16

Hi Ian

Shelties can certainly bark we have to fight them off as to who gets to the door first when they hear one of us say the postmans coming. They are very intellegent dogs and know the times of day when things need to happen eg. mealtime, walk time.

You take care as well

Colin

 


#17

Hi Smoggy

I don't sleep after about 5 am even if I don't have a nap. So when I'm feeling extra tired I go and lie down for an hour.

Regards

Colin