Hello to everyone


#1
Hello everyone

My name is Barbara and I was diagnosed in 2007. Since that time, I have tried to continue with my creative work butI am now experiencing severe switching off
sessions which are quite frightening. I hope by joining the forum I can learn more about other peoples'experiences with drugs, and also about how others manage to stay positive as symptoms worsen. Look forward to hearing from other members

#2
Hi I'm Jem47 I also was told I had pd in 2007 a week before my birthday and I s also had trouble with tablets . I try staying positive by take every thing day by day . finding something that I'm interested in which is art and craft it that's my mind of the pain .i also go to pd group which is a great help and you get to meet other people that has pd but we all have Parkinson's but we are all different and we all share the same thing . So I hope this helps you there is lots of good people on the forum which will help and talk so take care:smile:

#3
Welcome xxx Dont give up on youre creative work ,try and talk with youre pd doctor to find right medicine balance for you . Were all different in our symptoms and frame of mind ,but never let pd beat you !!! Im 42 had pd since 37 , yoga stretches keep me going and a lovely caring yoga teacher who is more detirmend than me in the fight against pd . Everyone is in a different pd stage but talk to someone , what do you do in the creative work?? Or am I too nosy xx

ponco xxx

#4
hi ya welcome to puk forum,im ali,been dx 12 years and im 43 years old.i try to keep positive by keeping me self busy as posible,i like to draw and paint and do knitting and read.i keep up to date with the forum and with puk website also,which i feel is important to do.i belong to a pd group which also helps me to keep my mind occupied ,lovley people to meet up with.if you dont belong to a group ,and there is one in your area ,i strongly advice you to join it.the help line here on puk can help you find out if there is one in your area,plus alsp give you advice on other things to.:smile:

#5
thank you everyone so much for your comments and suggestions, all very helpful. I have
been going to a monthly support group, where the people are very friendly, and run by a carer. I have asked for a session on drugs and it may be included on the pk awareness day next april.
At the end of nov my specialist is going to prescribe a slow release patch so I wondered if any members have also tried this?
I t is great to hear you are interested in the arts and crafts as well.I have trained in photography and ceramics, I use porcelain, and for the past two years i have been going to a great art class developing drawing, watercolour and inks.
It has been good socially,as we have a laugh together during the demonstrations.
I get about four or five hours sleep at night and get vey stiff so I do get some depression, feeling so tired but I am determined to keep up the creative ideas.!
Look forward to hearing about your own art and craft works and interests.

#6
Hi. I have been diagnosed with pd a month ago and am finding it very difficult to comes to terms with . I have a problem with my right arm and hand not doing what I want it to and a small tremor. I was put on rasagiline and helps a little. I'm not sure whether I should be avoiding any food or drink as I like the occasional glass of wine. I'm just 60 last week and I'm very young at heart and feeling very scared of the future. Also I can't seem to get to sleep if I do fall asleep I'm awake after about 2/3 hours and that is it some nights seem like non. Does anyone have any suggestions what I can take for my sleep problem as no sleep seems to make me worse.. Thank you

#7
Hi
Firstly; this may not be best medical advice but I do find a couple of glasses of red wine actually beneficial both mentally and controlling tremors .however if i overdo it everything gets worse!!! I don't suppose it has to be red wine; that's just what I like! A drink might help you sleep but too much will interfere with your sleep pattern.For me 2 glasses good, 4 bad, the jury is out on 3!But I have practised for some time.:laughing:Stress will not be helping of course and when you mentally adjust to the diagnosis it may settle a bit..

I did buy a great gadget from the catalogue of products for DEAF people (I'm not deaf but Dad is) It's called 'Sound Oasis' and plays special sounds on a timer suposedly to counteract tinnitus but works at sending me to sleep. I like the waves lapping on a beach but there are a dozen alternatives. It seems to calm my overactive brain down in a meditational sort of way.Even on the occasional night I don't sleep I seem to rest better.

My OH has had to move to another room; luckily we have a spare. I shake and jerk about all night even when asleep and it doesnt help for neither of us to sleep.. Saves me listening to him snoring though!

#8
hi smudge, i have very similar problems, although some of my poor sleep is due to bladder problem caused by PD, so i get up twice a night to pee. restricting fluid helps a lot with this. however i find if i go to bed down in the dumps or fretful about the future, i am guaranteed to sleep badly. If I think some positive thoughts, like about what is good in my life, sleep is better. A bad nights sleep also means a worse day following, especially with general slowness and forgetfulness.
lots of coffee and chewing gum counteract this feeling quite a bit.
i am going to try camomile tea, will let u know if it works or just makes me pee more...
good luck and stay hopeful for better treatments

#9
Hi Jakarta,

The Xmas before I was dx I developed an incessant urge to urinate. The doctor gave me Tolterodine (that may not be spelt exactly correctly) and it worked a treat, even after I stopped taking it and before I was dx and got meds. Worth a go.

#10
I have been reading the forum with interest since being diagnosed six months ago. I am 63 and have had symptons for about 3 years prior to confirmation.
I take 8mg Ropinirol daily and have found it a great help with my hand movement and general body ache which was very bad. Walking has become easier and a little faster too. I found my Neurologist most helpful and will be seeing her again this month. The words she spoke that are most imprinted on my memory were "there is no cure but new research is bringing us closer to a cure each day".
I have had the some of the listed side effects with the drug and now find sleep a big problem - just sleep in short bursts. I also have problems with my eyes which are light sensitive and the lid on the affected side has difficulty opening in the morning.
My husband has a sincere belief in alternative medicine and would prefer me to take herbal remedies which claim to "cure" Parkinsons. He is coming from a loving and supportive place and is against most conventional medicine. He is very anti the drug industry. I would be interested to hear from anyone who has had success with alternatives even though at the moment my heart tells me to follow the conventional route which I am. If there is anyone else with a partner with similar beliefs I should be grateful to hear of your experience.

#11
Hello everyone,

I have had PD for as long as I can remember, apparently I inherited it from my late Grandmother. The latest problem I am trying to overcome is feeling frightened and anxious, also recently my mobility has worsened, and I am not able to walk more than a few paces . This is the first time I have ever joined a forum and I am hoping to gain some Knowledge about my condition, and also make lots of new friends too. So I do hope everyone will welcome me to the forum.

#12
hi blue angle welcome to the pd forum .you will make friends and help on here .i find it very good as you can talk to people witch have pd and have some of the thing the same but we are all diffrent .i found it scary at frist but going to the parkinson group will help a lot . it will help becaues you can talk face to face as well . i here if you want to talk

#13
Hi ,Having had PD for about 30 years I thought I knew everything there was to know about it......WRONG! As I grow older and it still continues to progress new symptoms keep cropping up. For example, For no apparent reason, usually mid afternoon I get anxious and feel frightened. I usually have to just sit there and wait until it passes. I am by myself for most of the day because my husband is at work and there isn't anyone else to be with me. Sometimes a neighbour will come in , but to be honest I feel they are getting fed up of me, but then I don't think they understand, and why should they.Also not being able to walk more than a few steps doesn't help.If you, or anyone else has any advice ,I would really appreciate it. I do see a Parkinsons Specialist Nurse twice a year, and she is fantastic, but as most she has a lot of patients and her time is limited.Also, Being shy, I don't mix with a lot of other people. Sometimes I think my life would be a lot happier and easier if I had more friends, and I mean friends who don't desert you because you are having 'One of those days because of your PD!'If you, or anyone who happens to read this post can help I would be very grateful.

#14
Hello Blueangel,

My husband has had pd for thirty years too, I don't know what you are able to do and being disabled myself I know how times drags when you can't get out or do jobs in the house. After spending many years being housebound thankfully this no longer applies as I have an electric wheelchair (mine is a back condition) I realise you may not be able to use one, but do you like books or talking books or films as this is a good way of getting over bad patches, it might sound boring but it saves my sanity sometimes. Also some agencies do provide help be it a sitting service or helping you in the home, perhaps now is the time for you to have some personal help, do speak with a social worker or your support worker from pd as they may be able to come up with something to suit your needs.
I wish you all the very best
vivian

#15
Hi Blue Angel

As Vivian mentioned we have a UK-wide network of information and support workers (around 120) who can offer one-to-one information and emotional support to people with Parkinson's.

If you're not in touch with one yet you can find out if there is one near you at http://www.parkinsons.org.uk/isw

We also have a number of local groups for people affected by Parkinson's who can offer friendship and support. You can find your nearest group at http://www.parkinsons.org.uk/localgroups

Hope this is useful.

Best wishes
Dave, Digital team

#16
Hi Barbara Devon, One suggestion if you are having trouble sleeping is to try listening to music or . there are tapes or,cassettes which you can purchase to help you sleep. Mind you , having had PD for a long time i guess there are more modern products on the market now. For example MP3's which I am reliably told can be played on ipods, or, ipads.