Hi from Derby


#1
Hi im new to this forum, but have been dx some 3 yrs. Some nights & days stiffness seems to stay forever & nothing can be done. Thought i would see how others get on & deal with these problems. Normally i find a good sleep helps, but im full of cold so have been up most of night.Meeting & chatting with others is always a help i hope.

#2
hiya kes welcome to the forum ,im ali im 42 ive been dx for 11 years, sleep ,isay get it whist u can ,i dont no wot sleep is much now ,sorry dunna wont to put the dampners up you but it truth ,no poin fibbin bout things,stiffness isone of the main probs of pd,as im sure ur aware of by now,ifeel by tryin to keep movin as much as u can helps ,like isaid had it 11 years so bit harder for me,but hey still give it me all.i dont no how you feel bout keepin fit at all,and meetin people but ur gp can put u on a program for 3 months free to go to ur local gym and have one to one ,trained person nows wot to put u on and helps u through ur programe to help you at wot ever stage of pd ur at now,after 3 months u stay on but then pay 5 pound a week as many times as u like,but durin this time it not just a gym ,theres baths ,and sauner as well for relaxin,it helps me.anyway now i most prob rabbited for briton,it nice meetin u and hope to see u around the forum xx:smile:

#3
welcome.

basically you must spend time looking after you. If you are not used to being selfish, then you have to start. This is important because the better you feel the more able you will be to enjoy yuor family and friends.

Trial and error: learn what works with your drugs. Be "lazy". This one has taken me years to get.If you like PD lazy, which is just slower. Slow is good for you and can be very serene.

I have been ill for about 25 years and diagnosed "unusual Parkinsons" for about 11 years. My whole life ahs changed but I can stil be stroppy, lovable and me, just slower.

Keep talking, we are good listeners.

mrs.t.

#4
Hi kes. Greetings from Leicestershire.
I'm a 65 year old male. Dx nearly 4 years now. I can sympathise with you about the sleep problem. With me it's erratic. Sometimes I get a good nights sleep, sometimes I lie awake for hours. It helps if you can get as much physical exercise as you can. Be sure to tell your neuro or pd nurse all of your symptoms so they can find the right drugs for you.
Keep in touch. :wink:

#5
Hi Kes , welcome, you will find help & support here, tell us a bit more about yourself. i have been dx. nearly 3yrs i take azelect only at the moment, I am 68yrs old female and live in warwickshire. keep smiling:grin: regards marie
.

#6
This is the first time I have taken part in the "Forum". - Had to say how uplifting you all are ! (Although it seems very un - Christian to be grateful for people who are ill).
I have had symptoms now for over 3 years. I am, naturally very grateful for the medical help available, but it does appear to vary somewhat!
I live between two cities each with a hospital, but one quite large and the other relatively small. A friend of a friend, who was diagnosed with PD about the same time as me,goes to the small hospital and I go to the other. He sees a consultant every three months with a follow up with a PD nurse shortly afterwards.
My own appointments are every 6 to 7 months and a nurse has never been mentioned.
My GP suggests that my (busier) consultant would be getting more experience with his many patients and may be more helpful. I like and trust the man, but worry that help is not so readily available.
Does anyone have any thoughts on the subject?

#7
Hi Kes like the name
I dont sleep well I was dx last year and am realising to listen to the wise word of others on
the forum like ali and mrs t
I find swimming gym and sauna help me sleep BUT NOT TONIGHT:fearful:
All the best Adrian

#8
Thank you all for a warm welcome

I started answering 1 or 2 then realised its easier to do a post. I'm a 54 yr old female and I do try to keep exercising, walking is best I find. My pd nurse had to remind me to take more rests, but when I feel good I get carried away sometimes and then suffer the next day!I take 16 tablets a day, the levadopa based ones seem best, but on a stiffness day nothing seems to work effectively. So yes mrs t. I must learn to be lazy!

I slept well last night, bliss, but full of cold all day, ugh!

Regards Kes

#9
sleep! SLEEP!

Don't mention sleep. I haven't slept since Methuselah was a zzzzzzzzzzzzzzzzzzz