I'm 36 diagnosed with PD 4 months ago. I'm looking to chat with fellow sufferers of a simiar age, to get guidance, ideas and suggestions and share experiences.
Im coping fairly well but the pain, difficulty walking and sleeping is really draining.
Look forward to chatting
Hi, Im not a fellow sufferer but just wanted to wish you well
Welcome to the forum. I've just turned 46 and was diagnosed about 2 months ago. Like you it was pain which was my first symptom and as yet I've not had any treatment. Seeing my neuro in 2 weeks to discuss treatment plan. I find I need a siesta most days to cope with the after school schedule with my three children. Hoping it will be better when I stop work next week as my job is quite physical and I've been struggling for a while with pain and fatigue. Do you have family? They keep me going to be honest. Take care. Nici
Hi and welcome,I was diagnosed in December aged 39 although I'd been suffering for two years.now I'm on sinemet and ropinirole and fortunately not suffering their nasty side effects.
They've made a considerable improvement to my quality of life,I still have good and bad days and just take each day as it comes.
Hi Silverkins (Nici)
Siestas would be good :). I do get very tired, i think its because i sleep pretty bad due to stifness and pain. Ive had a bad few weeks, annoyingly, i think i need to up my medication again, as walking and movement in my right hand is getting worse.
I have a great husband that spends most of the time, cheering me up, asking how i feel and getting me moving.
Im still waiting for physio, paperwork going missing, and getting receptionists to fax accross info to the hospital. All very annoying.
I just wonder if i should be doing anything to improve my life, as i feel a bit older than i am, fed up of being tired, and generaly not really in the mood to do anything at the mo.
I was dx aged 30, I'm now 38.
I still work full time, but have changed to a different job.
I didnt take any meds for about the first 3 years. Now on a cocktail!
Best wishes xx
Im on Madopar, have no side affects that im aware of. Same as you good and bad days. Do you do any exercise, or follow any special diet/avoid certain foods.
Im still finding my feet, changing when i take my medication, with a meal or without. Im walking more, but not really doing any regular exercise plan, but im finding nothing really makes any difference to how i feel, im either having a bad day or good.
Special diet what's one of those.....I eat what I want if that's what you mean although I know that will have to change,I'm lucky that I don't have a big appetite anyway.
As for exercise I have a great dane so do plenty of walking and work in an abattoir so I'm always on the go lifting and carrying,although I'm not as fast or as strong physically as I was two years ago.
Personally I have a great network of family and friends who help me when I'm having a bad day and have a joke about my condition when I'm having a good day,I have found that being able to joke about having pd makes life a bit easier to get on with....
Now time for a coffee which I won't be making it have a nasty habit of spilling coffee granules all over the place
Hi Zoe, I hope you get the drugs and physio sorted soon. I'm due to see the physio after Easter too. Very lucky to have a multidisciplinary assessment and rehab unit in my local cottage hospital here in Tewkesbury, Gloucestershire. When I first went I was seen by dr, physio and nurse. If needed in future there are also OTs and speech therapists in the team. Is there an equivalent near you? The first time I saw the neuro physio she recommended purchasing trekking poles to help reinstate my arm swing and improve gait. Might be worth considering. Up until now my work and walking the dog has been my only exercise. After Easter when I've stopped work I'm going to give Zumba and Pilates a try. Never been big on the gym etc but love music and dance so hoping Zumba might suit. I think regular exercise can actually boost your energy levels so worth a try I figured. Nici x
It seems that i must be at a very busy hospital in Manchester. Everything is waiting list after waiting list.
I think i need to get motivated and find some time while working full time and doing some more exercise.
I'm hoping that the physio will help and give me some more ideas.
Thanks for your advice, i hope we continue to chat.
i love your humour about it all. i try most of the time to be light hearted, and i am mostly up beat. i try not to worry too much about the future. I just get frustrated sometimes, with aches and pains, and the right hand not doing as its told. All fun and games though ;)
I find it easier to laugh and joke about having PD but then I have always been the same.Unfortunately it doesn't get rid of the aches and pains,I used to suffer with a stiff neck and shoulder the sinemet seems to have eased this, now I suffer occasionally with these but suffer 95% of the time with a painful hip.
Thanks to a quick referral to the physios I'm hoping that this problem may be eased,or made bearable...all things considered I think I've got it easy it could have been a lot worse......as for the sleepless nights thank god I've got an xbox
I was diagnosed 15 months ago aged 36, I also attend a hospital in the Manchester area but fortunately have not had any problems with waiting, delays etc
It's taken the last 15 months to find the right combination of medication for me but I think I am finally there! (Madopar, Amantadine and Rasagiline). I've sorted out my problems sleeping (i hope)as this has been hard to deal with, especially with a full time job.
I just wanted to say keep your chin up! Like you at first I didn't want to do much and felt a lot older than my years. Its hard to be motivated when you are so tired all the time! Things do get better though
I'm 43 and been dx less than a week but I've had some symptoms such as loss of smell for 10 years or so, infact since before I even met my wife. Weird to think we all suffered for ages in one way or another before even being dx'd.
I'm with Andy on the sense of humour side of things, it helps me to ridicule Parky and make it all less scarey. It's not for everyone tho but being positive is.
I did an ipod playlist called 'songs to have a brain scan to' for my MRI and DatScans which made me laugh listening to 'where is my mind' by The Pixies followed by 'I can see through you' by The Horrors. I'm currently aiming to do Parky song list but not sorted it yet.
Music and laughter, all good medicine.
I had my first scan on a Sunday morning, and my mate joked about them putting some music on, like R2 love songs.
I laughed out loud when i heard the sutble tones of Steve Wright love songs playing in my ears. I wanted to say im not in my 50s here.
Sam - How did you beat the not sleeping, any suggestions. Im in a routine, careful about caffeine intake, and trying to wind down before i go to bed but still struggle to stay a sleep, and im not sure i remember how to lie in.
Also a question to all, im currently just on one type of medication Madopar, i know nothing about it, i just trusted the doctors that i needed to take it, so i do. Sam you say you're on Madopar, Amantadine and Rasagiline, is each medication i assume for different things?
Like you I trust what the neuro prescribed,fortunately I haven't suffered the side effects.
I also find sleepless nights a problem,dont have any problems going to sleep but most nights after approximately ten to fifteen minutes I'm up all night.
I'm now 45 diagnosed at 21. My issues are freezing and walking / basically all gait related. They are also very random even though I take the ROpinerole/ Amantadine and Simenet at the same time every day. I used to suffer from insomnia which drove me to distraction but I now take Clonazepam which gives me a full nights sleep and both my consultant and GP are happy with. People can be very judgemental but I am happy to be "addicted" to something that makes me sleep as I think that's perfectly normal!
I denied my Parkinsons for almost 20 years but have found great help in meeting other young onset sufferers in my home city of Norwich of which there seem to be very few but the ones I know have been of great help and have quickly become good friends.
dx at 32 2 years ago, still doing well on a small amount of madopar. Don't forget to check out supplements - there's a world of research on the net about PD and various vitamins and antioxidents.
Some of the ones I've found promising (either for help with symptoms or sound good for helping long-term) are vit B, vit D (get a test!), creatine and green tea extract.
and do some reading to fully appreciate the importance of exercise - it seems it's the single best thing we can do for ourselves. and when you've been for a swim or jog it feels really good to be "fighting back"
Hi Girlred (Zoe)
As far as I am aware the rasagiline is neuroprotective (hopefully will slow down the progression of the disease - dont think this is proven though), it didnt improve my symptoms at all. I started on amantadine partly to improve movement in my left hand (I had come off amatriptyline which had improved my hand greatly but i suffered with side effects) and also to combat the severe bouts of tiredness i was experiencing. The madopar was for my left hand and arm movement.
With regard to resolving my sleeping issues, i drink decaf tea from 6pm onwards, and make sure i take the madopar on time (8pm) however the main factor i think has been reducing my amantadine dose and this seems to have done the trick. However i did have problems staying asleep (always woke after 2 hours, then spent 5-6 hrs awake)before i took the amantadine so i think it was also related to being stressed. I now feel a lot better in general as I seem to have finally gotten the right combination of meds without problematic side effects and i think this is helping me sleep. I still wake in the night but go straight back to sleep. Sorry I know this probably doesn't help you much with your sleep issues!