Medication


#1

hi

did people get given medication at first appt?

im still waiting on appt 17 sept and am worried that the neuro will send for scans and then make me wait for next appt to start things.

have tremor.gait problems,no arm swing ..all on L side plus pain generally. am off work and desperate to get back. stress of waiting is not helping 

also how much do you except as normal reaction to diagnosis or depression?

 

 


#2

Hi Kitten

I have had PD for 11 years and was devastated when I was first diagnosed.  I chose to stay off meds for as long as I could and my consultant said that was fine because my body would let me know when I should start, and it did.  Two years later I knew I needed some help with meds so went to consultant and started on meds.  Of course once you are on meds you don,t come off them  which is the down side.  But it is those that are helping me know.  I now take 18 tabs which is still quite a small amount to be taking.   

Stress and anxiety will make your pd symptoms worse.   I get extremely fed up at times especially when things go wrong, (which they have done lately),  (but not depressed).

I hope the above has helped you a bit.

Best wishes

wye

 


#3

thanks for reply

its affecting me in that struggling to walk any distance so feel need to start medication now. think have been ignoring symptoms for past 2 yrs ,mainly cos drs said nothing wrong other than old age and essential tremor

 


#4

 meant to add  .... waken every morning with internal tremor and overwhelming feeling of panic then tremor.

any ideas how to stop this

 


#5

I am 4 years diagnosed.   I went to 3 neuros.  2 of them thought starting drugs right away was the thing to do.  I took their advice and I am glad I did.  The drugs stopped the tremor almost immediately and I have remained tremor-free since then.  I now have an almost normal life.


#6

Thanks for reply , it actually gives me some hope

spoke to consultants sec she's looking each day for cancellation for me so keeping fingers crossed 

 


#7

Go for the drugs, kittens3! There's no need to suffer symptoms in the early stages. Restore what functionality you can now, and make the most of it.

Very best

Semele


#8

That's what I want , just concerned won't get them at first appt , don't want to have to wait any longer.

i want to get back to being active and busy again

 

 


#9

Kittens3 --

You are probably right about having had symptoms the past two years.  With hindsight, I realise I had PD five years before my diagnosis.  Now I have had it 17 years and am still leading a normal, independent life, thanks largely to drugs and exercise.  I am in complete agreement with the others who said you are right to start medication as soon as you can.  If you explain how strong your symptoms are and how much they are changing your daily life, surely the doctor will prescribe something to try to control those symptoms.

Best of luck,

J


#10

Been diagnosed said young onset (I'm 56) started on requip xl at 2mg  increasing by 2 mg each 1-2weeks till hit 10 mg 

feel better now I know. Hopefully will notice effect soon


#11

Hi kittens 3 . Hope you start feeling much better soon . I started the rasagaline the day after diagnosis and have been on them just over a week . I was given the option of delaying the start of medication but didn't see the point in that really as I have many symptoms and have for some time . A couple of people have asked why I'm limping so I've felt quite conscious when walking down the street . I have found these symptoms so frustrating . Have found it really difficult writing at work some times . They said the same to me about young onset - I'm 45 . The pd nurse told me the youngest person in the uk is an eight year old little boy . I had no idea a child could have it . Best wishes 


#12

Hi,

I had loads of similar issues, after being treated for a frozen shoulder for at least a year. My life was becoming extremely restrictive in what i was doing, and seemed to be doing less and less. After i was diagnosed, i started on madopar, after three months my life started to return and things got so much better, now two years down the line i am now doing things that i had given up on. my dosage has been stable.they tinkered with it in the beginning to get it right, but now i seen to be doing just fine.

One of my major challenges was waking early hours with trembles across my chest (which i'd had for years and my GP had treated for anxiety). This had been resolved with my last dosage being a slow release type.

ive continued to work (i am 54), although my writing is appalling and my arm and leg (funny enough)becomes painful after a short while. got my boss to buy me a tablet (Ipad), which i have got used to and is great. i spend most my time office based and i have made adjustments in my work which really help.

i used to get so tired in work, but again since the meds have kicked in this has gone away. i walked with a limp, which i continue to have good days and not so good days, my exercise helps (even though after exercise i tremble quite a bit). some days my swing returns to my arm, other days its not there. i have a sports massage every three weeks, which is deep muscle massage on my affected side. this works really well and i have seen significant improvements in my walking due to having and understanding clever sports therapist.

my dogs have never been walked so much...they don't seem to be complaining


#13

I agree my dog must think its Christmas! I'm making myself go to the park everyday no matter how much I'm shaking. Think today was abit better although slow and up hill is abit of a stagger  , my r hip doesn't feel too bad today .... Maybe requip xl is kicking in . I hope so

 

 


#14

Hi Richard good to hear you are doing well on the madapar and got your life back on track . Great that you are managing to work and have just made some adjustments . I work full time . I am managing ok at the moment . Walking is my main problem . I find I have to concentrate all the time on my right foot and try and walk very much heel to toe to stop seeming completely flat footed . It is worse when I'm tired and yesterday was bad but it was Friday ! I find it very difficult to write at times and unfortunately have to handwrite as I work in clinical practise and it is a legal requirement . Sometimes I print . Hopefully this will improve . Only taking the azilect at the moment . My hand feels a bit better not so numb and it has been very cold . Last winter I was wearing a glove indoors and running my hand under the tap to get it warm if I'd come in from outside . I have had problems for a few years but they thought it was a shoulder problem . I had steroidal injections nerve block physio pain clinic referral . They didn't think the leg problem was related to my arm . I know it's difficult to diagnose and despite my work background didn't ever think of it myself mainly I think because I'd never met a young person with it . I am striving to keep as positive as I can and carry on with my life as it is as much as I can . I am a very active person . My husband has always been a very positive person which helps . He has been great . I was having some osteopathy so may give that a whirl again . I have been referred for some physio too . Do you drive ? How's that been ? 


#15

I'm on Ropinirole. But seem to have problems with the 2mg tablets. My pharmisist  tells me it is had to get these tablets, I've run out once, and near running out agian.  Is there a problem nationwide?  Or just where I live (Wisbech, Cambs)?  Anyone know?


#16

Maddison, 

sorry for my late reply, i'm not on here very often. Yes i do still drive, and without any problems, my only reasoning being.... my PD is always worse when under stress (even watching an exciting football match can leave me mentally and physically exhausted, however, driving has always been a love of my life, and when i am behind the wheel i seem to relax and enjoy driving. i don't tend to have to drive much in built up areas and traffic jams etc don't really phase me. i've even gone back to riding a motorcycle as well !!

So driving is one of my  switch off moments in life, like the walk on the beach, the relaxing music etc. before i was diagnosed i was having terrible periods of tiredness, which obviously caused me problems, however, now on medication i am fine and quite often have driven on three hour journeys and feel fresh as a daisy. My wife would soon tell me if my driving deteriated, but she is still confident in my driving even though she drives as a typical bloke...i'm always first at the wheel !!

My Osteopath seems to work wonders with me, i visit now about every two months and a sports massage every three weeks, to be honest, i'm most probably fitter now than i was 15 years ago...

i use a cross trainer in the gym, my reasoning being my right side(my problem side) is forced into making the same movements as the left, but it still does not stop me having days where i walk as if i'm drunk ! which can be annoying as the next day i can walk as if i have no problems !!

i had problems with coldness but that has disappeared, mind you i was on an agonist at the time which did not agree with me. i've tried three and the side affects have been so bad ive had to come off them, but part of my side effects was being cold and also sweating !!! 

the 'keeping positive' is so important, i am a very positive guy, but i even get my down days...the 'why me' days i call them. but i like to think i now recognise them and i know things will get better, if i make them.

 i've been really lucky in that i've been able to forge a great relationship with my GP, he's young and relatively new and its so nice having someone who has the time to explain why my symptoms effect me the way they do and explain how my meds work, and he is so open to my thoughts and suggestions. for example, i was having problems waking about three am with the tremors, i suggested my last medication could be a controlled release, which he agreed and it works, he also recognises his own capabilities and will often seek advice from the Parkinson's clinic which i admire.

keep it going, and i hope your 'not good' days are few and far between ........

  


#17

Hi Richard thanks for your message . Really good to hear from you . I'm so pleased you are doing well . 

I am now taking ropinerole 8 mg , azilect 1 mg , vitamin d every day ( can't seem to get the vitamin d level up ) I have appointment at kings in August so see what neuro says then . Whenever I increase the agonist I do feel unwell really nauseous . Last time it took about three weeks before I could stop taking the domperidone . I have never felt so tired . I get in from work and I'm falling asleep . 

On the plus side my walking has improved . I am able to write again which does help at work ! My speech is not as slurred and I can think better although some days the words come out wrong and I have to think more about what I'm gonna say especially at work . 

Many main problem I suppose is pain in affected right leg and arm . It hurts when I drive so have only been driving short distances and take cocodamol and ibuprofen . I found out the other day I have torn my shoulder muscle so have been referred for surgical opinion as I have had the conservative treatments . Unsure about that though and doesn't help that I'm self employed and don't have anyone that could cover . I've had this problem for about four years and only just had scan . Maybe arm was weak and I've injured it easily .  

Trying to stay positive . Like you say it's so important . Some days I have felt really low I admit but a lot of it has been trying to come to terms with the diagnosis and sometimes friends and family response . I have worked hard and was able to open my own clinic two years ago and i have felt like it's all being taken away from me at times . Probably like everyone else on this forum . In the next breath I tell myself how lucky I am in lots of ways and think of all the positive things in my life 

We are going away for a week to Suffolk on sat so intend to do as much walking as I can . Have found my walking poles in loft so will take them too . 

Sorry for long post . Again great to hear from you . Best wishes Richard 


#18

Hi Maddison,

Nice to hear from you. Glad that some areas of your life seem to be improving,especially the walking. i am so conscious of my stride shortening, that when walking in remote areas i really stride out and take huge steps, my thinking is to stretch the tendons in my leg. (i know they have shortened and i just put it down to hitting my forties, like every other ache and pain i get!). not sure how funny i look but heh !!

interested in you using poles, i'm not at a stage where i think i need them ( maybe you are just using them as a walking aid and not for balance). How do you find them ? i tend to try and do things that push my PD, for example i am lucky to live by some great beaches and purposely go to the rocky/pebbly areas, in the hope of improving my balance. They are a real challenge.

why im writing , but have become distracted is back to the medication. Not sure if ive told you this (apologies if i repeat myself) but i am finding the connection between eating/diet and taking medication more and more important, i tend to eat smaller meals, big gaps between meds and meals, certain foods dont seem to go well with meds (some do, ) Alcohol plays hell with me !!(take away my soul, but leave me my alcohol), so i rarely drink now and if i do its limited. i know its all horses for courses, but theses are things you might want to try,

was wondering what work you do?, if you don't want to share on an open forum don't worry.

Anyway, im rambling here again, have a lovely break in Suffolk, (never been there myself), let me know how you get on.....

Can you send mail  directly on here? or is it only on an open forum ???

regards richard  


#19

Dear all,

I am recently diagnosed, but have found Sinemet transformative. I am less depressed, more energetic and the bad tremor is much improved. I am consciously exercising and have had some physio , partly because of shoulder problems. I was told I had essential tremor for years before diagnosis. It`s hard to get your head round all the implications, but keep busy.

All the best


#20

Hi Frances good to hear you are doing well on the sinemet . If you can get the symptoms under control it makes you feel so much better . To the point of almost forgetting we have this illness at times which can't be bad ! I take ropinerole 8 mg . Generally I am better than I was but I gather it's still a low dose . Not sure about increasing it too much because of the horror stories I've read with the ocd 's . Seeing neuro next month so see what he says . 

Trying to exercise as much as I can like yourself . Sometimes I've felt worse the next day tho and wondered if I've overdone it . I suppose it's striking a balance and the more you do the more dopamine you use and the more tablets you may need when we're trying to keep them to a minimum . Difficult . Best wishes