Hello my name is Norrie i was diagnosed with parkinsons a few years ago,
my speech was slured and i used to drag my leg, now its a short shuffle,
the parkinsons nurse said she can see an improvrment because of my medication,
but in other ways i dont, does enyoneone else feel the same?
The symptoms you mention are learned skills which we lose with the loss of dopamine and so - this is an unqualified opinion - we should be able to correct at least some of them once the meds. kick in if they don't correct themselves, e.g. my funny walk (a feeling in my feet which I could feel but was not noticeable to others) corrected itself but my stiff sore hips, caused by overdoing the walking on stiff hips thinking I was fighting old age, needed a steroid injections to see the soreness/inflamation off.
Upon diagnosis for PD patients various things are supposed to happen according to the official NCIS guidelines. One of them is physiotherapy with the aim of achieving the best movement function amongst other things. I can't however, say I was very impressed with my experience but I hear good things from others on this forum and to be fair I was doing most of the things they would recommend such as exercise and yoga (or similar) for stretching the muscles and so once I got the meds (sinemet) I was soon back to normal for a good few years I hope. I also took up Nordic walking (the sort with two poles) because it helps to lengthen the stride, exercises the whole body, helps with balance and makes you stand more upright when walking with the poles.
As others will confirm, for some people it takes varying times for the right meds to be worked out and take effect. I have been very lucky with how I have reacted
but I do also think that even very modest amounts of exercise if done regularly will help to offset the effects of the disease.
Hi Norrie, my advice would be not to rely on medication alone to offer improvements, but supplement it with practising walking and maybe request speech therapy to help there too, if you have lost these skills for a while it may mean that even if meds are helping you need to remind your body what it should be doing. But equally if you don't feel enough improvement you may need more meds. Also meds won't re-build up strength in muscles that have not worked for a while, which is why it's important to work it yourself. At least, I found the two-pronged approach to be the best although my aim was also to keep my meds at the lowest they needed to be, whilst getting a decent result.
You are right... i think im not taking enough exercise i feel so unfit,
but i sleep during the day which feels like an hour.. but i've only
dropped off for maybe 5 minutes or so, but
feel better for it.
instead of walking to places i'd rather take a taxi.
but i also feel ambarest the way i walk which does not help.
Hi Norrie I drop off sometimes just overwhelmed by tiredness and like you say 5 mins or so see's me ok I've only been on DA's for 15mnths and I would wish the control was better my tremor still pretty bad, but exercise and a general determination help me through. I had to force myself with exercise to begin with and still do to some extent its finding wot works for you i swim, do physio exercises and walk dog - so have a go
Hi Norrie, honestly i know it's easy to say but don't worry too much about your fitness level, more about getting the movement right, which you need meds at the right levels for, but then you practice to enhance muscle memory, build up strength, etc. I am lucky as i live in a region with loads of safe and quiet coastal areas so i was happy going on my own in the evenigns to practice walking. I had to go alone because I had to concentrate fully - I couldn't talk AND walk until i had really got used to being able to walk again. You know, the thing about being embarrassed is really hard. But when I had a severe limp and looked very odd walking, I thought, well if I saw me walking, yes I might glance at me because it's different and hard not to, but I'd also not stare, and I'd think that person was actually rather tough to be getting about with such difficulty, I'd think good on 'em, or, crikey that must be hard. Interesting, i had a bad limp for two years and not one person ever said anything inappropriate to me about it. But when the meds began to work then I could walk normally - but to start with, only if I looked at my feet - because if any tiny thing distracted me i would literally have to stop walking. And I kept having to stop anyway because I'd lose the flow I was so unused to it. I did 100 steps non-stop one day and was so chuffed. But within 2 weeks of appearing normal but having to keep stopping for no apparent reason - two people made idiot comments to me. Because they could no longer see what was wrong, they thougth I guess that 'I was wierd' why would anyone keep stopping walking etc. I couldn't have cared less because i knew i was improving!
Forgive me for a bit of a ramble but I wanted to encourage you. Supplementing meds with your own efforts helps improve the brains' plasticity which is it's ability to learn or relearn stuff, and us parkies really need that. I truly beleive I would not be as able as i am at present if I had not done all that walking practice, nor could i have done it without medication. It's worth a try and it definately will not do you any harm, and the other thing is it helps you feel more in control rather than PD being in control.
The worst thing..feel is walking passed crowded bus stops
or teenagers, i find myself going different routes,
maybe its the medication that is making a wee bit paranoid.
i dont have a noticeable tremor,
the best i can describe it as a tumble dryer next door very faint
i feel the house slightly shaking,
would other people agree?
I recognise so well your reluctance to pass by groups of people. And yes, teenagers do seem to find it clever and funny to comment upon the appearance / gait of others that might seem a little odd. It can be upsetting. I too, when I was able to walk about a bit more, used to take some tortuous routes to avoid routes to avoid people.
Then I realised a few things - a diagnosis of pd is nothing to be ashamed of. Most people take absolutely no notice of people they do not know, and any impression they might assume of what is is "wrong" does not bother them for long. It is of no consequence to me if an unknown stranger assumes I am drunk!
Also, I have some really good memories of the kindness of strangers. One lady , noticing that I had "frozen" whilst waiting in a PO queue, waited outside for me and offered me a lift home, which I gratefully accepted. A group of "hoodies" aged I would guess about 16-18, noticing that I seemed to have difficulty moving, walked with me to the end of my lane. They asked Q's about what was "up with me", but not in an offensive way.
I think that what I am trying to say is that is not necessary to be self-concious or to avoid people
I wish you all the best
I find the pub a good place to practise social interaction. It’s particularly interesting to observe people who, for their own fault, are in a worse state than me. Buses are mostly empty and the final walk home is in the dark so I can go at my own pace. My friends, who know I have PD, will always take the top half of my pint, to avoid spillage!
Have a good weeeek