I was so upset today to get the copy of a letter my consultant sent to my GP. In it he said "Walking relatively satisfactory", I can hardly walk! It's like dragging two ball and chains on my ankle. I...
/community/emoticons/nono.gif am finding the non-motor symptoms of PD bad! Smells (it has a name I've discovered) Fatigue Depression but mostly a major difficultly in organising my life (Executive...
I am on Mirapex and HATE it. Now I've started to have burning smells in my nose. Burning rubber or wheat bag left too long in microwave. It really is offensive. Also my eyes went all peculier wavy...
Very interested in your comment "...trained to assist you with walking" How do they do that and what does the Dog DO to help you walk Girlirish...
I am with my twin on this last day here in London. Both twin and I complained about that touchy feely guy and the manager said that he does it to all of them, meaning staff and that he also tended to...
I am here again in London with twin, back to the Lupus specialist. I had an AWFUL experience - he was a 'groper'. I was in the wheelchair and he took my head in a gentle arm lock and kissed me near...
My walking is now very slow and I walk with a stick but I'd love a dog.... Does anyone have ideas on combining walking with a stick and a dog for someone with Parkinson's? What breed of dog would be...
I have not posted for months and I was interested in this discussion. I am on Mirapex 1.25 (starting this dose as soon as I am brave enough) on the one lower at the moment. I am 54 diagnosed last...
I am Ann Ireland in England with twin sister! She has Parkinsons and I have come to see her neuro. I have a neuro in Ireland. I tested pos on the Dat scan for PD but both docs say no, I have not got...
With my twin sister GirlIrish in London who DOES have PD. Although I tested pos for PD I visited her neuro in Queens sq for a second time and this time was in the wheelchair. He said I did not have...
Thanks everyone. Today I had blood results back. My iron (ferritin) level is 15 the normal is 50+ So I'm now on iron tablets. Maybe that is why I feel so bad. Did I give up work just because of low...
Thank you all. I was so energetic up to a few years ago when I noticed a real slump in energy then the shakes started and now I find even the smallest task unsurmountable. I gave up work last week...
Still need help with this. Don't know whether its parky or meds or depression! Just have no energy, no 'get up & go' Still very tired. Any suggestions Girlirish...
Dear Stella, Thank you for your post. I don't know how you keep so positive! I went to the Parkinson's group yesterday and I came away even more depressed! The group is new in my area, 4 of us and a...
Trouble is, I'm not sure its doing ANY good. I don't see sufficient (any) benefit to keep me wanting to take it I just hate this whole situation. I don't want PD. I really want my motivation back! I...
Thanks Lux I really want to feel 'dynamic' again. I feel 'dead'. i am so utterly tired. Girlirish...
I shared with you before how Mirapex makes me very tired. Also about extreme apathy, no 'get up & go'. I really have very little motivation and don't know if it's Parkinson's, Parkinsons +...
Well you name several symptoms I've had, insomnia, overeating, computer all night!! Is Parcopa an agonist? Whats Carbo-levadopa? I think Mirapex HAS helped but I also think side effects too difficult...
are you saying the tiredness might get better and to persist? I will discuss with Doc Girlirish...
is it true that lack of Dopamine makes one un-motivated and apathetic. If so whats the remedy. I need to get so much done and I'm feeling like a lump of lard Girlirish...
I still feel horrible on Mirapex. Not sure what to do as I don't see consultant till september. Even my friends notice and say I am not as well as I was before going on it! I can't sleep at night and...
travel is an issue...I don't think non-pd people realise the exhaustion from PD and then the travel. I go home by boat & it only costs £38 but now I fly, cost £210 pounds. The boat & train takes all...
Thank you for your post. Mirapex is helping in some ways but not in a really FANTASTIC way! Maybe I had too high expectations. Lots of my problems are more subtle rather than shakes. Like insomnia,...
Dear Bear, I am in London and a member of the PD Society. What are YAPPERS how old do you have to be? I know what you mean about meeting others more progressed in the disease. That really frightens...
Good news! Having a great time raising funds for our local PD group. Today was given (to sell) an Apple Computer, An apple laptop, a dog carrier, a cat carrier, two golf clubs, and loads of videos....
Both myself & Twin have been Hypothyroid for about 10 years. Is there a link between these two conditions do you think? Girlirish...
I am now on 0.7mg three times a day and I hardly notice any difference. Perhaps a slight reduction in dystonia. But tremor still present and still feel excessivly tired all the time. I am wondering...
I suppose you are right Billy. My PD nurse said Mirapexin does not stop shakes and so I said "so why am I on it!" I will persist. I have a bad infection at the moment and perhaps I feel low...
I have really needed advice and support concerning using meds Mirapexin. (See thred Mirapexin & sleepiness). I thank the person who replied but 88 viewed my question. (Though a few more replied...
I think you are right in every way. Positive attitude is what we need....nertheless there will be bad times and here on healingwell those bad times CAN be discussed. I am sure that people here are...
Sleepiness continues. Though conference last week was resounding sucess & I gave a brilliant lecture! (even if I say so myself) This week was dreadful again (reaction) on Tuesday I had to leave...
I have multiple disabilities and now trying to find reasons why new presentations are occuring. I have a neuro-muscular disease yet to be determined and also Crohns disease. Lupus has been ruled out...
Well I am now in week 5 (o.7mg) and feel just awful. I am breathless, and feel at times like fainting. THe PD society nurse reckons its hypotension. My GP wants me to press on. I hate this drug. I am...
have decided to drop down to week four meds level. Could not take week five level on mirapexin. I feel really ill. As if I'm going to faint, crap or vomit. I have waves of sheer awfulness pass...
prune juice seems hopeful + senokot. Girlirish...
Yesterday flattened with exhaustion, awful pain and burning sensations in legs and palms of hands. Pains ran all round my body and spent most of the day in bed or bath. Too tired to do anything and...
We are 54 years old. Both having difficulties & both started all this almost the same time! Ann Ireland...
Thanks Ed. I really not sure if answers will be very fast in coming but right now I am less 'losing' it as I was in Dublin. I am beginning to thaw out mentally and its lovely to see twin. She is...
Saw my twinsister's neuro who was fascinated with the two of us. Says my twin is quite simply a case of Parkinsons as she is presenting with the usual symptoms but finds me a complete mystery. He...
I feel I'm perhaps posting too much on healing well but still in early days with loads of questions. Now on 4th week of Mirapexin and just cannot get constipation sorted. Tried lots of stuff! Really...
Well I am now 54 and worked as a trainer of social workers in Disability & Abuse! I had to consider my options recently and have opted for retirement on disability grounds. I do not have major...
Hi there, I feel so much less depressed now that I am with twin and am staying an extra week. I went to the Lupus Centre yesterday and saw a lovely doctor who says that something is very wrong with...
I am sorry you are going through this. Does your last post mean you've had a stroke and don't have parkinsons?! Even if you have PD be assured that all the panic and fears and tears DO settle to...
Now on week four and don't notice very much change to be honest. Maybe just a little less tremor & stiffness. Not much to think "isn't this wonderful" and the tiredness is just excruciating. I...
You may both notice that Ann Ireland is my twin sister (I'm girlirish). It looks like we BOTH have Parkinson's. How weird is that!? AS you may remember I had a terrible time with the diagnosis but am...
Thanks for your posts. I shall hope for the same as Ed. That the sleepiness wears off over time! Isn't it somewhat bizarre that Mirapexin causes sleepiness yet you can have insomnia? My sleep is all...
I took my first dose of week two on Mirapexin today (it is increased now) and I emediately felt so tired needed to crawl to bed...and I slept! Does this wear off over time because it's horrible!...
Yes...she is my twin! She has Chronns & possibly Lupus. She has dystonia & shakes of unknown cause. Had DAT scan waiting for results. we are a right pair! Girlirish...
/community/emoticons/smile.gif Just an update for you all. started Mirapexin and on very low (first week) dose. I'll increase slowly. I was surprised how emotionally battered I felt the day I...
I am deaf & wear two hearing aids. I can use Sign Language though I don't as I have perfect speech. However I'm due to meet a Deaf Signing man soon and realise my left hand cannot sign! now I'm...