Good morning all, I realise that this condition is progressive and that we are all different and yet the same but I wonder if anyone else seems to get a sudden decline.
i chug along quite ok but then I can suddenly drop in physical and mental function. Fatigue can be massive for me and I do try to pace myself I do have a busy life I am still working just about but then some days I just seem so much worse.
Today for example.....well let's start with last week I did extra work hours but tried to counteract that with more rest at home, I had a busy weekend at a family birthday party but I will say even before all this I was under par then I slipped getting out the bath resulting in a very painful right side rib pain which is on going......but now I feel completely wrecked.
I am so so tired my vision is blurry my balance is off my motivation has up and left and I am starting to feel a bit low and sorry for myself.
Yet there are times I am just as busy and don't end up in the state I am now.
As I said it feels like a sudden drop not a progressive decline am I expecting too much of myself? Maybe but these times scare me to death with the sudden realisation of what could be and I don't like it.
I too am having a bad time. My DBS seems to be doing zilch so I've booked another programming session. My medication is not lasting as long as it should. My muscles and joints hurt. My walking when unmedicated is dreadful. In the recent past, I could just about walk backwards and get about the house, I could even make a cup of coffee and carry it to my man cave. But not now. This has all happened recently.
And to cap it all, I have no one to give me a hug.
I'm sorry to hear that your symptoms have got worse recently and at a faster rate than normal. I think this is something that all PwP experience. I'm now 10 years post diagnosis and have had several of these episodes. I put them down to the coincidence of a number of things:
- depression;
- less exercise;
- constipation, the drugs work less well;
- an illness which has nothing to do with PD;
- your drugs needing increasing;
- an activity which has been increasingly difficult to do reaches a threshold that makes it impossible to do.
- your luck just isn't in at the time.
On the other hand, I have days when the sun is out, the wind is blowing me along, the drugs are working and I feel well.
i was not to good end aug ,my legs completely went ,freezing ,my nero put me on entacapone to make my meds last longer & this worked 100% then he also added rasagline & this knocked it out of the park never felt so better hardly any freezing ,no more falls & walking 99% .i have read a lot of comments on entacapone and all sound positive.hope this helps
I often find my self trying too find the limits of my own ability so i know what and where my limits are,In what ever activity, Perhaps we all do it?, Perhaps that is what it is and not so much a loss of function?, you might of found yours how it is for now, it may get better as Gus says above, allow Yourself a good portion of it just for you.
I was diagnosed with PD nearly five years ago and I can point to three step changes, relatively quickly. I chugged along with initial symptoms for about two years with a gradual increase in level of medication (Madopar). The first sudden change was a sudden increase in akynesia (freezing). The second - suddenly starting to get switch- offs, going from reasonably OK to a zombie like state within minutes, these lasting between half an hour and two hours. Sometimes I just work them off, sometimes I just give into them for a while. The third step was a sudden increase in Distonia, particularly the facial muscles that can be quite severe.
I have tried every agonist there is except one but cobeneldopa (Madopar) is the only drug I can get on with.
I can also relate to tiredness, but I'm approaching 78 so have to expect this.
It's strange but my Sister has the disease and her symptoms have simply got worse over that period, without any step changes. She's still chugging along. Mohammed Ali has been diagnosed for, I think, over 25 years. His symptoms have, from what I read been very gradual.
I have to mention stress, anxiety and anger, I find any of these bash my symptoms hard. Recently I was involved a dispute with a company that fleeced me. It affected my symptoms greatly for a few days.
Keep busy and good luck, you sound the kind of person who has a strong will.
Jules77
Sea angler, Please note the new photo. My magic mirror now says I'm now fairer in face than you.
Aha yes i see Jules and you are, I'm stuck with ole skate face lol owing too a bug in the system PUK seem unable or bothered too fix, unable too change the old fish face, I do have many fishy Photo's(1000's) but alas this platform doesn't allow us too see them beyond thee old postage stamp in full glory.
I do find it strange as PUK is host too the mervyn peake awards yet doesn't allow its members to fully be creative poetry yes, The Image no.
Apologies that the bug which doesn't allow users to change their own avatar hasn't been resolved yet, but we're still working with the developers to fix it.
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First of all a big thanks for your responses.....a BIG HUG to Peter.......Gus, I was diagnosed 9 years ago and my very first meds were Azilect (Rasagiline) now my prescription was altered from this particular make to another and I honestly do think this really has impacted not only on my physical state but also mood I did speak o my PD nurse and she has suggested I try to pin point the change and she will write to my GP in an attempt to get it changed back to Azilect make, personally I think it's the pharmacy that have altered it so I intend to go there today. PD nurse did say that usually you will plateau but this is my second month on this change and it's not getting better and I'm not going to wait til I see her on the 22nd of Feb.
Sea angler you are right I do need to give myself a break its not always easy to take your own advice....lol I'm pretty good at giving it out though
Jules ....I will stay strong my friend....just now and then I loose it a little.
so today I intend to talk to pharmacist and hope he takes on board what I'm saying fingers crossed....to me surely if I notice such a huge change it has to be taken into consideration and bugger the budget because that what it actually comes down to.
Hi, having read your comment I too feel like I have also had those real bad days sometimes weeks then I'm back on form again. It is really frustrating and I just don't know what sets them off. I feel sometimes like the progression of the PD is coming to soon for me. Can anyone tell me apart from the doctors who can I talk to about this?
I think we all have good and bad days. I find stress plays a huge part in deciding energy levels.
You could try talking to a neuro-psychologist, if there's one in your area. I was referred to one by my PD nurse and had 6 sessions of talking through 'stuff' with her. She was very helpful and suggested ways of coping, including practising Mindfulness, which I find works, when things get on top of me.
There's always loads of advice on here as well. Try and keep positive......they say doing things you enjoy, is the best medicine!
Sorry to hear of the bad patches you've been going through. Our Helpline service is also available to advise you about this and offer support. Please do call on 0808 800 0303. We are open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm. Hope this helps.
Hi newdidit - it seems to me that the pharmacist has put you onto a generic medication, these work out cheaper than the original medication you were presccribed. I have just been informed by my pharmacist that my next supply of meds will be altering to I assume a 'cheaper' sort. The only thing is they do not suit everyone and I was informed by someone that you may have to consult your neurologist to have the original meds reinstated if the generic ones don't agree with you. Hope you can get sorted, good luck!
if you kick up a big enough fuss at your gps they will not put you on generic all you have to say is you got the right balance of meds & you do not want to be at square one again ! they never try to change my meds no more ,last time the pharmacy tried to change my gabapentin to the crap ones ,i think they were quite shocked when i kicked off at them in a busy chemist & said you can give my repeat back & going to change chemist ( 14 ) different meds a month ,also was going to inform my gp that they were trying to change meds again ! they tried last time giving me co-caradopa instead of my sinemet .
Hi all, well I went to my usual chemist to pick up my prescription and in the bag was a generic rasagiline and not azilect as I had previously requested. So I took them out gave them back to the young girl and said these are not what I need I need azilect, I hasten to add I was very polite. Well they changed it with no problem but the pharmacist did point out that he was not sure he would need to look back but my prescription states just 'rasagiline' he said that at this present time both are the same cost but there will come a time when the price will drop and they will go for the cheaper option. He advised me that I need to speak to my GP to ensure he states Azilect on my script and not just rasagiline. To be fair I cannot for the life of me remember what has been written previously but I will be making an appointment with my GP to make sure that he will agree to change my script stating Azilect. Now fingers crossed I'm hoping I see an improvement after a period of time it's so difficult to pinpoint if the change in myself is due to this brand change I feel convinced that it does play a part despite being told over and over again that the active ingredient is the same. I have trawled through the Internet trying to find some sort of evidence and the only thing I came across was something to do with salts and I think if I have interpreted it correctly Azilect is made up with a myelete ( excuse spelling) while the generic is a tartrate, now this may just be part of the process I don't know and if someone does know I would love to hear any thoughts.
Cola is Cola, but we can all taste the difference. They tried peddling this generic lark with me and i Noticed the difference, I Wouldn't accept it, it is who they have the contract with 'teva' ect the van calls twice a day i live just 100 yrds from the practice surgery with pharmacy. What is the point of inventing & researching all these medicines if they are going too give 2nd best. you just take more, it costs more, for less effect or unwanted effect.
I watched the local news a day ago, the item was parkinsons sufferer's in Norfolk/Suffolk waiting too long over 18 weeks for speech therapy sessions, because PWP are choking & Aspiration of food items into the lungs, speech therapy is too combat speech/choking issues, kecia harris of parkinsons spoke up as did sufferers , the NHS dragging its heals declined too comment.
I love that first sentence because that sums it up so well cola is cola but it all taste different brilliant.... Thank you so much because I will use that without wishing to sound rude it is so simple but hits the nail right on the head.
you know even though I have worked for many many years in the NHS and currently for local council services I am becoming more and more bewildered with changes cuts and the disregard given to patients clients etc it is no longer client centred even if it argues it is without doubt the deciding factor is financial
