Hi
I’m a 45 year old female who was diagnosed in 2012 with Parkinson’s disease. Everything had been fine until dec2020 when I became tired but went about my every day routine eg driving, walking , housework and cooking without any bother. Since January 4th 2021 things have dramatically changed I woke up to find I could hardly move and needed the assistance of my husband to get me out of bed take my hands to help me get to the bathroom. It’s like a flick of a switch my medication co-careldopa 25mg/100 which I took 8 in a day I am now taking 12 tablets. 2x6am/ 2x10am / 2x2pm /2x6pm /2x10pm /2x1.30am every four hours taken are only lasting a total of 1 hour and 45 mins and that’s if the tablet takes affect if it doesn’t work that’s me sitting with a tremor and cramping in feet for 4 hours until I take my next set of medication it’s been absolute hell!!!
We are now in November and this is still ongoing. We have not had been offered any scans which I think we should have as to have some kind of investigation why this has happened so dramatically.
I have spoken to nurse and seen consultant once and have had numerous different tablets given to me.
Slow release, selegiline & patch which every one has made condition even worse to the point where I can only imagine that it would be like taking a stroke. This is a cry for help to see if anybody has had a similar experience of this and could help me get my life back.
Many thanks hope someone can advice with some help as I feel as though I have been abandoned by the so called experts.
Hi Lynn,
We just wanted to take a moment to welcome you to the forum, and make sure you are aware of the resources available to you here. Getting medication right can be quite difficult, as you’re sure to hear from other forum members, and it can take some time. In addition to communicating all changes to your GP and Parkinson’s team, we would suggest having a look at our website, where you will find information and support as well as previous forum discussions on the subject. This page would be a good starting point, we think. And we also have a free and confidential helpline at 0808 800 0303 staffed with advisers who can offer a wide range of support, from medical advice to stress relief to finding local resources to help. We hope you’ll take advantage of these tools as you get to know our lovely and supportive forum community.
Wishing you and your family the best during this difficult time,
Jason
Moderation Team
Hi Lynn, sorry to read you’re in a bad way at the moment.
This article might be of interest - it describes similar things, (and leading to further trouble) -
My Hospitalization with Parkinson’s Disease — Out-Thinking Parkinson’s (outthinkingparkinsons.com)
Actually, most of the website is interesting. There are some things I disagree with, but overall it’s helped me to decide an approach.
Thank you for the information. Will read through and hope there is an answer or suggestion I can speak to my consultant about.
Many thanks again
hi Lynn 76 I was diagnosed with PD 2010 and like you I have not had many systems of PD but since lockdown, my system have changed dramatically, I now use a walking aid as I have had 2 falls one was face to face with a concreat slab, ended up in AA at lacal hospital. When I walk i feel as though I am on board a ship, or have had one too many. It did not help when my PD nurse retired as she had been with me from the start, So a new nurse was allocated to me. Going back to PD I found that my right foot/leg are not doing as they are told, so my right foot drags and this is why I fall, I too am vary stiff when getting out of a chair/bed if fact very stiff every, time I move. Also I find that if I am tired these symtons are worse. I am not to bad when indoors, but going into town takes a lot of planning. At the moment I am having phsio is it doing any good ? as yet the jury is still out. It is one of the conditions that comes with PD I don’t like it but you have to accept it. When I have a problem eg llike shopping at the supermarket I still want my independence and want to do my own shopping by myself, so hubby sits in he car while I take a trolly to lean on and the trolly is a bit like a comfort blanket.
Its the same when I get to the checkout, the girl will whip the shopping though, before you can blink. So I have learnt to use this to my advantage, First I ask the young girl to help me pack my shopping, then I turn around and if there are people waiting I just say ““I’m so sorry to take so long but you see I have Parkinson’s and it’s not all about a tremor”” it works wonders. It is a long time
since my last post but I have an appointment with my nurse on 6th Dec, I will tell her all about my change and will post what she has to say.
Watch this space!!!
I love the fact that you tell people that you have Parkinsons, my husband very reluctantly uses a rolator to get around and only because he is afraid that he will fall into the road if he falls when out and he certainly wouldn’t tell people that he has Parkinsons. Me, I am not proud, I have Myasthenia Gravis and I wear a medic alert bracelet and I have a sunflower lanyard for hidden disabilities and I use a mobility scooter as I can only walk short distances without exhausting myself. Take all the help you can get and continue to let people know because they need to realise how parkinsons can affect people. BTW if you shop from Amazon at all you can add a charity to your account and they will donate as you shop.
Does any young Parkinson’s out there only get about less than 2 hours out of their co careldopa 25/100 ? My consultant says this is common in young Parkinson’s but I’ve not yet heard anyone else having this problem and is there anything that can be given to help tablets last longer to help lead a normal life?.
Many thanks