Hello fellow members of Parkinson’s UK,
I’m Maggie, I originally became a member of Parkinson’s UK in 2015. I am a Parkinson’s sufferer, was diagnosed on my fiftieth birthday. I will be sixty-seven in November. At my diagnosis, and attendance of clinic, it became pretty obvious that I had been suffering from Parkinson’s from a young age. I had first visited my GP when I was in my mid thirties, I had severe pain in my legs and could see no obvious reason. I rarely ever visited my GP, but had attended ante natal and post natal clinics at the surgery.To cut a long, drawn out story short, I Visited GP a number of times one the years, pain in legs developed, plus other unexplainable ailments. Approaching my fiftieth birthday , I made an appointment to see my GP once again. At this time, I’ve been dealing with constant pain by self-relaxation, but I really needed an answer. My GP was not available, I saw a doctor I didn’t know, who didn’t know me. A few minutes into my examination, the lady doctor mentioned, very tactfully, Parkinson’s.I told her I was familiar with the disease as my maternal grandfather suffered with it. Once more, here’s the short version. Within a week from that appointment, I was at local hospital with an appointment to see a neurologist. Within minutes with the neurologist, I was told that without any doubt, I had Parkinson’s.
Sorry, this is supposed to be a short version of my history! Okay, to move on swiftly to 2015, became member of PUK, I read entries to the site more than I participated. Journey with PD, proved to be a roller coaster, but I was doing alright. My sixtieth birthday, fine, age is never been a worry to me. My health, the momentous change in my health for the worst was totally unexpected. Parkinson’s threw all he had at me, I was swamped, buried, wrecked beyond recognition. I do not have the words to describe the horror that I experienced.Life as I had known it stopped. I’m trying to regain something of my previous self. It’s difficult, scary, but I must try. Reintroducing myself to members of PUK is part of my journey towards improvement.
I envision myself reading articles, posts of interests to begin, then gently, with caution hopefully participate.
For those of you who persevered to the end of my ‘brief history’, thank you. Maggie
Hello fellow members of Parkinson’s UK,
Hi Maggie, I’ve only recently joined the forum, I have read more than I have participated, still getting my head and emotions into perspective but what I have found valuable is the support and well wishers who post on here. I am five weeks into meds and will hopefully ta review in a couple of weeks when I will have a firm diagnosis, I can relate to ‘losing myself’ and feel like I am getting back on track, an emotional time and reading your very inspirational post helps me more than you have realised, thank you for sharing, take care
Thank you AnaElsa, if I have helped one fellow Parkinson’s sufferer, my posts have been worth while. Welcome to the site, I know it’s not where you imagined you would be spending time. Life throws us off course at times, but ,with support, and good care, I’m sure you will find that life is nothing like you imagined it would become. I wish you well.
Hello AnaElsa, Thought I would drop in on you to see how you are since you first messaged me. I hope that you are taking each day in your stride and that you are not worrying about ‘what might be’. Become familiar with what help is out there. I found it best to have a notebook to list phone numbers, Specialist, Specialist nurse, hospital, chairperson of Parkinson’s local group, (should you join). Also I would list any questions about Parkinson’s that you would like answered. It’s very easy to forget. Keep a diary, one day you may notice something that hasn’t happened before, maybe feeling dizzy, or difficulty sleeping. Note them down, it all helps to get a picture of how Parkinson’s is for you. You no doubt have been told that Parkinson’s is different for every sufferer. We each have our own ‘pattern’ of the disease. I hope life is treating you well, and you are going forward with a positive attitude. My very best wishes.
Hi Maggie, thank you for your message, I’m a glass half full most of the time! I had a fall in March 18, problems followed,ended up with a frozen shoulder then suspected nerve damage, physio didn’t really help then other symptoms crept in, had surgery on my shoulder in Nov last year which turned out not to be as straight forward. Long story cut short after seeing neuro for suspected nerve damage - brachial plexus, we spoke about PD in May this year and I’m no I’m 53 and all this has happened since my fall ahh moment! I had a DAT scan and he’s started me on sinemet CR to see how my symptoms respond dopermine responsive? To be honest after the first couple of weeks I think the side effects have settled, still not getting much sleep ususally awake between 3 and 5 in a morning,like wide awake! The tremor in my hand isn’t too noticable but I am aware, a few dizzy spells and have only just started driving again after shoulder issue I just couldn’t drive so a little independance back which has been good, found having to rely on family and friends has been difficult and I’m not the most patient of people and get frustrated when I can’t do the simplest of tasks. It’s been a long journey to get to this point and still a shock to the system, expecting to have another appointment with neuro in a couple of weeks, he said he would review after 8 weeks and will then hopefully have a plan? I don’ t have a firm diagnosis but am expecting him to confirm this. I’ve just gone back into the office and am finding I get really tierd mid afternoon but not sleepy tierd, a couple of wobbly moments and walking into door frames! At my appointment in Aug when he started me on sinemet he said he may try me on ropinerole? I do feel a little more like my old self compared to this time last year but take each day as it comes. thank you for postingx
Great advice, @MaggieT!
Well done AnaElsa, you have a very clear, sensible and positive approach to the start of life with Parkinson’s. I realise that you are waiting for a definite diagnosis. Parkinson’s is diagnosed by medical assessment. When I first went to see a neurologist, he came out of his consulting room and looked towards the waiting area. He called out my name and watched me walk down the corridor. As soon as we were seated in his room, he told me that, without any doubt, I had Parkinson’s. From watching me rise from my chair and walking along the corridor was all it took. I had taken my time to stand from the chair and I had held onto the arms of the chair. I stood for a moment before walking, and when I walked my right arm remained straight at my side. I walked close to the corridor wall and put a hand out in front of me when walking through the doorway. I had ‘taught’ myself some motions to help myself, slowly rising from chair, holding arm of chair, moving from standing slowly, and putting my hand out when walking through doorway. I was unaware that I didn’t swing my right arm when walking. Apparently it’s a sure sign of Parkinson’s. I concentrate when moving, if I don’t, I may walk into something, open cupboard doors onto myself, trip or go off balance. That’s exhausting, constantly concentrating on what you are doing, where you are going. Of course over the months a lot more symptoms of Parkinson’s became clear. And boy, there were a lot of them.
You said you are taking one day at a time. That’s the best approach, you are learning and becoming accustomed to living with Parkinson’s. You could remain as you are for many years, then , you may experience a few other symptoms. Remember, your Parkinson’s is particular to you. Medication will help you, it may take a little while to find the medication best suited to you. Be patient, it can be frustrating as it takes a number of weeks before the medication begins to work.
I wish you all the best, remember, seek help if you need it, there are plenty of people you can call on. Remember to keep a Parkinson’s diary, that will help you and your neurologist/ specialist nurse a lot.
All the best from me.
Sounds like you have been through it and I am very sorry. It’s very positive that you are re introducing yourself (I have done the same thing today) I haven’t been on the forum since I was first diagnosed in 2016 at the age of 42. x
Hi Jo, welcome back to PUK. You have missed out on the same years as myself near enough. It is helpful to be able to find answers ,support, or just a friendly message. I think that you are a little like myself, in that I don’t want to submerge myself in ‘all things Parkinson’s’, so to speak. Yes, I do have Parkinson’s, but it’s not taken over my life (though, it very nearly did). PUK to me is a useful link, some weeks, I never drop in, other weeks, I may drop in daily. It’s there when needed, like a good friend. I also am a group member on FB of Parkinson’s UK -Community Group. There are a number of other groups on FB linked to Parkinson’s.
I’m attempting to regain my interests that were lost to be due to Parkinson’s non-motor symptoms. Depression brought apathy, and I went from someone who very rarely watched television as I was busily enjoying many interests, to someone who did nothing but sit before a television. I was unaware of what was showing on the screen as my concentration was nil, could say, I was nil, blank! A horrific time Jo that I would rather forget, only I mustn’t forget, as I don’t want to go there again. My whole journey of living with Parkinson’s is a long one, a rollercoaster of a journey. It’s been made all the more complicated by having been diagnosed with a rather nasty breast cancer. I am now in recovery following surgeries, and all post surgery treatment available. Parkinson’s caused problems with my cancer surgery, and treatments. All in all, what could go wrong, went wrong. Now a slow recovery. Sorry this is such a drear read for you Jo. I’ve been unlucky. I’ve always said, the only luck I ever have is bad luck. It’s true.
I hope that whatever medication you have been prescribed is helping you. Also, that you continue to enjoy life much as you always have. You may need to make a few adjustments, rest more maybe. You will find ways to help you along, maybe you will pick up some tips from fellow members of PUK.
I wish you well on your journey Jo. Feel free to message me. Best wishes from me.