I am new to the forum and it has taken me a while (as I am a bit of a techno numpty) to work out how to do this.
I am a 70 year old lady who has recently been diagnosed, but reading some of your story's I realise I have probably had it for sometime before the tremors and impossible to read writing appeared.
Reading what you have to say has been a breath of fresh air as I was wondering how I could have a good day and the next daybe completely polaxed.
looking back it probably started a couple of years ago when I suddenly became very withdrawn for no apparent reason,I went from doing lots of voluntary work locally to not wanting to go out and everything became an effort, I had spent many years running a support group for people with auto immune conditions and attending meetings at my local hospital as a patient representative, and one by one I have backed away from them all.
The medication I was given I couldn't tolerate and have to wait 4 weeks before they try something different I am having problems with extreme fatigue and lack of general strength I have lost my sense of taste and some days have tremors all over but thank fully they don't last long but just leave me feeling exhausted.
This has been the first time after reading your story's that I feel much more positive thank you all so much.
I wonder if you are like me, felt really down before diagnosis and previously realised had bouts of depression. The dark clouds do not linger too long as a great site, laughs and posts that uplift and show how positive(most of the time) we all are, some incredibly brave. Might be worth talking to your gp about this, seems a shame that people are missing out on your kindness and dedication to good causes.
Keep posting, just join in on a few threads when you are ready or just read and enjoy.
Thank you so much for replying, I am looking forward to being part of what seems a very friendly site, and as you say everyone is so positive, Will the medication when I finally get one I can tolerate help the symptoms?, most of them I can cope with but the loss of strength and extreme weakness at times is awful.
This is only my personal view but over the 9 yrs I have since being diagnosed felt tired washed out so now if I want to do something rest the day before. If I feel exhausted have a short nap try not to do what you used to do, just listen to your own body.
Medication is like a set of weighing scales on one side better movement the other possible side effects but everyone is different. stretching excercises seem good parkinsons uk do a dvd of excercises, medication trial and error , take whats best for you. There is also a pduk helpline where you can ask for a pdnurse to discuss your concerns, or just support.
Just remember you are till the same person a little slower, keep up your hobbies just give yourself time to recover, think of yourself as a battery and don't forget to recharge.
Hi Clemmo - Welcome to the forum! TeeHee has passed on some good advice to you, I have had PD the same amount of time, around 9yrs, and you learn to understand your body and pace your life out accordingly without having to give up on your social life which to I have to say is vital to your inner self and wellbeing. Stay focused and don't give up.....
Thank you both for your very sound advice, I really should know better, 18 years ago I was diagnosed with Sjogren's Syndrome and Pallindromic RA and on the day of diagnosis as there was no cure I made my mind up that from that day on I wouldn't let it change my life and I would take charge of it and not let it ruin my life, so why I have let this get to me I do not know,
I suspect I am going to have to live with it without medication as my Immune system is very intolerant of most medication, I am unable to have any Analgesia apart form Paracetamol and then I can only take one two bring me out in a rash and itching all over.
C , keep trying different meds and keep discussing the possible options. Its tough for you I can see that but you have won many battles this another one.
We all need time out on the sidelines but you are a strong fighter with battle experience.
C'mon C, you go girl! get them batteries recharged then see whats out there, not always meds but massage look at alternative therapies as well.
Ask about feeling a little down pd can alter chemicals in the brain , the feel good ones, like dopamine.
Agree with what Sheffin and TeeHee say.......try and stay positive. I am 68 and take Eldepryl 10mg. once a day and Madopar 100mg/25mg. capsules 4 times a day, interspersed with dispersible Madopar 50mg/12.5mg. tablets 3 or 4 times a day. This combo seems to work for me and I have no side effects and generally feel quite 'normal', whatever that might be! Be a bit wary of being offered Ropinirole, as many people react badly, although it suits some. You have a lot to cope with, so sometimes it must be hard to keep a sense of humour, but it does help! You need a good chat with a neurologist or PD nurse. It took me over a year to come to terms with my diagnosis.
What a truly positive person you are, you have made me sit back and take a look at myself and give myself a good talking to, I have spent the last 15 years telling people at my support group exactly what you said to me they all have LTCC and really need to be positive, and here I was dwelling on myself. thank you for the wake up call.. I have always been a great believer in not worrying about the things you can't change and having the courage to change the things you can and move on.
So Batteries are on charge and hopefully I will soon be ready to go.
Thanks C, just getting back to positive again after some timeon the sidelines myself. Its important not to beat yourself up if feeling a little down, its what makes us honest and human.
But that said its pick yourself up and away we go. Look on battle briefing posts we are looking for new recruits , feel free to join in or should I say join up!
Am I glad I found this site, I was floundering but you have all already helped me . I think that is what I was finding difficult I didn't recognise the person I had become, I am usually the first off the grid, but I got lost along the way somewhere.
Re your advice about alternative therapies I am looking into that, I used to have a reflexology and accupuncture, but 3 years ago I was diagnosed with Paroxysmal Atrial Fibrillation (PAF) and am on an anti-coagulant and a beta blocker to keep it under control, so I will have to ask the practitioner if she is prepared to do it, I have heard it is good for both, that is another reason they are finding it difficult to find the correct meds for my pd as many of them are contraindicated with the anti-coagulant,
I must sound like and accident looking for somewhere to happen, but i am much more positive today and have actually done some house work.
Me again Clemmo. I also am on an anti-coagulant, Apixaban, for Atrial Fibrillation (acute), which is compatible with the meds I mentioned before. As for alternative ways of dealing with Parkinson's, I find having a back massage every 2 weeks, helps. I have also tried taking Mucuna Pruriens, which is a natural form of Levadopa, which has been used in India for centuries. And Chia seeds are great for constipation and cramps and general health. I find that doing my own research and chatting to people on the Forum, is the way forward for me, as Parkinson's affects us all so differently, as do the medications prescribed. I believe that I know my own body and mind, better than anyone else and therefore listen to what it tells me!
I couldn't agree more,and will look into the things you suggest as you say no one knows our bodies as well as us and we are all different and react differently to meds, I am on Rivaroxaban and bisoporol I couldn't have Apixaban because of my weight, I got a call yesterday from the community PD team was on the phone for an hour and have an appointment with the pd nurse early September. so things are moving on.
I've only been visiting this site for a few months myself but do find it helps me cheer up. I was PD diagnosed last year at 62/3 yrs but realise I have had it quite a while. Accepting the diagnosis was the most difficult bit as I had to accept life would never be quite the same but then I eventually realised I was still exactly the same person I was the day before the diagnosis. It was just that now I knew what was wrong and had an explanation for all the silly little symptoms that had been bothering me - it had never occurred to me that they may be connected, even though the tremor had made me wonder about PD
Yes it is a big nuisance that I have to live with this. But some wise person told me to focus on what you can do, not what you can't do - that works most of the time for me. So when I'm tired and the batteries need recharging I try not to think about how much I used to do but remember that after a bit of a break/rest I'll probably be ready to go again.
Diagnosis it a huge shock and it takes time to come back down to earth, so give yourself time. Good Luck Daffy
Yes as you say I also kind of new I probably had PD especially when the tremor started and my hand writing became illegible which made the voluntary work I was doing difficult as I used to take the minutes in some of the meetings I attended, but as you say it was some of the symptoms that I didn't attribute to it that was confusing but I now realise as you do I have had it for some time, once I got the diagnosis my husband then chipped in with all the things he had noticed but hadn't said anything for fear of getting his head bitten off !!!!!!!!
I am just hoping that the medication when I finally get it will help some of the symptoms like fatigue and general weakness. Wise words indeed to focus on what you can do not what you can't I am finding that a bit hard at the moment, I know its the right way to go but, in my efforts to not let it beat me haven't quite got the balance right yet.
In a way the pd diagnosis was a bit of a relief as they kept testing me for all sorts of different things that kept coming back border line (and they don't treat border line) in the end it was the RA nurse I was seeing that picked up on it, and without saying what she thought it was recommended I asked to see a neurologist and the rest is history.
I am sorry to hear you also suffer from Afib not very pleasant, I was reading the other day about the Vagus nerve that controls your gut heart and lungs and if it is not functioning properly causes all sorts of problems. then the gastro consultant I saw a couple of weeks ago told me that recent research had discovered a connection with the gut and PD. apparently some scientists in Denmark are trialling a kind of pace maker for the vagus nerve and are using it on patients with severe RA and so far it is proving to be a success,
Just a bit of useless info really, but interesting non the less. apparently without the vagus nerve we would not survive.
Yes, I've been reading about that. There's a whole train of thought connecting PD with the gut and the bacteria within. There's got to be different reasons for the different types of Parkinson's, I should have thought? I have idiopathic Parkinson's, but don't have a tremor or rigidity.....just slowness of movement on my right side. I'm finding that Madopar controls this quite well and my movement and handwriting is normal again!
