Back to top

clemmo

32 posts / 0 new
Last post
Clemmo
clemmo

Hello everyone,

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looking back it probably started a couple of years ago when I suddenly became very withdrawn for no apparent reason,I went from doing lots of voluntary work locally to not wanting to go out and everything became an effort, I had spent many years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.

Clemmo x

TeeHee

Hi,

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.

 

 

 

Clemmo

Hello,

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.

C x

TeeHee

Hi C,

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.

 

 

shefinn

 

 

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.....

All the best - Sheila

Clemmo

Hello,

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.

Once again thank you for being there

C x

TeeHee

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.  

Good luck, C xx

Twinks

Hi Clemmo,

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.

All the best,    Twinks.

Clemmo

Hi TeeHee,

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.

C xx

TeeHee

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!

Clemmo

Thanks Twinks,

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.

hopefully now I am on my way back

Thank you

C xx

Pages