New to all this, a little lost in the middle

#1
#2

Hi to all out there.

Recently diagnosed, investigated since Nov 17 and confirmed two weeks ago. on low dose meds now trying to keep active off work since Oct  also told not to drive.  Big life changer at just turned 53. Appreciate many far worse off than me, not early onset at all but also not elderly - constantly told "oh dear - youre a bit young for that!"

PD UK very helpful and family suppotive too.

many questions  - what do i do until next consultants app in June beyond taking meds. No nurse or physio yet.  Hopefully phased return to the chalk face after Easter  . . . . anyway keeping active as far as poss - wont start boring veryone with symptoms !!

Thank you if you have taken the time to read this.

Now im in hopefully talk again

 

#3
I was 36 when dx ,symptoms can be very different some may have very little and some very aggressive as mine but under control now keeping fit is a main key and pduk are brilliant when comes to claiming benefits always get iñ touch with your local pd support worker. You can find every body has some good knowledge on this site stay strong.
#4

Check with your .gp as you may be able to get referred to a physio always best to start with correct exercises as soon as possible. might be able to self refer for physio check varies on area.  Look for PD warrior on net for advice in meantime , on you Tube as well.

Have to report condition to dvla for assessment, not sure why told not to drive but can change once meds settled down

Ask work for a workplace assessment to ensure reasonable steps are taken to assist you remain in emloyment as long as you are able to.   If not in an union may be time to join one. It's a waiting game but might be worth finding out who your pd nurse is and giving her a call asking for an appt,  

I guess chalk face means teacher ? a few on here so you will get lots of support.  I and several others diagnosed late 40s, some younger not on your own there either. 

Hope some of ramblings helpful , and welcome 

#5

Hi I was diagnosed three and a half years ago aged 55.

I am now 58 and still not settled on meds hopefully this time as meds increased again

i agree with TeeHee abot workplace assessment. And Pd nurse

i am waiting for word about physio and speech therapist.Must be a big list where I live as feel i have been waiting ages.

Hoping all goes well with you.

Take Care xx 

#6

I was diagnosed in 1999. Started on meds 2001 (mirapexin) and on levodopa(sinemet) in 2006. Parkinson's is now starting to affect my quality of life and becomes more difficult to handle  both physically and mentally. My total daily levodopa intake is substantial (1000mg), but it is still the most effective drug, my wonder pill.

From the start I have searched the web for as much sound info as I could find on reliable websites. I am a firm believer in the importance of the patient, medically trained or not,  knowing all aspects of the disease they can understand. Maybe this is arrogant, but I see myself as the executive director of a team (GP, neurologist, Parkinson nurse,physio,etc,) . the final decision(s) are mainly up to me to make. I will have to live with the consequences of any decision about my medication (efficacy, side effects,etc.) This is especially important with PD, as the treatment is symptom based, there is no cure yet. and no point in taking drugs that do not address the bothersome PD symptoms You will have come across the phrase : "all Parkies are different", or similar. That is largely true and getting only 10 (TEN) minutes consultation time (this is at the hospital I go to)  once in a blue moon (every 8 months or more) to assess a patient , whose speech might be badly affected as well as their mind, is stressful for both patient and consultant and will never address sufficient aspects of this complicated disease. No wonder you get the impression that treating advanced PD is a waste of time .there is very little help available, small adjustments in medication, drugs that have nasty (falls) side effects and the patient starts to feel like a guinea pig,.It is too complicated and takes too much time. It does help, though, if the patient is well prepared, questions decisions ,  asks the right questions , has some idea what is possible, what is not ..

I read that on the whole patients with Parkinson's  disease are doing better if they attend Support Groups (probably are therefore better informed )To some extent a forum  with its discussions  and personal experiences  do a similar job. Keeping ignorant is risky too, mistakes are sometimes made

So far I have stuck to what I believe in: Go low, go slow with the drugs. I have apart from a short try here and there (Azilect,, Entacapone) stuck to two drugs, nl. Sinemet( levodopa)  and Mirapexin (a dopamine agonist) in the hope I do not end up taking drugs purely for counteracting side effects.

Best wishes for you all, I just wanted to take this off my chest!

Kate

#7

Good evening. You are my doppelgänger. I am 52 yours old and been diagnosed on 1st June. It was a great relief to have a diagnosis which was not as bad as we had been lead to believe. I started back to work on a phased return last week.

 

Staff very sympathetic and, at the moment, understanding. Should be back at work full time in 4 weeks time.

 

How is it going with you? I hope you are coping.

#8

Hi

Have now been wading through the mire of idiopathic PD for some four and a half years. At 55 years of age the relentless march of such the vile infliction presents itself every day in one way or another.

Most of you guys reading this already know the degenerative facets of the disease which affects us in different ways but with the same outcome, that being degenerative and incurable. My hand writing starts off polished then scrawl ending in a near perfect line (admittedly on a slope). Do what you like it is what it is and ends up as scrawl, all in the space of a few words. I take considerably longer to perform daily functions such as eating, getting dressed, walking etc etc.

I have lost confidence in interacting with others especially people who i am not familiar with. This is pathetic as i have just retired from a position where i had to interact with others just to get along -- due to PD.

On a more interesting note, I have just completed a PIP interview and medical (last Tuesday 12th Dec 2017) and am eagerly awaiting the results as a few bob would come in handy just about now. Every time i see the post man pull up in his van i go charging after him. I'm sure he's at the stage of throwing the mail at me as he drives passed.

Will let you know how i get on.

With Regards.