First timer seeking reassurance


#1
Hi everybody..

My name is David... and have recently (beginning of the year) been 'given the news'... (although, and I'm sure you know the feeling, something hadn't seemed right for about 18 months)..

I haven't got a tremor - which is a positive - my manifestation seems to be stiffness in the back, slowed movement and needing to make a deliberate effort to get any sense out of my left arm/hand.. and, again, I'm sure many of you when first diagnosed will recognise the, perhaps, biggest one - frightened!.. Did, or does, anyone do like me and almost go over a checklist every day to see if there's anything different?.. and then fret like hell! One last thing that, quite honestly, is frightening, is a feeling of tight-chestedness..I guess that's something to do with the loss of elasticity in the muscles?

My Consultant seems happy with my response to medication (basic dose Pramipexole and minimum 1mg Rasagaline)... oh, and also on statins (par for the course at my age!...65..)... and I go to the gym every weekday and do weights and a bit of treadmill.. (I ran a marathon some years ago, and was jogging right up 'till last Summer... but doesn't seem to work the same now!)..

There are some lovely posts on the Forum, and while not wanting to be a Wooss, I would be ever so grateful for some reassurance/encouragement... I know it's not going to go away, like a cold or the flu, but while I acknowledge the theory of it being a slowly progressive condition, at the moment (probably due to my fretting) it seems to be relentless...

Promise to be a bit more up-beat next time, I hope - just need you guys (and gals) at the moment.

David.

#2
Hi David,

Welcome to the forum, it sounds like your an active person which will help keep you motivated and it's understandable that your frightened, all I can say is that I've been diagnosed nearly 8yrs and still have a good life, holidays, socialising that kind of thing and I try not to let PD get in the way, don't get me wrong it's not always easy and I have my ups and downs but who doesn't?
There are lots of people here to help and give you advice on whatever your concerns are or just to chat to if that's what you need.

Take Care!

Gill.x

#3
Welcome to the Forum.Glad you found us but sorry you had to. I can only speak of John's experience. I am not boasting,just trying to show you that being diagnosed with Parkinson's is not necessarily the end of everything.John first had symptoms,mainly tremor that were bad enough to send him to the G.P, roughly seven and a half to eight years ago when he was 62.Last night he was doing a fund raising Barn Dance for the Air Ambulance,which he organised.(He has done some for Parkinson's as well) He was on stage calling from before eight until eleven forty five.The the point is that he is still able to do this. Parkinson's is condition that affects everyone differently but John and still able to lead a very busy, rich and fulfilling life. He may well be lucky. Life is a bit of a lottery. Keep your pecker up and do not let worry about tomorrow ruin today.Nobody knows what tomorrow will hold,even the young and healthy, so make the most of today.

#4
Hi David

I can identify with everything you say. I’m nearly 64 and was diagnosed 18 months ago, but started with a twitchy left thumb three years earlier. I am still on the same basic dose of Mirapexin, but can feel the symptoms slowly increasing. I know what you mean about the tight-chestedness, but find that a bit of deep breathing cures it.

This condition can take over your mind if you let it, and we all do that at times. Yes, it’s scary to think that you’ve got a degenerative illness, but you’re doing everything right by exercising and will probably fare better than many unfit, non-PD people of your age. I believe we have an element of control over PD and studies seem to confirm this. Life can still be fun, as many people on here will testify.

Don’t worry about not sounding upbeat; you probably haven’t fully accepted the diagnosis yet. Once you do, you will start to enjoy life more but, in the meantime, keep posting - whatever your mood.

#5
David,

I was diagnosed with MS firstly and eventually with PD at the tender age of 36. I am now 49, 50 next week. The initial shock wears off as you learn to live with the whole condition. It does not end your life is simply changes it. This may sound glib, it is certainly not meant to.
I still wake up every morning and spend the first couple minutes assessing my physical condition and believe me this can change from day to day, hour to hour with no apparent reason. However, you do learn to reprioritise all that you do and you become much more selective about who you see, for how long and what you do. I found this a very positive change in my life, since I've had to learn to say no more often than it's my nature to do so.
The drugs can take a while to settle, this require a great deal of patience especially on the part of those who live with you.
In order to combat fretting I do strange things for example, if walking is difficult I count all my steps to a rhythm. I also have a mantra which always contains the word: serenity.
The key is to have good medical and family support. It sounds to me as if you have this. However, one of the purposes of this forum is to provide yet another form of support, this time one from people who have been there and can therefore offer a different slant on the whole scenario.

Do use the forum, it can sometimes take a while to get used to opening up to strangers. We will not bite.

Take care, maybe learn to be a bit more selfish, but above all go with the flow.

mrs.t.

#6
Mrs T.. Lily... English Country Dancer... and Gill66... Just needed to say 'thank you' to you all for your replies, thoughtfulness and good old sound advice..

You all 'read' exactly where I was at when I wrote my message..I am so fortunate with a caring family at home, and within our Church - but I am really grateful to you all - and the bonus... now I've got some new friends!

Will keep in touch..

David

#7
Hi everyone, I've been plucking up courage for ages to do this, even though I was diagnosed with Parkinsons in 2005, after having a tremor for two years. Looking forward to joining in different forums as they always sound very interesting. I am 64 years old and live with my husband who is 65. We have three grown up children who have all flew the nest, but see them and their families regularly.

#8
Welcome Poolie. Your family situation is exactly the same as mine so I hope we come across each other again.

#9
Welcome Poolie

#10
Hi Poolie,
Welcome to the Forum from my short experience it is full of good people who do care. I am a youngster by your standards 56 soon diagnosed almost 3 years ago. My wife made first contact & I have taken over occasionally I will put a poem in. Hoping all goes well and our paths cross again
Regards
Warlock

#11
Hi David and Poolie,

Welcome to the forum!

David, I know exactly what you mean about the reaction when first given the news -frightened. Knew next to nothing about PD at the time. Went over the checklist when told by the GP of the possible dx, and mum had most of these. I am constantly looking for changes daily. This naturally accentuates the tremor and general nervousness and anxiousness of mum. Not good at all.

Take a look at the thread "Age and Date of Diagnosis" (or something similar). There are around 25 responses thus far outlining the ages and date of dx of members of the forum. You'll find out what a diverse group we really are.

Poolie, how are you feeling and what is your treatment regimen?

Best wishes to you both,
rico