Ann T,

Am I actually the one, who is the first to say, "Welcome back, Stranger!??".. lol

That's the Ann T I used to know....great thread.

paula

Thank you, Ann for your kind message to me. With your attitude, I will not count you out at all. Of course, it's easy for me to say, I am on the outside trying to look in. Life is difficut enough and then there are the road blocks and potholes of this disease that can surely try one's spirit. Sometimes the effort to muddle through is an overwhelming challenge with sometimes underwhelming results. But if you and any of us heed what Steff has said, good things will come round again. Try that ginseng and keep on keepin' on.

My very best wishes for you,
Maureen

Just to say I hope things look a little brighter today.Shame we PD folk don`t live closer,then we could maybe do something practical for each other when we take a dive...although I am sure you have wonderful family and friends.Sometimes it needs another PD person to understand totally how our "laughter" level and "shiny smile" can suddenly dissipate into sadness and weariness. Could it be that you are tired Ann?
At the minute I have pleurisy and it is doubly hard to get a grip.My face is so darned blotchy from the meds that I swear you could play "join the dots" on it although I ain`t certain what picture would transpire.

The sun is shining here in the UK after the recent floods and I have just waved goodbye to half my furniture but hey....am going to fill my lounge with sand,grab a couple of deck chairs,a sun lamp and hey ho...put on my shades and make out like I`m Victoria Beckham in LA. LOLOL
Only thing is I don`t have the mesh swimsuit or the body for it so I am going to fashion a fetching number from the hopsack my potatoes came in and take on the "cave girl " look. THAT should give my unsuspecting husband a right laugh when he arrives home. ha ha ha

A pint of beer to complete the glamour shot and I`m away.

Hold on in there. Sending you heaps of hugs.
Steff
x

Steffi, how can you manage to be so funny whilst enduring pleurisy? You are amazing. I'm picturing you right now with your sun lamp, incredibly chic suit with your ice cold beer - - living large in LA..Victoria could take a lesson from you. Have an incredible day!!
LOL, Maureen

Steffi, welcome back! You were missed..I don't come on here too frequently, but love your posts, among others.
Ann, your title especially touched me, especially after a strange conversation with my niece and husband yesterday; my niece, who was visiting from Phoenix, asked me how I was doing. We'd been takling abou something I cannot remember, not parkinsons. So I asked if she was referring to our conversation subject, she said, no-your illness. She wanted to know how was I doing, what were my current symptoms.
I don't complain; am oneof those people who just push on, and when needed, fall onto the nearest surface to rest. My husband does not like to talk about my illness at all, so when Chels asked me, I just told her some of my current & most bothersome symptoms, trying to down play somewhat. Her eyes got really wide and sad and she asked how I managed them. Meds, of course. My husband-not meanly-said It sounds like you're almost dead to which I responded, Nope, I'm still on this side of the dirt (and my face isn't in it), it's a good day! It made me stop and think we'd better talk, again.

Thank you for your kind words.And your response to your husband`s quip was brilliantly witty and good humoured.I have to say though,I don`t remain a happy bunny all of the time.I sure have my moments and I so understand Ann`s feelings. PD is like being on a roller coaster ride...and the swings....and the big wheel...in fact the whole bloody faiirground!!!!
One day coping so very well,responding with a smle to even the most insensiitive of remarks,another day..well....you could take out the nation but somehow get over it. It`s a tough one...but each day at a time I say. And whilst we can still smile then it`s best not to waste the chance of using it.And when those muscles decide to go south...[and my heart goes out to those who are at this stage of the illness] ...I hope I can find a way to still convey some warmth,humour and a glimmer of wickedness.
Stay upbeat...and you are allowed the odd day for a Pity Party....a Luxury Vent....or just a plain good old fashioned MOAN...

X

it's very hard even for those who love us, to understand what we feel. personally, I don't want sympathy. When most people ask me how I am doing, I simply reply, "good" or "I'm hanging in there". I want to live as normal a life as possible. Family members are understanding, kids especially, but the only other people who truely understand are other PWP's.
Don't get down on people who do not understsnd though. Most people care and want to help if you give them tacit permission. they just do not want to intrude.

there is a German saying that all of us should take to heart, "what doesn't kill me makes me stronger...."
this is really true.

I'm with you Empty Nest, stoically keeping going, trudging forward.... sometimes I can skip though!! Thats the way I get thru my days.

Charlie DX'ed in 1990

Thank you for your replies.

Being stoic about this disease has its good points, but in the end, it usually is just an outward appearance presented while you suffer inwardly. However, it does save you from a lot of questions that have no honest answers that will make the person posing the question feel comforted. This forum provides us with candid interactions. In nice words, no sugar-coating from me or you.

Am I tired? Yes, of course, both from lack of sleep and weariness from PD. I keep my hopes up for a treatment which will either cure us or make us feel a whole lot better.

To EmptyNest - I once had two PD friends visiting. My husband asked them questions about PD while I was present - questions he had never asked me! I sometimes think that he believes I have some alternate PD while others have the real thing. No, he doesn't like to talk about it with me, so I try to limit my complaints. Despite that, he is so helpful to me.

Paula - Thank you for the kind welcome. It is nice to me missed.


Ann

I just wanted to say that this is such a great thread. I've become brokenhearted reading some of the replies, and yet become inspired at the same time at the courage displayed. Thanks to all...

I couldn't agree more. I thought about asking that this thread be put in the Sticky section until it was pointed out to me that very few, if any, recently diagnosed parkies responded. Perhaps it is a little too intense for some.

I agree with many who responded that I feel much of the time that I am a better person now than before pd. I am now much more easy going and accept things that I have no control over. I often thank God that He has given me some hard times so I can be thankful for the good times.

My girl friend told me a doctor told her once that her health problems were merely an extension of growing old. How many of our symptoms would we have anyway, because of our age, but are compounded because of the pd? It is so easy to blame all of our ailments on the pd. If we look at it that way then maybe the symptoms can be a little easier to accept.

The only symptom that has changed my everyday behavior to a large degree is the mobility problem. I am slow getting around, quick to get tired and have back pain, fall easily, and walk like a drunken sailor most of the time. All the other little problems, poor handwriting, tremors and slurred speech during off times, pain and stiffness in my arms I can accept. I am planning a Mexican cruise in December and hope I can survive the long hours on my feet.

Thanks again Ann for starting this thread.