My shock at being dx with PD


#1
``hello, this is me, 66 year old, introducing myself. Never ever thought I would be part of this forum.
My symptoms, for about 12/15 months, have been making mistakes with left hand when using keyboard, left arm not swinging when I walk, loss of some dexterity in l/hand, more recently slowness when walking and stiffness in l/shoulder.. DX almost 3 months ago. Not yet begun meds as needed time to absorb, think, weep, etc etc. Am still unsure about beginning meds - Madopar - mine are early stage symptoms and my plan is to do all I can to strengthen myself, go to gym, walk more, work at loosening up.

Any thought on downside of delaying meds?

Speak again soon . . .

#2
hiya welcome to the forum,im ali,im 43 years old and been dx for 12 years.there is good friends to be made her and very good surport:smile:everyone is different i guess when we need to go on meds,the longer you can cope with out erm the beter i would say.something to dicuss with your neuro.have you got a parkinsons nurse,i have and there very good to have,help you out so much during the months your waiting to see the neuro agin.exercise is the key to things as well,the more we try to exercise the beter for our stiffness and joints.hope to see you around the forum x:smile:

#3
I am the same age as you and was diagnosed 2 years ago as a result of a tremor in my right hand and arm. My neurologist immediately put me on maximum dose of amantadine plus 3mg of mirapex per day. Symptoms almost immediately went away. The tremor comes back every so often when I have been careless about my medication, but other than a little fatigue, I am normal. Together with my wife and doctor, we decided that a quality of life now is important so I made the decision to start medication right away. I have kept a diary of my journey(www.wpchap.blogspot.com) where you can see the diagnosis is not all that frightening, at least it hasn't been for me. I agree with Ali that exercise is very important. That, plus a positive outlook will help, I believe, slow down the progress of the condition. The information provided here by the old pros who have had PD for some time has also been beneficial. Good luck on your journey. If you go on mirapex or other agonists, beware of obsessive behaviors (I have not had any but many have).

#4
Hello A-W. Yes, it's certainly a shock to get the bad news. I remember thinking it can't be me. Parkinson's is something that the other person gets isn't it? This was nearly 5 years ago now. Took early retirement at 63 (I'm 66 now) because my job involved operating machinery. I was fortunate to be in a good, final salary pension scheme.
Anyway you have come to the right place. Help and advice, courtesy of Parkinsons UK, is just a phone call away. While here on the forum you will be able to tap into the combined wisdom and experience of our members. We're all in the same boat but the more rowers we have the better. Meanwhile try to cultivate a positive attitude and don't give in to any feelings of depression. Above all fill your life with plenty of variety, keep active as possible (physically and mentally), cultivate new hobbies, go out and meet new people. Just remember, the outlook has never been better for PD sufferers.
Keep posting and tell us more about yourself.

#5
Hi, Aber-Wells. Welcome to the forum. Being dx is horrible, isn't it? Sorry to meet you under such circumstances.

Like wpgchap, I started on meds pretty quickly and am glad I have done so. Won't go into the ins and outs here - it's in my blog, if you fancy reading it (thejellychronicles.net) but don't forget that you can always change your mind about the meds.

By the way,wpgchap, I really like your blog, though I think you meant the address to be wpgchap.blogspot.co.uk. I can't work out how to follow it, so I'll link to it. It's a reassuring read for a newbie.

#6
Thanks for the kind words Jelly. I live in Canada so the actual address of my blog is www.wpgchap.blogspot.ca. For some unknown reason, I have been using ".com". Must be mad cow disease.

#7
Thank you all so much for your responses. Heart warming.
I have just been for a walk in the sunshine around my local park. Highlights were: sun on lake, cake and decaf coffee and above all meeting a 11 week old Jack Russell/Chihauhua puppy - tan and white and the owner placing the bundle of joy in my arms. Until last October I shared a delightful minature Jack Russell with a friend, so little dog ha 2 mums and 2 homes, sadly she died aged 14 and I miss her awfully. My dx came just 2 weeks later. We are on the look-out for another small dog and not sure whether to go for a puppy or more mature.
Right now I need to do some stretching and have a cup of decaf tea.

I will respond more later to your caring and encouraging words.

#8
Thanks to Jellywoman, Chrsto, ali j and wpgchap for your responses. A very warm welcome to this important forum.

I have now made the decision to postpone taking Madopar for as long as possible. Yesterday I also discussed this with my local Parkinson's nurse and she agreed with my plans. As I am in the early stages of PD I feel I can cope with the symptoms. I am also wary about beginning before really necessary as am reading about the problems with dyskinesia that can erupt in the coming years.

I've just been to my local specialist gym, for people with disabilities, great stuff for this rather weak body.

wpgchap I have skimmed through some of your 2011 postings, thanks for all that you share. Interesting to read about your ocd exercise routine! How do i find your blogs for 2012? Canada is one my favourite countries. Relatives own an island on Georgian Bay and way back in the 80's I spent a month there and in Barrie. A long time ago but I can close my eyes and return there so easily.

Thanks to all, I am glad I have joined you all.

#9
Aber - apparently the address has been changed to wpgchap.blogspot.ca. Please let me know if this doesn't work. It should take you to January 2013 and you can work back from there.

#10
Hello wpgchap, thank you, for some reason, when I first read your rather special writing, it finished at 2011, now I have read right up to this month.

Like you I try to live in the now, one day at a time, mindfully of course. During the days when I really manage to be in the present moment life feels so very good.

#11
Hi Aber - Wells

I'm also 66 years young and have had this nuisance of a disease for 4 years officially, and even though I live in West Berkshire, I am originally from the "Aber" Valley.

Maybe not the same Aber ( and my mother came from Wells ) , odd eh?

No real comment on meds as each of us is different and react differently to the meds. I do take Madopar as an extra drug, but haven't noticed any difference really since starting it.

Regards,

Mike .

#12
Hello Mike, thanks for your response. Yes, many Abers and Wells.
The snow has arrived so do take care.

Best wishes

#13
hiya aber i was dignosed at 39 and started my treatment straight away as for the dx i think i was more relieved than scared tbat i finally had a name for mt problems im shaking bad right now meds havnt kicked in STALEVO MADOPAR & REQUIP is my life bye for now keep smiling

#14
Hello Magic909
I understand what you say about relief as that was one of the other emotions I experienced. Now some of my weird physical symptoms begun to make sense.
I am sorry you were dx at such a young age - how old are you now? Living through this learning-about-PD phase of my life I am amazed by the many and varied symptoms that people experience. The same seems to apply to the side affects that occur.
Sorry too that you are shaking badly, that must be so tiring for you.
Best wishes

#15
:smile:
Hello Aber-Wells, you Sir if you don't mind me saying are on exactly the right
path, the way you are dealing with BLACKHEART, is to be greatly admired, I can
imagine you at the front of the battered bloodied and bruised victims of the cruel evil affliction leading us to victory and wiping this foul disease out for
eternity, I know that sounds a bit corny , and don't worry I have not blown all
my fuses, I just think It needed saying.
Kindest Regards fedexlike:grin:

#16
Dear fedexlike
Thank you for your encouraging words
Best wishes to you all for safe and warm days amidst the snow

Aber-Wells