Hi Everyone


#1
Hi everyone

I think I put my hello in the wrong place the other day. I am new to forums so have to learn a lot and I'm not great with a computer.

I am 58, female and dx with PD 12 days ago. It did not come entirely as a shock as 5 weeks earlier I had received a copy of the neuro's letter to my GP which said that my DAT scan was abnormal.

I'm a very outdoorsy person into hiking, rock climbing, ski-ing and backpacking and am determined not to let the PD take over my life.

Last November I hit rock bottom and after living with it for 6 weeks determined to claw my way out of it. There is still a long way to go but I am well on the way and will make it.:grin:

Back in December I did not know it was possible to feel so ill and would have happily died, but that was then and now I am a different person and back to enjoying life.

As for the future, well I am going to get back to the things that I love doing and there is a 210 mile backpack through the Sierra Nevada Mountains that is on my list!

#2
Hi Topsy and welcome :grin:
Love your positive attitude, I used to be very outdoorsy but my condition is more advanced than yours so with a heavy heart have had to hang up my climbing helmet, crampons and ice axe. Sold about 60 odd OS maps at the weekend car boot sale for £15.00, that was hard ! Seeing my trusty ice axe go was hard too especialy as it saved my life on one occassion, but life moves on even if we dont and I need to de-clutter as i'm moving house soon.
Keep up your outdoor pursuits as long as possible, enjoy the fresh air and gasp at it as if there was no tommorrow and continue to enjoy whatever you can get out of life.

Good Luck :grin:

#3
Welcome to the Forum, well done for pulling yourself up and managing to improve your health. I am 62 diagnosed at 57 and very active with the help of medication. I found the PD made me take stock of what was important to me and I have moved nearer family and made some life changes for the better. Best wishes for lots of summer outings.

#4
Hi Topsy,
I replied on to your post on the other thread "New to.."

"Hi Topsy,

I read your post with great interest. I can give you a few years at 72 and was never quite as active but like you once I got the dx three years next May and the meds kicked in I made up my mind to be as fit as possible. Like you I had noticed various things not quite right for at least ten years but a car accident triggered a tremor and dx ensued. A couple of months before dx I started to walk "funny" at the end of walks in Portugal and was blaming the boots, the pace of the walk etc. etc. I have just got back from a two week Ramblers holiday in Nepal sightseeing/6 days trek at lower altitudes. I have gone up and down thousand of stone steps for 5-8 hours a day admittedly under the watchful eye and occasional helping hand of one of the younger sherpas due to my laces tangling and a headlong fall early on due to the fact that the leader couldn't be asked to allow me to get my boot hooks sorted out at the beginning of a walk - but that's another tale Now I'm back home with my stiff hips which started returning just after Xmas and I can't imagine how I did it. I think that the older you are the more the use it or lose it" principle applies. I look forward to reading more about your progress.

Best wishes

#5
Hello everyone,

I am 49 and was dx just over 9 years ago with PD. I have only just decided to start using the forum because I want to share my experiences with others.

Personally I think my PD is a hurdle, something that has to be overcome, rather than a barrier that stops me doing anything. Since dx I have been promoted at work ( Police Constable to Sergeant) and taken up playing golf ( handicap is 20.2 but have been down to almost 18 in the past).

I have had many of the experiences mentioned on the forum; a nightmare with DA's; depression; diskynesia from Levadopa medication; anger at the unfairness of it sll and so on, but I am still here and still going.

I have chosen 007 as a forum name because, like James Bond, my PD leaves me shaken but not stirred! Life is for living so lets go out and live a bit!

I hope this forum membership will add something else positive to my life, and I enjoy a good lively debate...

Regards,

007.

#6
Hi there and welcome. I was diagnosed exactly a year ago and it's been a year of fairly mild symptoms, a stooped shambling walk and problems with manual dexterity. I am on sinemet plus, which seem to be doing the trick, although the neurologist wants me to increase the dose. not sure if I will though!

Biggest problem is the depression, which comes and goes, I have good days and bad days. Mainly worse in the morning. I can cope with parky's but find the depression difficult. 2 weddings in the family this year so must keep well for those!

the forum really helps to calm me down.

#7
Johnall,

The depression will come and go. Try to stay motivated and positive. I know that is easier said than done, but I tell myself that PD is not life threatening like Cancer, and there are a lot of young men coming back from Afganistan who would gladly exchange their injuries for a shakey arm, a bit of short term memory loss and a bit of depression every now and again. I know that my symptoms are mild compared to other PwP that I know, but a positive attitude helps keep the progression at bay.

Get out and about, and get what you can out of life whilst you still can.

Try not to up your dose of sinamet unless you REALLY need to is all I would say on the medication side. Read other postings on this site before you change anything and be open minded about whatever you are offered.

You are NOT alone, we have ALL been through this. It WILL get better !

regards,

007 (shaking but no stirred!).

#8
hi my name is les thankyou for letting me join your forum im wanting to explain my self and also look at other opinions from other poeple i was diagnosed about 3 year ago during that time my condition has gone through alot of changes the pd nurse has give me levadopa and im only 40 year old i take rasagiline domperidone reqiup xl 8mg and also levadopa my condition has not yet showed any sighns of improvement as yet but im hoping it dose i also have a partner with m.s and have a 10 year old girl so thats a challenge aswell as you can emagine well thats a little about myself .

#9
Hello Johnall and Les.
I was prescribed an anti depressant around the time I was diagnosed and it helps me cope.

Les, sorry your medication is not helping. Maybe you can get it adjusted or changed to try something else.

#10
Hello Toonarmy,

Welcome to the forum, I do hope they get the right medication to suit you soon.
Just to let you know My husband was diagnosed aged 39 and I was disabled with a chronic back condition after nursing aged 29 and used a wheelchair after about five years. We have managed to have a reasonable life but with many difficulties along the way but we managed to bring up our son who was only 4 when i was disabled and 10 when my husband was diagnosed. I won't say it was easy and now that my husband is in a nursing home, that's another change we have to get used too but he has had it almost 30years now and still manages to get out for fishing trips and college two days a week. We also started a branch where we live with just about twelve people and when I retired last year there was 175 members and a healthy bank balance. I hope this gives you some encouragement, just take a step at a time and be ready for many changes, I always look for the upside and it has managed to get us through.
best of luck best wishes
vivian

#11
thanks vivian i suppose there is always worse off than myself so maybe i should be thankfull for that i appreciate your advice its really made me feel like take it by the scruff of the neck and saying to my self stop moaning and get on with it im just saying that i have bad days more than good but i hope it all works for you and i look at your situation and think les you have it easythanks

#12
hi toonarmy i have had pd for three years and my symptoms are gradually getting worse by your name are you in the north east ?if so take a look on sept bike ride newcastle thats me in blue top ,please feel free to send me pm and i will give you my details and contacts of some great pd uk people here in newcastle if you want regards michael

#13
Hi Tooarmy,

It is very difficult to cope with all the changes you will have, but I think if you can go with the condition and not fight it in a negative way (Tuff I know) but meet other people with PD and their families I am sure you will get a lot of comfort and fun with them just as we have for many years. You will make some really good friends for life.
My very best wishes
vivian

#14
hi vivian thanks for the advice i am trying to fight it in a positive way i find it very hard because i was an x tank soldier served in northern irelandjoined during the first gulf war i served 4 years only durin that time i went to germany (based there) northern ireland canada switzerland bavaria jungles of brunia i seen lots of things that would give others nightmares like aushwits prison camps eagles nest and even seen the vontrap house in bavaria from sound of music ive served in the jungles living in woode tree houses to keep of the ground from snakes and other nasties ski ing in switzerland ive certainly lived and im only 40 so thats why i find it hard in northern ireland i seen riots seen one of my freinds being killed while i was on patrol so you could say ive been about so living at home now with my parther with m.s i obviosly parkinsons and a 10 year old girl its the biggest challenge for me yet so yours and others advice is very important to me thanks

#15
i was taiking rasagaline ,domperidone,reqip xl and levedopa madopar,x2 but i noticed i was suffering from that legs really hurting sickness dizzyness nausea so i took 1 levadopa tonight and i felt better so we will see i often myself and other pd poeple that try differant tablets are making our bodies worse dose anyone have a copy of the diet required to pd sufferers i seen it advertised just wanting a copy if anyone can email it to me that will be great

#16
email is lesstobbart@live.co.uk

#17
private message then no probs

#18
Hello Toonarmy,
Heavens you have seen more than most of the difficulties of life, My husband was in the TA for a short time nothing like your experience of course. I think the problem is it is different when close family are concerned my husband lost his mum when he was nine and family is very important to him but he is angry that PD has robbed us of a normal life, even though we have made the best of it, it is still hard.
You should be able to download the fact sheet from the PD web site on any number of subjects including how protein affects PD, we were always told to eat protein in the evening if possible when you are less likely to go out. We found that early onset pd people had more problems with food than the older generation. An example one friend always had a light breakfast when working but come the weekend he loved a good English breakfast and he couldn't understand why he had such rotten weekends but once we told him not to have even eggs for breakfast he was a lot better.
You have a lot to cope with so all my very best wishes
vivian

#19
hi vivian thanks for that your attention on the problems i have are very much appreciated more than you think THANKYOU

#20
hi anyone going to eastwood hall tomorrow
trikey will be there
best wishes