Thankyou, I just think personally I have the disease, nothing I can do to change that fact. I finally know what I have now to get on with living. I am still working when before I knew was seriously thinking I was going to throw it in as I was just going through the motions. Been on meds know for a few days and the difference in movement and clarity of thinking is fantastic, seeing great results. I don’t feel like I am moving in slow motion. I still get tremors and pain not half as bad. Neuro again in November. I know their will be challenged in the future, but I still have a lot of living to do. Yesterday I mowed the lawn and cleaned a yard, today I was just go go go. This has been the first time that I haven’t fallen into a fatigue coma:grin:anyway there is tooo much drama at home for this hurdle to stop me.
I think we all react differently. I can’t really give advice, as I am still learning about Parkinson’s myself. I can only speak for myself the medication has helped me so much, with my movement walking, cognitive. I used to be so fatigued and constant pain, pins and needles, cramps. To name a few of the symptoms. Best to speak to your neuro. This forum is great so I am finding out to ask questions etc. i wish you all the best. I also have a strong family who treat me exactly the same, not look at me and see I am “sick” and see the illness. Yet I think since taking the meds anyone seeing me walking down the street wouldn’t know I had Parkinson’s.
@Andy95 I don’t think you need to take time off work, only for the appointment. You should be able to return to your place of work and continue like nothing is wrong. As Lisa1968 has correctly pointed out, we are all different and have different symptoms but the main thing is you are still you. Parkinsons is a mine field which we all navigate in our own way. If you have any questions you want to ask there are plenty of people about on here who will rally to help you. Regarding my earlier post about Clonazepam I have had to come off it as I suffered a fall on Monday which resulted in my having 7 stitches in my right elbow. The drug made me drowsy and I was aware of losing my balance more and became more short of breath. So I am back to square one !!
Thanks I’m seeing a consultant tomorrow so see how I go just don’t want to be waiting ages for the scan I’m a bit more accepting of it now.
I am glad the meds are working for you.
When I started with Azelect, I found I could walk down sloping walkways again. Much better than feeling like I was about to fall every time I tried. No more feeling like I was walking through treacle all the time.
Later when I added Sinemet to the mix, I could suddenly type again. That was even nicer than walking downhill!
Last neurologist visit the only evidence she could find was the tremor. I tried to increase the Sinemet to see if that helped but that caused nausea so I have backed off for now.
We have good local PD nurses here in Tassie but I travel 700km round trip to see the neurologist. A new one has started in Launceston which will halve the travel distance once I have changed to him.
I am a Tassie girl, born and bred lived around the Hobart area, left when I was 18 headed to Perth where I met my husband ( my sister was married to his brother) I must say I am feeling much better in my thinking, walking, talking and the best thing of all is sleeping better as I can turn in bed easier. I had a few symptoms present at work today (shoulder pain, pins and needles, numbness in fingertips, few balance issues) nothing like it has been though. Also I can manage to stay awake most days with minimal daytime sleepiness, have more energy I can now make my bed each day, go to work come home and prepare dinner, dish it up and wash the dishes, something I struggled with for last twelve months. I am not sure of how Parkinson’s will affect me in the long term, as still new to this disease and like most of the people that have only associated Parkinson’s with Michael J Fox, I virtually know nothing about it. Yet I am up for adventure and in for the ride, and like I deal with most things I cross that bridge if or when that happens. In the meantime I am just enjoying life, I even managed to walk the dog may of been just around the block but it is a start( it will do us both good our dog is supposed to weigh around 8-10 kg weighs 12.7 kg so vet has said get him down to 10kg.) How do you get a PD nurse and do you need one at early stages? I have been told to apply for NDIS have you heard of them? Nice to find another taswegian on a UK forum non the less.
Hi Lisa 1968 good to hear from you you can ask your surgery, ring your neurologist secretary or failing that try helpline number above they will help you find one in your area I, m moving on to new meds and have fallen couple of times more cuts and bruises anyway keep in touch take care and be careful you Don, t overdo things
I live in Queensland and was told by my GP that unfortunately we don’t have PD nurses here.
Hi Lisa and Trixyz23,
Have a look at Parkinson’s Australia website.
From there, go to your state pages.
They both list support groups and I recommend contacting your state organization about local PD nurses and if possible, joining the support group.
My GP doesn’t seen to know much about PD so the nurses will be good support over the years.
North West Tasmania has one of the highest population percentages of PD in Australia and the world so we need all the support we can get.
I certainly know about NDIS but being of retirement age, I go through “My Age Care”, which is considered a pain to deal with but better than NDIS (National Disability Support Scheme for the UK readers)
I am a little over 12 months into my adventure so I am still learning.
Jim (not a real Tasmanian, I have only been here 40 years, ex Brisbane)
Thanks Jim for the website. I already go to a support group, I will ask them about
the PD nurses.
When isn’t cake a great idea:grin: I have been stalking for a while when I suspected I might have Parkinson’s. I agree all are very helpful positive and warped sense of humour right up my alley.
Welcome StopLess, having a sense of humour helps to overcome the negativity of the disease and is half the battle. You have dropped in at an appropriate time and hope you find us informative whilst being your friend at the same time.
Great words. It is important to be courageous enough when you realize your diagnosis.
Well done Lisa on your great positive frame of mind. You are an inspiration
Celebrate diagnosis with cake… brilliant idea…i will do that when i get diagnosed.
We just noticed this was your first post, and we wanted to take a moment to welcome you to our lovely forum community. Here you’ll find loads of advice and support, but you’ll also find more than a little warmth, humor, and companionship. We’d encourage you to have a look at the art and music sections, and contribute as you like! There is so much power in friendship, and this forum is a wonderful example of that. We’d also like you to know about our free and confidential helpline, at 0808 800 0303, staffed with trained advisers who can help with everything from medical advice to mental health resources for both PWP and family/carers.
Again, we welcome you and hope you’ll find comfort among this group of true legends.
Friday I got told,you have Parkinsons. Dont know if I can call it lucky or not but, I don’t have shakes. It was a shock because I never thought for one minute it was something like that. I’m determined I’m going to try and stay positive, eat healthy, and most of all exercise. It’s just not quite sunk in yet though.
We just noticed this was your first post and wanted to welcome you to the forum. As a newly diagnosed PWP (Person with Parkinson’s) you’re sure to be going through a lot. It’s wonderful to see your positive attitude, and you’re going to soon see just how powerful that can be as you get to know our amazing community. There is a helpful section on our website for newly diagnosed PWP, which we offer as a jumping off point for the wealth of research, news, and archived forum discussions available there. We also have a group of brilliant advisers at our helpline, at 0808 800 0303, who can aid you with everything from medical questions to local community resources in your area, and more. We won’t minimize the challenges ahead of you, but we are happy to provide this forum where you will learn, above all, that you are not alone.
Please accept our warmest welcome and best wishes,
Hi @Johnboy1, Welcome to our world !! What I will tell you first off is to not change your lifestyle because of it, carry on doing what you do best and adopt a positive attitude. We all have differing strains of the disease and you’re no different !! You’re lucky at not having the shakes like some of us. Have a laugh at yourself if need be to put people around you at ease and never be afraid to tell them you have the condition. If ever you get to a point whereby your struggling to do something, don’t be ashamed to ask for help or the offer of it. It is worth your while talking to Citizens Advice Bureau to see what Benefits you’re entitled to, i’m sure there will be something you can claim for. In the meantime we are here to help you in any way we can. Take care and stay safe.
Thank you. I’m not sure how I add my profile.