I’ve been lurking on the forum since my diagnosis in 2017 but haven’t said hi. I’m a 43yo woman, an artist as my profession and I have two teen daughters.
For me getting diagnosed was more a ‘ah-ha!’ moment. It explained the strange symptoms I’d been having for some years. I’m not very fond of GP’s so didn’t chase anything up until I fell and had a very bad break that needed a specialist to look at who then felt there was something dodgy about my tremors, gait and general well-being. He sent me to harass the GP to get me a neuro appointment…and the rest as the say is history.
As I’m YOPD I haven’t started medication, I want to start when I really can’t function effectively, currently I manage ok. I’m also really interested in the new research…if there is a good time to get this disease perhaps now has the most hope for some break through.
On the whole it’s the fatigue, tremors (they make my job very hard) and the general slowness that I find challenging. I’m very fortunate to have a supportive family, and flexible lifestyle to adapt to these symptoms.
In my reading of many of your stories on here I can see what a supportive community you are! Thanks for sharing!
A warm welcome to the forum!
After two years of lurking we’re sure you already know that our members will be along soon to share their experiences and more stories with you.
Until then, you may find this information and support about fatigue helpful. There’s also lots of interesting news about our research here.
Hi @Campfirewine
Welcome to the club!
I am 40 and recently diagnosed. I was the same on diagnosis, relieved but still quite shocked.
I have started low dosage meds as I would like a better quality of life now, but I’m aware I will have years ahead of meds. It’s a personal choice, and PD is different for all sufferers.
Take care of yourself, it’s an adjustment but you’ll be ok
Hello I’m 44 symptoms started at 41 I’m actually a dr and there’s strong family hx so I knew straight off … but hid it initially
started low dose meds few months ago rasagaline ( neuroprotective) in many studies and low dose ropinirole but main treatment is exercise do about 5-7 hours week minimum much more quiet weeks with high intensity the key yesterday did an 18km fell run and felt good though cream crackered at end !!! Check out
And
Exercise shown to slow or halt progression hope you are doing ok it’s possible to live really well with this blimin disease feel free to pm me if you would like :)))
Thank you for the ace info. I have read a lot about exercise being key to helping alleviate symptoms. I have always been a keen swimmer, hill walker and scuba diver and am aware that when I do exercise I feel better. Sometimes kicking the bod into action is a struggle, and I find the fall out pain can be tough but as you say keep at it! I’m very interested in the warrior program and wonder how widely available it is. I’m the north of Scotland.
If there isn’t a group near you, think about doing the on-line 10 week challenge. There’s lots of support available - even individual on-line coaching if you need it. I completed the 10 weeks and found it made so much difference. I used to walk with a stick but now my balance has improved. I do at least half an hour of the exercises every morning. Sometimes I don’t feel like it, but I know I’ll feel better afterwards. You sound like the well motivated type of person who would benefit from the programme. I used to be a distance runner.
It does cost a bit - but from my point of view it has been worth every penny!
I saw my consultant for check up yesterday and asked about drugs. I am youngish (57) so not sure if that is YOPD but he said there used to be a feeling that Sinemet/Madopar had a finite time of success so not to start too soon, but now the attitude is more of fill your boots.
I am lucky that I was already very active, but he used a useful expression “better to be a moving target than a sitting duck”. He reckons less about intensity and more about movement.
I think we are both new here. I was diagnosed in 2011 and like you was reluctant to start medication but can I urge you to do so, I felt so much better for it. An artist sounds amazing!
