Hello Folks. I’ve just joined up and have read a few posts in the last hour or so which has put my relatively minor problems in perspective. Nonetheless I thought I’d put fingers (just 2!) to keyboard and introduce myself. I was diagnosed a couple of months back although I think the onset of symptoms began 2/3 years ago or even longer, but I didn’t recognise them for what they were and my GP put them down to advancing years-I’m 70. Anyway my symptoms are relatively minor at the moment-tremor in left hand, general weakness, some problems with balance (currently sitting on a very sore backside from a fall) and feeling as if I’m carrying a bag of cement with me all the time. I’m on Sinemet Plus 25mg/100mg 3x a day, but to be honest, my symptoms are if anything worse now than they were 2 months ago. The neurologist said the tablets would give me my “oomph” back so I was expecting more from them than I appear to be getting-was I wrong? I’m still waiting to hear from the local (I’m in Stourbridge, West Midlands) support nurse/group which the consultant said he would notify about me, so perhaps it’s time to chase that up, although I don’t want to be a nuisance as I’m sure they’ve got their hands full.
What I would really like to know at the moment is how the PD is going to progress. I realise I’m relatively lucky for this to be happening quite late in life but am still looking forward to being around for a few more years yet and prefer to be as well informed as I can be as to how things might turn out.
Finally, I’m still driving (waiting to hear from Swansea), so am still mobile and if I can help anyone locally I’ll be happy to do so, even if it’s just a chat or helping with transport.
Hope you all had a good Christmas and with best wishes for the New Year.
Hi Casper,
Welcome to the forum. I hope you find comfort and knowledge amongst your fellow members here.
It’s difficult to know how your Parkinsons might progress, but your fellow members will be able to help you along the way.
It sounds as though you have things in order, but remember that we’re available on our free helpline on 0808 800 0303 Monday-Friday: 9am-6pm and on Saturdays from 10am-2pm if ever you feel you need more advice.
Hi Casper and welcome, as you read more on this Forum you will realize that we’re all different and progress through the disease in different ways. It would be worth while speaking to your local GP Surgery to ask them about your local PD Nurse, once you’ve established contact you will find them extremely helpful in your quest. Many people and i’m no exception will tell you adopt a positive attitude like by thinking, you have Parkinsons, it doesn’t have you !! There are a lot of good people on here just waiting to offer you their wisdom. We are all in the same boat and rowing one way, together. I too drive and am on a 3 year restricted licence with DVLA.
Casper, I am 74 dx’d 2008 but self-diagnosed in almost early '90’s! I have never had any PD meds. I am sensitive to meds so this is my own choice. I just go to a GP. Occasionally I take something for pain, muscle relaxer and even a mild nerve pill when life takes a wrong road (death etc.) All of which seem to help my PD symptoms. I do not take these daily. As they say we all have our own PD path of progression. You too have your own path. Read you body and experiment - with docs approval and see what is best for you. The symptoms you describe are common. I rarely fall and when I do I usually deserve it for getting my body where it should not be! My doctor can’t figure out why I don’t fall! I’m just thankful. Take care.
Hi casper ime not too far from stourbridge more Dudley i was officially diagnosed in dec i only have a tremor wich doesn’t really bother me only in public i feel people are looking obviously not i drive and ride a motorcycle just take 1 step at a time get use to the forum some amazing people on here research as much as possible you’ll be ok
Thanks for the replies folks. It’s early days for me and there are obviously a lot of variables with PD. I’ve been told positivity is key but I’ve got my whole family close by , which will help. It’s going to be a long journey but since it’s now unavoidable I suppose it’s down to me to make it as enjoyable as possible., hopefully with the help of a few new internet friends on this forum.
@Casper, The thing to remember is that this disease is not immediately life changing, so keep doing what you are and live life as full as possible. If you haven’t got any interests then get some, join a club ie I play both Indoor and Outdoor Bowls. If your body is up to the challenge, do it !! I spoke to a new member on here yesterday who goes to U3A, they do loads of different activities it would be worth checking them out. Keith, on this Forum you will never be short of friends, it is what you make it. Take care and good luck.
Hi!
Regarding holding up a crystal ball to see what the future holds for you - everyone’s symptoms are different and progression of the disease varies accordingly. A positive attitude, a good diet, plenty of sleep and lots of exercise are all key to keeping fit and active and may slow the encroachment of the disease.
Re getting a slot in the diary of NHS staff: you have to take the initiative here. They are hard pressed but you have paid handsomely through your taxes for their services. Don’T wait for them to contact you. Contact them now!
Re drugs and other forms of treatment: it is worth your time to work systematically through this forum. There is plenty of advice and experience for you to draw on.
No one knows for sure what causes this disease and most of the medication on offer is addressing symptoms rather than the fundamentals behind them. There. Is always a price to pay for banging a symptom on the head because the body takes defensive action to deal with ‘side effects’ of the drug. It’s a mine field. But there is plenty of experience and advice here to chew on.
My advice in this situation: establish a good working relationship with your professional medical team but also take charge. It’s your life, not theirs.
Best wishes for a long and happy future. JCPB
