New Member, Diagnosed October 2012


#1
High everyone. Just thought that I would introduce myself.

I am male and approaching 65 and in January 2012 my GP thought that she had found stiffness in my arms. She referred me to a neurologist who refused to make a PD diagnosis as she found no obvious symptoms. She did offer me a DAT scan “to put my mind at rest”. In October, I decided to have the scan which in fact, proved that I do have PD. My only noticeable symptom at present is a mild tremor in my thumbs, especially on the right, mainly upon waking up in the morning. I did however experience extreme anxiety when, three weeks after my PD diagnosis, another medical team falsely thought that they had found a cancerous tumour in my back. A double shock that was extremely hard to cope with.

I have joined my local Parkinson’s UK group’s weekly fitness class which I enjoy very much and can thoroughly recommend. I have also enjoyed Michael J Fox’s two biographical books, ‘Lucky Man’ and ‘Always Looking Up’. So far, despite reading all I can, I am relieved and very surprised how philosophical I feel about the diagnosis although I am taking Venlafaxine for anxiety. Not sure what the future holds but from my reading and this forum, it is very clear that a positive state of mind is vital.

Am seeing a different neurologist tomorrow, but intend to avoid medication for as long as possible. Is this the best strategy?

Thanks for reading.

#2
Obviously discuss this with your neuro but, from a personal perspective, I would hold off taking medication for as long as your daily life is not limited in any way by your symptoms.

#3
Hi, dj47 --
Welcome to the forum. As another non-doctor, I agree with Benji. I have had PD 15 years now, and for me that strategy has worked. I took no medication at all for the first few years, but I did not encounter the anxiety you have suffered. As my symptoms emerged, I began one med. on minimal dosage, then another. It is reassuring to know that you have "somewhere to go" yet if the small dose isn't enough. At this point my symptoms are all under control with full doses of two drugs, still minimal doses of two others.
Keep up your spirits and know that you can live a normal life a long while.

#4
personally speaking, my objective is to maintain about 85% of normal functionality on the minimal dose that achieves this. Especially if i was 65, I wouldn't be worrying too much about side effects in 15 years time. Can you do all of the things that you need to do and most of the things you want to do? If not, why at your time of life live less well than you can for the next fifteen years?

#5
I agree with Turnip. I was diagnosed with PD 2 years ago at age 65 and my doctors and I decided we would go for a quality of life and not worry about side effects 15 or 20 years down the road. I went for the drugs and I am on mirapex and amantadine - mirapex 3mg daily (less than half the max dosage) amantadine maximum dosage. These drugs mask my tremor and make life more or less normal. I am lucky in that I suffer no bad side effects on either drug. As one neuro said to me "Oh well, you don't have to live with it that long, so make the best of the remainder of your life". One other neuro agreed and a third told me to put off taking drugs. I took the advice of the first two and have not regretted my decision. If I were younger, I think I would have put off the drugs; although, the tremor in my hand would have driven me crazy and I wouldn't have had far to go. All the best to you.

#6
Very different to being diagnosed at 47 and put on drugs straight away,doses increased to a silly amount very quickly,us thinking that was the best course to take and the considered opinion of a neurologist, because 15 years ago Google was not so readily available. I so wish it had been. We would have delayed medication for as long as possible if we had been better informed.

Now we are facing the consequences We now have a different neurologist who is of the opinion that less is more; just enough to control your symptoms but not over medicated, as my OH was before.

After 15 years, for us, the efficacy of the medication is proving less than effective.Delaying a few years might have bought us a few more years down the line.

#7
my ex was diagnosed in 2003 with PD, and though the news was devastating he wanted to delay drugs and try anything natural eg foods, exercise etc until he needed medication. the neurologist admitted he new nothing of any alternative treatments only medication but was happy to delay prescribing till he felt the time was right. In 2011 he felt the time had come to try the medication and he was given a low dose starter pack of Requip, the results were good tillthey wanted to increase the dose then things went from bad to worse..... I pleaded for him to be given Simminet as I had seen other people respond well..... no this made him much worse but then we couldnt persude the PD nurse to alter the dose or change the medication.....She was of the opinion that more was better and that the problems were being caused by under medication not the drug.....and it was stated that the PD consultant at the local hospital wouldnt entertain anyone who would not take the drugs from date of diagnosis....back to REquip eventually after what appeared to be stroke like symptoms and a hospital stay....was it the side effects of Simminet? No ones saying......The dose of requip has been upped and upped but we have requseted for it to be lowered and now it is at its lowest again..... he is quite willing to live with a slight tremor rather than confusion hallicinations and slowness of movement.......I will add that his symptoms first appeared in 1994 but he would not acknowledge tem till 2003.... Good LUck.... its a lottery out there as to who is there for you medically

#8
Hello,
My husband was finally diagnosed a year ago after a yearand a half of being told he had probable parkinsons.Its only diagnosable by its symptons.
His neurologist said,stay off the drugs as long as possible,but if you are losing your independance,then thats the time to start.
The problem is,he is now fearful of starting medication,and has lost his independance.
Every body is different.Best to discuss with your neurologist.
Good that you have joined a group.Get as much support as you can!
I wish you all the best.
Classic fm

#9
I have had Pd for about forty years, I know I was diagnosed 33 years ago,I inherited it from my late Grandma. I have found that in comparison to other types of PD, that because I inherited it I don't actually remember how old I was when I first noticed anything different. Looking back I guess I had mild symptoms in my late teens. I don't recall when I first started on medication because at the time inherited PD was in only a very small minority. I was actually diagnosed by a Dr.Godymn Austen at Nottingham University Hospital in my 20's. But I didn't really take medication for a while apart from something to help with attacks of anxiety. Probably due to people thinking I was drunk because it was hard to convince some people that I did actually have PD at such a young age. A lot of people thought I was simply drunk when I started falling outside. The worst episode was when Social Services were brought in to assess me to determine I was a fit mother, they did not believe one so young could have PD. I reckon if my two lovley children were my entire world had been taken from me, I would not be here today.The only good thing about it is the progression is very slow. But I just get on with my life now best I can, but I have taken meds for quitew a while now, and I am glad I have them, or I do not think I would cope.

#10
Thank you so much everyone for such detailed and helpful replies. I appreciate every one of them.

Clearly, when to start medication is a difficult decision with different neurologists giving different advice. I was referred to a different neurologist last Tuesday for a second opinion. She appears to be the acknowledged expert locally and by her own admission, strongly believes in early medication ("all my patients rattle")! She seemed to say that almost every aspect of my body, personality and movement was down to Parkinson's and that I need medication immediately. I saw my GP today about another matter and reported what the neurologist had said. Without commenting, my GP's face clearly indicated that she was surprised and disagreed about medication.

I am, therefore, still undecided and intend to take my time deciding. I next see my regular neurologist in May.

Once again, thank you all.

#11
dj47
It seems such a difficult decision at the time, but I presume you will start one day. There certainly are disadvantages to meds but these are some of the benefits i found. Aches gone, eyesight improved, can write again, can walk normally, gut movement improved, thinking speeded up, talk faster and louder, mood improved. I can tell now when I need meds as most of these symptoms reappear. I particularly notice that I feel stronger mentally and emotionally when I am well medicated.
Good luck.