New member


#1
I`m David-51 yrs old.Newly diagnosed.Just coming to terms with diagnosis
Due to start Dopamine agonists regime soon.

What good advice for the next few years has anyone
got?I still work full-time in Leicester and am taking a positive attitude at present-
although my symptoms are fairly mild at present (eg poor handwriting,mild shake of right hand at times)

Thx

#2
Welcome jfox - like you I am 51 diagnosed in April 2012 started on Dopamine Agonists in April appear to be helping the tremor in left arm. Not sure if I have any good advice as just at same stage as yourself. I have attended a local PD meeting and have met some very nice folk. I think the best advice is to stay positive and deal with each day as it comes. Hope to see you around the forum :smile:

#3
Hi Bethankit

Thanks for your welcome to the forum.

Are you pleased with your medication so far-
or any side effects?I`m not a great believer in
drugs but I guess I`ll probably need them.
Acupuncture has done wonders for my frozen shoulder-
a precurser to being diagnosed last week....

David

#4
Hi jfox

welcome to the forum. There are lots of people here that can give you advice and support.

I was diagnosed in March 2011, it came as a huge shock to me, I wasn't expecting that news.( should've been, but wasn't).

Then came the nightmare of the medication. I am one of those people who cannot tolerate dopamine agonists.

I started off with Mirapexin , which made me feel like death. I put up with it for six months,hoping things will settle down.

My neurologist then put me on Requip, it was such a relief not to feel sick all the time, however, once I got to the dose required, I suffered with sleep paralysis, hearing voices, visual disturbances ( beautiful sparkly vision) so had to stop taking them.

I have been referred to Parkinson specialist who I'm seeing next week, in the meantime they're trying neupro patches, well apart from the fact they itch if i put them anywhere other than on my arms, they give me a huge feeling of pressure in my head and make me feel sick. they do however help with my handwriting and have reduced the tremor.

I am still working full-time and my employers, following an 'Access to work' assessment have put a number of adaptations to my workspace to make it a bit easier for me. I have Dragon software ( voice activated) I have a new mouse and a special keyboard,

As I visit nurseries and preschools as part of my role. They have also given me a voice recorder for those days when I'm not able to write. I have recently been promoted to the role of supervisor managing a team of three other people.

This is despite knowing all about my Parkinson's. They value me and the work that I do which I really appreciate. I aim to continue working for as long as I can, and at 53 am aiming for the normal retirement age.

I think the key to managing this condition is to try and be as positive as you can. not always an easy task, I know. be aware of your limitations, let people help you, but don't become an invalid. I am a fiercely independent person and aim on staying that way it was long as I possibly can.

Good luck, I really hope you're one of those people who thrives on the medication, because there are plenty of people that really benefit from them.

Caroline

#5
Hi Caroline

Your advice was really interesting-thanks.
I admire your independent spirit.
Are you an Early Years Teacher by any chance?
I have a similar job-a peri teacher of Hearing-Impaired
children.My employer will be supportive says my line manager,
which is good.I aim to carry on as normal.
Like you I am positive-but worry about the drugs and the future-
am just in the process of telling friends and family which is hard.
How did you manage?

David

#6
hiya jfox welcome to the forum,im ali been dx for 11 half years im 43 years old,i am on mirapexon and sinemet,me mira has been dropped down now though cus couple years back i was havin bad side effects to it,it was the dropped,and then increased agin by a different neuro when i changed neuros.i got messed up big time.but you will hear alot of storys about da drugs jfox,some can tolerate them and some carnt,i was one of the unlucky ones,like i said im on them but only 3 a day now and i can cope with that.there is a lot of surport here on puk,and nice people to make frieds with ,i wish you well,and hope to see more of you around the forum :smile:

#7
Hi David,
Welcome to the forum.
I started mirapexin 2 years ago, held out until I really needed meds, kept my dose as low as possible and only increased it as I needed, within doctor's guidelines, and meanwhile did everything possible to keep well and strong - exercise, rest, good diet, try and get enough sleep, practice whatever is difficult in order to complement the meds (for me it was walking and writing); that way you'll feel more in control. Read up on DA side effects so you are well informed. I been on mirapexin 2 years and have been lucky in that the only side effects I had were occasional fuzzy headedness in the first 6 weeks, and my sleep was affected for a while, but that gradually righted itself and it was worth it for the massive improvements in my body. I'm now on 2.45mg/day and that works and has done for 18 months. I'm 40, had PD for 7 years, still work full time.
Best of luck - ask lots of questions, listen to your intuition and your body to determine which meds will be best for you. Be demanding of your doctors - that's what they're there for!

#8
Hi Jfox

some advice
- do not go into a betting shop
- do not use online betting
- if you start taking an unusual interest in porn, especially illegal, or porn webcam sites tell your doctor
- notwithstanding the above, don't get obsessed with obsessional behaviour. DAs are a useful treatment for most people.

if your neuro doesn't mention any of the above think about getting a new one.

- exercise, eat sensibly, relax, etc etc

cheers

#9
hi Jfox

Yes I'm an early years teacher, who now advises the pre-schools and nurseries on working with children with additional needs, such as autism, down syndrome and a whole host of other things, I love it.

On the day of my diagnosis, I came home and rang my boss to tell her the news. She came to my home immediately and we sat down and talked about what it would mean for me personally and for my job, she was great, so supportive.

I also told all my friends and family, including all four children , which was hard. The worst person was my mum, I was so worried about how she would react, but bless her,she said " what a nuisance" LOL.

My boss had, at my request, told all my immediate work colleagues. So when I got into work the following day they already knew. That made it easier than telling people in dribs and drabs.

I have told people in the nursery settings that I visit as and when I needed to and it can be jolly useful during training, to illustrate the disability discrimination act.

I am very well aware, I've been very lucky with my employers. They couldn't be more supportive of me, they have made it clear they want to keep me and are prepared to do whatever it takes to make sure I can carry on.

I guess everybody is different, How they deal with that type of news. Some prefer to keep it to themselves as long as possible for fear of being discriminated against but my own experience the best thing I did was to let people know, be open and honest. that way I didn't have to hide my symptoms and people understand when there are days that I can't write etc.

Good luck David.

Can

#10
Welcome jfox,
I wish to endorse everything Turnip has said. He's no Graham Taylor!

#11
hI jfox and welcome I too work in the childrens workforce and have found employers to be good, I take DA's too a blessing an curse at times but they work for me heed the warning about obbsessional behaviours.

On telling family friends etc I just told them many needed explination many choose to ignore, but I regularly have to present to large audiences and find honesty best policy and start by saying that I'm not really that nervous that I have a motor disorder and leave at that, most people fine.

Advice - Dont live in the past; live for each day! ; The future is unkown to any
so dont stress about it! (follow own advice! lol)

Good Luck and welcome to our community

BJS

#12
Thanks to everyone who has replied
with some advice-it`s very helpful
to have this forum to support each other.
Clearly-not worrying too much about the future
is important.

What about the importance of involing wife/family
in decisions?

Keep the advice coming!

#13
Hello Jfox,

Welcome to the forum, I see you have had many replies with lots of good information. I think it important for all the family to know about the condition and how you are going to cope with the changes that will occur in the future. For the moment and for several years to come I hope you will not have to make many but if you make it a team effort then it will become a well managed change.
If you don't let family members know then they will know something isn't quite right and only worry more. There are plenty of information sheets that you can download for various problems but I feel that the best way forward is to carry on with life and do all the things you really wanted to do in the near future when you feel your best, and enjoy life. The fact sheets are handy when a certain problem arises, you don't need to read them all as they may not apply to you.
Several people I know have had a frozen shoulder before being diagnosed with PD, I use acupuncture for back pain and several other conditions, I was only able to keep my husband at home as long as I did because of my twice weekly treatments.
Of course they use it in China for PD.
best wishes and I expect we will see you on here again soon.
vivian

#14
Hi again jfox,

I seem to be coping ok with my medication Requip XL which is being slowly titrated probably increase to 10 mgs on Monday. I was told about all the side effects at great length by my consultant, so far thankfully must say not displaying any of them!!
Diagnosis was given following DAT scan, but the consultant had said at initial outpatient appointment that this was the probable diagnosis. By the time diagnosis was given I had prepared myself for this. My husband came with me to appointment and we had a list of questions for the consultant which were all answered sure I must have made the clinic run late my appointment lasted 45 minutes. I was working that day so after a cup of coffee with husband I decided to go back to work. I made an appointment to see my manager who was very helpful and supportive, appointment made for me to see OHS to ensure all was well in the work place and to adjust my hours temporarily. Although still on full time contract I work anything from 25 - 30 hours per week but aim for 30. I have review with OHS next week and hope to increase my hours.
I told my family and friends all of whom have been very supportive, my mam thought it was disappointing but was sure I would manage to cope with the love and support of my husband. I told my staff and they were relieved I had a diagnosis as they had been worried about the signs I had been displaying, tremor in left arm, lack of concentration, dragging left foot, feeling of left side of face being "different"
I work as a Senior Charge Nurse which I do find stressful but all my staff have been very supportive.
Sorry for rambling on but I thought it is important to be open and up front about my diagnosis because if I didn't tell I was worried folk might think I had something worse or was perhaps under the influence of alcohol.
I am sure you will make your own decisions on who to tell and when but you may find it a relieve when you have it out in the open.
Best wishes
Helen :smile:

#15
Helen

Thanks for that-you weren`t rambling on at all.
I agree that it`s probably best to open and honest
about it with people and I`m glad your work colleagues
appear so supportive.

I am now starting a much healthier diet (no alcohol) and
with plenty of exercise (going swimming everyday has already helped
my frozen shoulder as has acupuncture).What about you?

Keep in touch

David

#16
David

I had a frozen shoulder last year and had surgery and it was during my physio after this that the tremor started.
I try to eat healthy but don't always succeed have a sweet tooth and at times crave chocolate and at work there always seems to be some on the go.:smile:
I walk every day but thats probably about the extent of the exercise.
On of my colleagues in the hospital gives accupuncture and she is wondering if it would have any benefit for my shoulder pain.
I am now off for the weekend, going to visit in-laws in Cambridgeshire, back to work Tuesday so looking forward to the time off.

Best wishes
Helen

#17
Helen
I would definitely give acupuncture a try.
I was in agony but after 3 treatments was
in no pain with much improved range of motion
.Amazing Chinese lady.Have booked
a further ten treatments with her for PD as she
says she can help.She combined the treatment with
"cupping" and Tui-na massage + herbal medicines.
Very holistic approach which makes sense.

Just wondering now if I should wait a while before
starting dopamine agonists-or will it help my shoulder
to improve still further.

Enjoy your weekend-where do you live by the way?I live
in Castle Donington near East Mids Airport.

David

#18
Hi David,

I live in Aberdeen but originally from Morayshire. Moved in 1979 to do my training always planned to go back but enjoy Aberdeen and never moved.
Think I will give acupuncture a try. Not sure what to advise about you starting meds perhaps be guided by your own body and what your consultant recommends.
Hope you have a good weekend with your family.
Helen

#19
Hi David,

Welcome to the forum. I thought I would put forward another option that you have at the moment. Quite a few on this forum have taken the route of no medication until absolutely necessary. You say your symptoms are quite mild at this point in time, so you are in a situation where this could be the wisest option according to the two neurologists I have seen. Both hold the opinion that many of the drugs in use could be neurotoxic, especially in the early stages of PD. There are two camps of opinion on this subject. Obviously, each to his own, but some on the forum have opted to hold out as long as possible when it comes to taking medication, and seem to have benefited from other treatments.I am one of them.

I hope this gives you food for thought. All the best, Butterfly.

#20
The toxicity of PD treatments is very complicated and confused and I do not believe there is a consensus amongst neurologists.
There is even some evidence to show that DAs are neuro-protective
http://onlinelibrary.wiley.com/doi/10.1002/ana.410440117/abstract
I have not seen any evidence of the toxicity of DAs to neurons.
Levadopa should be toxic going by tests in testtubes. However scans of people who have taken it don't seem to back this up.

My 'umble opinion is -
- in the long run it doesn't really matter, the delay is a most 2 years (as always there are exceptions!)
- all the evidence is statistical but it is quite likely that any individual is not in the centre of the statistical curve - so it may not apply to you anyway
- if my symptoms were very mild I would not take any drugs - because they are a pain in the a***. You'll be on them for long enough!
- follow your stomach - there is a lot to be said for gut instinct