New girl


#1
Hi, I'm new to this website and the forum. Having been diagnosed with PD in February this year, at the age of 40 I now looking for some additional information and advise from peope who have been through the same. My dad was diagnosed with PD at the age of 60, but he is now suffering from dementia and alzheimer's too. I am scared about my future and how quickly the PD is going to progress. My daughters are 5 and 3 years old, so of course is my family I'm worried too. My first symptoms started 2 years ago, as soon as I have returned to work from maternity leave. I have noticed that my computer desk was shaking...well, turned out it was a tremor in my left leg. Now the tremor is in the left hand /arm. When I'm NOT stressed or excited (when watching TV for example) it's less noticible, but always there. I have other symptoms too, but generally I am an able person and trying to stay positive. I'm working full time from home, luckily my employers have been very supportive. I saw a very good neurologist and as a result I'm now engaged with some PD research because I'm not on any meds. My delimama is exactly about the medication, I'm very reluctant about starting it because of all the side effects...What's the general opinion for the younger onset of PD? Is it wise to delay the medication until PD becomes more disabiling? Are there any affective suplements or diets I could follow that will help me in the long term? Maybe alternative medicine? many thanks for any help in advance.

#2
Hi violet,

Welcome to the forum, im pretty much in the same boat as yourself although my tremor is in my right arm and so far hasnt progressed [::biggrin:: im 44 muself and my tremor started bout 18 months ago. I was wrongly dx as havin an essential tremor initially.

I saw my neuro 2 weeks ago and je suggested I try rasagiline for my stiffness in neck/arm, he said it prob wouldnt help my tremor and I have to say he was right. I think the general consensus is to stay off meds as long as u can, my neuro said that because the meds for pd are toxic its best to delay if at all possible!

Im still workin full time too and I try to remain as positive as I can, my advice iis to listen to your neuros advice and be good to yourself, i usually find a wee nap in evening makes me feel alot better.

Hope this helps, this forum def will, theres a wealth of knowledge and good people on here xx

#3
Hi Violet . Sorry you find yourself here but welcome. I was diagnosed last year at age 46. My children were 5 and 7 and I am a single parent. I work for myself. Yes it was scary.

I decided not to take any medication . I feel fine actually. I have very slight tremor in hands and legs intermittently. My own view is that I want to stay off current medication on the market as long as I can.

I started a thread about what others do -alternative treatments and exercise. I will find it and add it in another post.

What I have done is up my exercise levels and do exercise that makes my brain think - not just mindless running. I read of research that had shown that the brain was helped to learn to work better with lower levels of dopamine -sorry I havent got the link. I do think exercise really helps.

I also have regular reflexology treatment - I know an exceptionally skilled and effective practitioner. If you are in London happy to give details if you message me. I know other reflexology practitioners who have no effect on me whatsoever. This reflexologist has stopped the pain that flared from time to time in my neck and down my arms.

I hope to get on the Stage 3 tests for a drug called Cogane next year if the stage 2 results are good. SOme of the earlier results for this drug were very promising.

I have also got access to aa dietary programme which is run by a poster on here. I will find the link for the website for this too.

It is worth reading some of the posts by a poster called BeauxReflets on here which are intresting on physiotherapy, diet etc.

I will return later with the links :)

#4
http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=health-and-wellbeing&topic=what-alternative-treatments-exercise-and-special

and the dietary programe is this:

I havent started as I have been having such good results with the reflexology but do intend to in future: http://www.brainhelp.info/why.html

#5
sorry the internal link doesnt work - in Health and Wellbeing look for topic called this: What alternative treatments, exercise and special diets do you do

#6
Hello Violettaioc

Welcome to the forum where you will find a lot of support and information which will help you manage this condition.
My husband has had PD since he was 39 yrs and he is now almost 69yrs, although he is not so well now, he has had a very busy life since having to give up work with many hobbies and starting a branch as well as being a member of the younger group for many years.
Keeping fit and keeping the brain matter sharp will help you cope, you also mention other therapies, acupuncture is also very good for pd and is used a lot in China for PD. I have it for my back problems and many other things, it has kept me going for years.
There is a lot of information on the PD web with plenty of fact sheets including book for children, when you think it is the right time.
best wishes
vivian

#7
hi welcome to the forum,im ali,ive been dx for 11 half years,im 43 years old.there is good surport here and nice friends to be made.im sorry to here about your dad,and aslo your self,hugs x:smile:when i was dx i was put on stavelo,it seemed ok at first,but i then suffered with constipation real bad.im on sinemet and mirapexon at the momment.they say sinemet wich is a leveopda drug is the gold standard of meds.there has been a few new members that have joined latley not nowin if to go drugs or not first,and it very hard to advice,cus we are all so diffeernt to one a nother.i found exercise helps alot,it very improtant to keep mobile as much as possible,it helps your joints and ridgerty.it depends on age,your symtoms,lifestyle,if your working,or not,your phiscal health,walkin ,balance etc.you will be monertered closley by nero.but end of day like i said it your descion wot you do,its your body ,your mind.eatin a healthy diet,helps with everything in our lifes,so agin with pd it helpful to do this,along with the exercise.please keep in touch,there lot surport like ive said,and the help line here on puk can guide you as well.good luck x:smile:

#8
Hi,
You have many similar questions as I had when diagnosed. I was 35 when given the news now 39. I was determined to keep off meds as long as possible, did plenty of exercise and went once a week to physio at local hospital. But needs must, I suppose i started taking medication when I thought people were noticing, purely in the hope of covering it up. Me, a mid 30's lad with an old mans disease!!!!!!!!!!!!!
Anyway i'm now been on medication since I was 37, slowly increasing doseage. Be honest with your specialist, mine is fantastic, he advises and basically gives me options on what i should take and when i want to increase etc.
All i would say is keep your dose low for as long as possible, vary times you do things, but primarily keep exercising, biking, swimming, walking, running etc, it helps more than you'll realize. Finally my father to had PD he was diagnosed at 53, also my grandfather as well diagnosed at 68. If you can remember what your father did and didn't do, use his experience as a learning curve for yourself.
Keep your chin up, feel free to contact me anytime.

#9
Dear All, thank you all for you posts and kind words, this is really appreciated. I will try to respond to all soon, just having a very busy time at work this week...I could do with holidays :grin:

this Forum is abosulutely great, so helpful...I will make sure I try to visit it on regular basis and go through some of the older posts.

off to get a cup of coffee and enjoy the little bit of sun now.

#10
I was a bit older than you , 52 when diagnosed but very similar symptoms. 6 years later I remain off medication and am much the same still working, driving etc:smile:. I too recommend all the basic look after yourself stuff; good nutrition, plenty of sleep/rest,fun, meaningful activity, exercise of diiferent sorts. Bowen therapy has helped me in terms of general well being; I have it every 3 weeks now and can feel when it's wearing off and I need another boost.
Good luck exploring what works best for you and fits best into your life so that PD doesnt rule it.

#11
Hi, I was diagnosed three years ago age 37. Had symptoms for 4 years before that. My PD is all in my left side and I started taking meds when my leg was very badly affected I could hardly walk any more. Meds have been great and now there are lots of times I can't feel PD at all. I increased the meds in tiny doses and did lots of exercise, healthy eating, etc etc in the meantime, and practised walking properly every day for months as soon as I could do so, I believe this helped my keep the dose of meds as low as possible. I too use Bowen which I find incredibly relaxing; cranio-sacral therapy for bad back; basically any symptom I had I sought a therapy in addition to meds that would help. Still working full time, but if not for the meds I would have had to go off sick. I'm fotunate, no real side effects, nothing that lasted anyway. I never thought the improvements I have experienced were possible when I was at my worst, so try not to lose heart, half the drugs weren't around 20 years ago and so who knows what they'll come up with when we're 60 and still relatively young with it.. (I hope!).

#12
Hi Jo72, just curious, which drugs are you taking?
thanks
Ania