Overwhelmed


#1
I have been told I have parkinsons, I have lots of leaflets, a Dat scan has been booked for me, I have tremmors in one arm and just started having severe toe cramps,where do I go from here? what can I expect? all the leaflets and websites are ok but its not actual people that have been through it all.

#2
Hi Ellie

I was diagnosed exactly 2 years ago and so far, with the help of medication - mirapex ( pramipexole) .75mg 4x/day and amantadine 100mg taken at the same times - I lead a relatively normal life. I have been lucky in that I do not suffer any side effects from either drug (you should be careful with the mirapex or any dopamine agonist as they can cause serious side effects).

I started out like you with a tremor in my right hand/arm and severe cramps in my lower right foot and leg. My handwriting was terrible, I had trouble swallowing and later had problems with excessive saliva. My GP referred me to a neurologist. My first neuro said I should stay off drugs until absolutely necessary; my second neuro's philosophy was (is) to get the best out of life while you are young - so take the drugs. I went with the second neuro. All symptoms have gone now and only reappear when I forget my drugs.

This forum, and the good people in it, has been a valuable resource and inspiration. You will see some of them have had PD for a long time and still lead relatively good lives. Knowing that has helped me think positively.

I remain optimistic about my future and I think that outlook is very important to managing the condition. So, get some good drugs that work for you, exercise at least 4x per week, and keep your chin up and believe there will be significant breakthroughs in the coming years.

If you want to read about my journey, my blog is www.wpgchap.blogspot.ca. Writing in it is cathartic for me and I try to write at least a couple of times a week, detailing my progress. (Nothing commercial on the site, just one man's diary)

Best wishes and welcome to the community.

#3
I had about the same experience with the neuros. I went an entire year with my symptoms getting worse and me thinking that this was the way my life was going to be. I was so glad when I went to another neurologist and he put me on medicine that has relieved me of all symptoms and I feel normal again. My attitude is great and I know that if I exercise and take the medicine life can be good.

#4
Hello Ellibells

You are probably still trying to come to terms with the news that you have PD. With me it didn't sink in for some time. I kept thinking in my head that someone had made a mistake. Really don't know when I did accept it, but luckily I have a fantastic PD nurse specialist with whom I am able to share all my worries. Find out if there is a PD nurse in your local hospital / GP Surgery and have a chat with them. It does make you feel better when you can talk to someone who knows about Parkinson's. You ask "what can I expect" - well all I can say is that everyone is different. What meds work for one person may not indeed work for another. It really is trial and error. Being optimistic and positive does help. wpgchap's post is sound advice.

Kind regards


Powrie

#5
wpgchap

Just realized who you are. I am enjoying reading your blog. I got your website from the other forum. You are a very talented writer. I will be visiting Canada for the first time this summer. I cannot imagine how cold it is there now.

#6
Hi there and welcome.

Let's not beat around the bush, everyone feels confused and disorientated when they are given the diagnosis. My advice to you is to do.....nothing yet!

You've got loads of time to learn and absorb the facts about your condition. Many people have fears that aren't grounded in fact or are simply wrong.

I've been diagnosed a few years now and. even though PD isn't fun, it's manageable

Best wishes
Chris

#7
@Floridagirl

Thanks for the kind words Floridagirl. Canada in the summer is fabulous. Where I live, temperatures rival those of Miami, but without the humidity. We go to Florida (South Beach) for a few weeks each year (Feb & Mar)to enjoy a touch of summer in the middle of winter.

@ Spam

I agree with everything Spam wrote. PD makes life a little harder, a little slower, but it is manageable. I watched an interview with Michael J. Fox and aside from a little dyskenisia, he seemed to be good and he was diagnosed 20 years ago. I am looking forward to his sitcom.

#8
hi ellie

you asked what to expect no one can possibly tell you that pd treats us all differently symptoms maybe similar but not exactly the same as other people, i was dx 10yrs ago and luckily it is slow progressing although i have now had to give up my job which i loved but thats life but apart from that i do most of the things i used to do i have joined my local support group and have met some lovely people we are always having outings i go to tai chi and hydrotherapy once a week it has helped since i finished work, please dont think its all down hill after dx its not the meds will help its getting the right combo i decided not to take any meds for the first 4yrs but then finally gave in and new i needed them but only you can decide hope you dont let it beat you because you may have pd but you are still you good luck. sue.

#9
Well I have now met my PD Nurse she has been very helpful and given lots of information on how things go from here, I feel less confused and feel more relaxed than I did.
Next thing is the DAT scan on feb 12th and will be off to meet other PD people on the 7th feb looking forward to that.
Brenda:smile:

#10
Hello, elliebells --
My case of PD is much like wpgchap's. It began 15 years ago. For the first few years I took no meds; then I gradually started on minimal doses of those my doctor recommended. My life is still normal. In fact, today I returned from a holiday trip to Yellowstone National Park in Wyoming with 17 other tourists. Not one guessed I have PD, even though three said later that they have relatives with it!

Glad to hear you're feeling more relaxed now. Optimism and exercise are crucial. Best of luck in this adventure none of us chose!

#11
Dear Ellie
I was dx four years ago and still remember the shock of that diagnosis. As far as I was concerned PD was something old men got, not 50 year old, fit and healthy women like me! It took me about a month/six weeks for it to sink in. I had the inevitable knee jerk reaction of "he's wrong, I can't had PD" to going madly organic, including shampoo, conditioners and cosmetics, but everything gradually settled down as I came to realise that I was still exactly the same person and nothing had changed apart from a shaky left arm and a stiff left leg that makes me limp a bit. Four years on I'm still the same and am not going to get any worse I've decided! I really believe a lot of it is in the mind and a positive mental attitude is one of the best ways to fight this bloody thing. They call it "the designer disease" because it's different for every one who has it so no-one can tell you what is going to happen. Maybe it's as well not to know? Whatever happens I will meet it head on and fight it all the way! Good luck to you in the future and remember, stay positive!
Jane

#12
hi ya welcome to puk,im ali been dx 12 years,im 43 years old.i found by joining a pd group in the area meeting people in same postion as me helped me so much.now i no it not some peoples cup of tea cus they get scared .i do understand this,cus i did me self if im honest.but if you have close family member or a good friend to go along with you,you will learn so much more,and meet some amazing friends.it not all about pd,they have fun outings etc as well.worth alook into.your pd nurse or neuro can help you find were nearest one to you is.if this is not the best thing for you,well there are many good friends on here who will chat,there is a great deal of surport here,and alot of information.:smile:

#13
Hi Elliebelles.
Iam Lainimac and I had a similar experience to you. My PD started off with a tremor in my arm. I was overwhelmed when told I had PD and could not see any future. But that was eight years ago with the proper medication, support from your PD nurse and others within the forum I have a positive attitude and live a realitively active normal daily life. There are times when I overdo it but I now know the signs and slow down a bit. Keep positive and see it as another challenge in your life. Take all the help and support on offer and Parkinsons UK is an excellent way of keeping yourself uptodate