Hi, having a number of symptoms over a number of years I think the problem is getting worse. At Christmas just gone I started to get a very bad shake in my hand and arm like it was going round in circles.
My walking has faltered my face started to twitch head bobbing can't find words etc.
My gp and my wife both said it looks like parkinsons. Any advice anyone, I'm due to see a movement disorder clinic in may.
Write down all your symptoms, when they happen, and how long.
Write down any questions you have for the DR. Email it to your dr so he/she can preview your case.
It is not the end of your life. I am 62 10 years with Pd and enjoy a full life and see no end in sight.
Bailey
Thanks Bailey I'm only 46 and I have started a diary.
It's getting me down a lot so just want a dx really
When you get dx, you'll know what you're dealing with. If it does turn out to be PD, like Bailey said, it absolutely isn't the end of the world.
thanks, I thought my life was ending, good to read positive remarks
Thanks Stevie3 any help and advice is most welcome
if you do have PD, this is a very helpful website because the majority of us are living with PD. I have found the experiences people share on here invaluable. There all all sorts of practical tips and bits of information.
I was 46 when I was diagnosed & like others have said, it's not the end of the world. I am now 58 & most people can't tell I have PD. Exercise is very important, especially intense exercise. I've been doing non-contact boxing that's strictly for people with PD (PwP's) for 9 years. Check out the website & feel free to ask me any questions. rocksteadyboxing.org.
Debbie
LISTEN TO LAGLAG
Go Private even if only for your first consultation, then make your decisions for the future treatment/melds etc. My husband is the PWP, he brushed it all under the carpet for a long time, until he eventually caved in.
He had to wait 16 weeks for a NHS consultant appointment, and was told he may only see his side kick or a nurse!!!!
Don't waste more time you have wasted enough, times to precious, your so young, get the best, even if you revert back to NHS which you should be able to do without problems.
If further tests are needed you can have these under NHS,and still see a private consultant.
My Husband was dx on his first consultation, and after meds/etc, he was like a new man within 6 months.
When you get to a certain level of heath, you can then start to excercise and make a big difference to the way you are at present.
Where do you live?
I'm over in Ireland and due to see a movement disorder clinic in Dublin in may.
My gp put me on pramipexole already two tabs a day.
Hopefully I'll see the main man who is a parkinson specialist.
In May? Personally, I would go private.. I agree with allofatremor. Good luck!
In May??! If you have the option of finding someone qualified that you can see sooner, do it. That is a long time to wait for a Dx!
The health service here in Ireland is not the quickest and I've been told I'm lucky to be seen that quick
Kemplin, I also have a friend with PD, she lives down south, ( i'm in uk ) she actually got Dx at the same time as my OH. She had that many tests, and I mean loads, she swears that her GP is the best.
Since she was Dx she was shaking, trouble walking, slurs her speech, shes slightly better now on some meds, but not like my husband who is doing remarkably well (touch wood).
I discuss her meds with her over the past 3 yrs, she's not taking any of the meds my husband is on??? she is just about to try the patches (my husband has already been on patches 2yrs) She had to change her car for an automatic 3 yrs ago, she is now finding driving very difficult.
I cant praise my husbands Neurologist enough, he sees him 6monthly now. I cant believe her progress, she seems worse now then ever.
I have given her the details for my husbands specialist, and I have convinced her to travel up country to see him, even if its just to get her on the right meds.
I could be wrong my OH and my friend are 2 totally different cases, and PD is different for each individual, but if I hadnt got the help for my Husband when I did, and if he hadnt responded so well, I'd travel to the ends of the earth to get the right treatment, and the best specialist.
We watched Billy Connelly last night receiving an award on TV, and it was so sad, he looked so dragged down, empty, and lifeless, but surely he has had the best of treatments?????? heart breaking.
Dont wait till May, go private, over here you can get an appointment within 2 weeks, its probably the same in Eire, the initial consultation was around £300 and £165 for each follow up, and we still get the PD meds on NHS prescription through our regular GP.
Also any tests the the Neuro carrys out can be requested through your GP on NHS, I dont know how your health service works in Eire???
I was told many years ago that the best Neurologists in the world train at Dublin???
good luck xxx
kempin
be careful not to be too taken up by generalisations about PD. Each case is unique so
concentrate on what your neurologist has to say about you personally and how you should approach your treatment.
it seems you have left the problem unattended for a long time. Tremors, gait and confusion all points to Parkinson's. Please go and see a MDS or Neurologist and go for MRI scan of the brain. IF it is PD, Medication will stabilise you in couple of days. After that it will be daily doses of SINEMET.
Thanks for that
The health service here in Ireland is not the quickest so the earliest apps I can get is may
KEMPIN1969,
You might want to call the clinic & tell them you feel your symptoms are getting worse & ask them if there are any cancellations to please get you in sooner. May is much too long to wait. It could be something that needs attention & meds would help in making you feel better sooner. Couldn't hurt. Good luck!
I too fear that I am progressing more rapidly ...I have taken the Sinemet.Seligine/Gaba for a while now (diagnosed in June 2014) and fear that the 5 year limit for the above treatment with the meds will soon not be effective. I don't have a constant tremor, just once in a while, am suffering from balance problems, an ulnar nerve problem that has affected my left hand, and I am very tired. I have not been religiously exercising though. Maybe therein lies the possibility of holding back the onslaught of this awful disease.
Thanks
I've not been diagnosed yet but my gp says it looks that I have it.
My tremors happen sporadically aswell so I was thinking was it something else but all the info I have gathered tells me it looks like I have the disease.
I fear my response landed elsewhere....Hope not, because it was rather personal, and addressed to your post.
iT STARTED (VERY UNKNOWN TO ME) MANY YEARS EARLIER.....I WOULD FEEL A 'TORSO SHAKE' WHEN TALKING ON THE PHONE AND GETTING STRESSED FOR SOME REASON, MOST OFTEN BAD CONVERSATIONS WITH MY EX OR GOOD PROFOUNDLY DEEP CONVERSATIONS WHERE I WAS IN AGREEMENT AND MOVED. Then, I remember having to take Zyprexa, because, being a type A personality and pretty intense and sometimes ideas pour forth rapidly...I looked up the side effects and saw that dyskinesia was one side effect, and I had noticed a very fast, almost buzz-like tremor in my right hand...was told that it wasn't the drug or Parkinson's by the psychiatrist...time markched on, and I still had this tremor, bigger now, and a difficulty controlling handwriting-big and sloppy....was misdiagnosed with having something else...and given a blood pressure med. Increased problem over time...had an MRI and the results were conclusive...became very depressed, and hyper aware of any 'symptom' that arose-usually symptoms that were not related to PD..but symptoms that forecasted the onset of more of the same showing up...listen to the doctor, and I suggest to finally KNOW, have an MRI (demand one if your insurance pays for it).
I am just now coming to terms with the illness, and reject the acceptance that I hear from others....they have often times have not done any research, accept docilely the M.J. Fox PC stance-I know, he IS proactive and all-research etc., but his "My life is better with Parkinson's" BS...he must have experienced a pretty mundane life bereft of real thought in my book. Anyway, I don't want to go on and on....Get an MRI and KNOW what is going on....Or is not realistic, read up on the PD....It is good that you are on a support site...I didn't avail myself of this-all meetings were peopled by those in the late stages of the disease, very old, frail, and not into talking about realities of the disease-the losses one suffers, the learning to actually LIVE as close to possible to life before PD-so much time has to be spent in exercise, massage, etc....I find it interrupting things that I love.....Appreciate your dialogue-you are the only person I have talked to on this site....Take Care...Laurie
Thanks Laurie
I'm experiencing new symptoms every day latest one my finger flickering
The health service here in Ireland is not the best and very long waits for any consultation
And may is the best I can get
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