Just saying hello!


#1

2013 – the year I celebrated my 50th birthday … and got a diagnosis of PD.  Still trying to unwrap this particular gift!  I have never joined an online forum before and feel a little apprehensive.   At the same time I have found reading posts from others a great source of information, inspiration and help.  So, I thought I should at least say hello and thanks.


#2

Hello, Spangles, and welcome!

I have had PD 16 years, but as I read your post, my day of diagnosis seemed suddenly as if it were yesterday.  I remember the stunned feeling, the dread of what the future might bring, and the sadness at thinking how my husband would feel.  For a week I was really distressed and felt as though I were mourning my health.  Then somehow I found acceptance and came to consider my new ailment as a "gift," as you said above.  My job, I thought, was just to figure out what to do with this gift.

Thanks to an effective balance of medications, my general optimism, and lots of exercise, I am still living the same active life I was living before my diagnosis.  My symptoms are still so subtle that people I meet don't notice them and are surprised to learn I am a PD sufferer.  Like you, I had never joined a forum prior to this.  But since I have been participating in the UK Forum, I have seen at least one use of my gift: with my good fortune in living 16 years with PD still in its first phase, I can give hope to newly diagnosed patients.  My initial diagnosis came from an idiotic neurologist who gave me false information about the symptoms of PD and told me I'd be in a wheelchair within ten years!  It would have been most helpful to have met then someone who could say, "Look at me.  I'm going strong 16 years into this thing."

Again, welcome to the group!  I'm sure you'll enjoy being part of it.

J


#3

Welcome also Spangles

Yes, I too had never taken part in a forum before my dx. Perhaps I was waiting for the right "community of interest" as the sociologists call it.

One advantage of PD, if you must have a disease, is that it varies so much from person to person. So how you feel and react is right for you. I think I'd join you in saying, 15 months on, I'm still working out how to react to this gift. I'm not as accepting as J, though, and I'd mean "gift" very ironically. If it was Parkinson's gift he can jolly well have it back.

I too have been humbled, and helped, by posts - and maybe one or two of mine have helped, too. So I'd encourage you to continue posting now you've broken your duck.

BTW, still trying to work out whether you're "apprehensive" about posting, or about your dx. Or maybe both.

best wishes

Smele


#4

Hi J of Grey Cottage and Semele,

Thanks for your comments.  J, it was heartening to hear your optimism and I can only hope that my PD progresses slowly and I can maintain my optimism too.  Semele, your comment about giving the gift of PD back made me laugh – if only! – maybe one day but for now I guess it’s more about how we respond to the challenge PD brings.

For me my dx is so recent that I’ve not given much thought to my long-term future, partly because that’s a bit scary to think about and partly as I’m trying to adjust to how things are now.  I’ve been unwell for all of this year and looking back I now recognise various symptoms that have been around for the past few years.

I first went to my GP with back pain and decided to mention a few other ailments that were troubling me – which in themselves would never have taken me to the Dr.  Amongst other complaints were tiredness and feeling slowed up – things I’d put down to ‘old-age’!  After pursuing a couple of blind-alleys including ‘maybe it’s stress’ or medication side-effect a locum GP thought my walking was suggestive of PD and referred me to the movement clinic.  When she mentioned PD it was like being slapped on the face with a cricket bat – that wasn’t on my radar for sure!  I started reading about PD and realised it was something I knew nothing about.  Before then I regarded PD as mostly characterised by tremor.  I was being told I had PD but I have no resting tremor.  The more I read about PD the more I recognised my own symptoms.

My first visit to the neurologist led to a dx of Parkinsonism and after a positive response to meds this was changed to PD.  I was started on Sinemet Plus with increasing dose over several weeks.  By the time I was taking 2 (25/100) three times daily things were hugely different.  I was moving much more freely and practically skipping down the road.  I’d gone from feeling like 80 to 30.  The change wasn’t just in movement – my mood improved.  I was more optimistic and had more motivation to tackle work and recreational tasks.  The downside has been associated feelings of agitation, anxiety and unintentional movement.  My legs were constantly moving – if I’d attached a squeeze-box to my knees I’d have played a tune, though it would be more of a non-melodic wail than anything else.  When lying down I found myself doing abdominal-crunch type movements. 

The dose has been brought down again. This has eased but not resolved the agitation and has resulted in me feeling more slowed-up again.  Appointments coming up soon with PD Nurse Specialist and Neurologist so I hope we can make progress in getting the right balance of meds.  The point is it is difficult to think about the long term future before things are more settled right now.  I suppose it’s about coping with uncertainty.  So to answer your question yes I’m apprehensive about my dx and my future – regarding apprehension about posting, yes but posting this ramble may go some way to resolving that. 

Thanks again for your welcome to the forum.

S


#5

Spangles --  Just a few thoughts I feel I should communicate . . .

I have no medical degree and only limited experience with PD, but I know that the involuntary movements you refer to can be caused by Sinemet.  I was more than 10 years into my case of PD before any of my doctors suggested trying Sinemet.  Even now, I am aking a small dose.  Mirapex or Pramipexole is more commonly the first med tried in the US.  (It reversed all my symptoms without side effects.)  But perhaps different countries follow different routes.  Your own doctors and Parkinson nurse are your best sources of information.    J


#6

Thanks J,

My neurologist had recommended Sinemet rather than a DA because my symptoms were quite severe and having an impact on both work and daily functioning.  I think there may be a process of trial - feedback - and adjustment here.  Just glad I have only a few weeks before review. 

S


#7

Hi Spangles.

I have been on SInemet Plus for about 6 years now and like you I used to suffer from really bad involuntary movements (dyskinesias). Sometimes it was so bad that I couldn't keep still at all, and when I went out I could feel people staring at me. The only way to control it was to reduce / delay my Sinemet dose, but the impact of this was that all my movements slowed right down, so it was debatable which was worse. I was just about managing at work, but it was a struggle!

Then about a year ago my GP referred me to a different neurologist at a different hospital, because I'd been unhappy for a while with the treatment I'd been receiving from my current hospital. At my first appointment we discussed DBS because I was beginning to think that this was my only option, but then the neurologist  suggested that I try Topiramate (25mg  twice a day).Topiramate is a drug which is usually prescribed for epilepsy but it has been found to have beneficial effects in some PD sufferers. It doesn’t work for everyone but I have to say it has certainly made a big difference to my life! It hasn’t stopped the involuntary movements completely -  I still get them occasionally, usually when I’m stressed or nervous, but it's much, much better than it was. I feel (and look) much more 'normal' and people no longer stare at me, wondering why I appear to be "dancing in the street"!

I’m now taking 50mg Topiramate twice a day. It's improved my involuntary movements so much that I've decided to put DBS on hold for the time being. It may not work for you or you may find that your GP / neurologist is not prepared to prescribe it, but it may be worth a try?

Best wishes.

Kathy


#8

HI Kathy,

Thanks for telling me about Topiramate and how this has been helpful to you.  I'll keep it in mind to discuss at my neuro appointment.

Best wishes,

S


#9

Welcome Spangles I too received that particular 50th birthday present 6yrs ago! and take Sinnemet plus/ DA's had an unfortunate effect lol, you are in a club whose membership is involuntary but the membership by enlarge are caring supportive and knowledgeable hope you find some peace in your 'gift; it does bring with it insight and self awareness but I dare say you would rather have joined a meditation group and passed the talking stick lol .

BJS


#10

Hi Spangles.

No worries....glad to be of help. Let me know how you get on at your appointment.

All the best.

Kathy  x  smile