Has my future changed?


#1

Hello
At the age of 50 I have just been given a provisional diagnosis of PD. I saw the specialist in November and he said that it was likely but would not confirm until he saw me again, this will be in April. My symptoms are fairly mild but changing all the time and I don’t know who to talk to. I can’t write anymore, my voice changes and I stumble over my words, amongst other, these I can cope with, but the one thing that really gets me down is the tingling in my right leg. It’s only there when I sit down, not when I walk. I have trouble pivoting my foot up and my thigh feels heavy. Any ideas?


#2

Hi Bexby
Not sure I can help a lot, other than say I know almost exactly how you feel. I am 53 and was diagnosed a couple of weeks ago. Its daunting, and frightening. I am taking it a day at a time and trying not to think too much about the future, no one has a crystal ball…!
I have reducing function in my R hand as well as non motor issues with anxiety/depression and mood changes as well as trouble with concentration and writing.
Hang in there
Rich


#3

Hello Bexby
I think the doctor wants to see if or how you have changed between visits. Keep a diary to give doctor a clear picture of your symptoms.

You did not mention a start on medicine. I have had Parkies since my 50’s. Was diagnosed at 59. The meds help relieve symptoms usually considerably for most. It might take some time to get it regulated. (dose and timing)
The feeling about your future I think we all felt the same at some point. Part of feeling better with any disease is having a constitution which focuses on what you can do. Working on maintaining what you got. And do go on with plans you had wanted to do.

PD is not the end. It will be adapting. One day at a time.


#4

Thank you, although a local neurologist has said he is sure, in September, I’m still waiting for the specialist to confirm so have had a while to get used to the idea, but feel very alone as my husband is still hoping for a different outcome.


#5

Thank you.
Because my symptoms are relatively mild he is not putting me on any meds yet, as you say, he wants to see how I do inbetween visits but it is make me hyper aware of how my body feels. I hope that when I do start on some meds it will help with my leg as this is what gets me down.
I’ve read that there are side effects when you first start, is this true?


#6

At my age 59 I was started on plan old sinemet. But no matter what medicine you will be started on the dose will probably be very low. Spread out three times a day. I am no doctor and from others it seems a standard introduction to the meds. In my case my disease was diagnosed passed the mild symptoms. I was started at 100/25 sinemet every 6 hours total 300 ml in a day. I now 64 take a total of 900ml total a day 5 years from diagnosis.
The side effects are less likely to happen when titration is a slow process. If one drug effects you negatively there are more to try. It will get better. One day at a time. Tom


#7

Thank you Tom. I feel like I face quite a journey, but as you say, one day at a time. It feels better to finally have people to talk to who understand.


#8

Hi
Sorry to hear you are feeling alone. PD affects more than just us with the diagnosis, and it can be hard on those nearest to comprehend that there is, or may be, a new ‘normal’ to deal with.
R


#9

Thank you Rich. I think he is still hoping they’ve got it wrong. I suppose I just have to wait for him to adjust to the new normal. B