Parkinson's Movement
12,965 members11,545 posts

New to this

Never really heard about this other than Michael J Fox has it. You would see him on tv and see the changes and say wow. When it effects a loved one. You are like what do I do? Where do I start? My mom who just got diagnosed with it. I wonder if I should have seen a sign? She is so different now, it's difficult to handle. Can't concentrate, not walking, hardly talking. I hope that being a part of this group can help me.

6 Replies
oldestnewest

Deniseb57,

First, don't feel bad for not seeing it, most of us that have it, didn't see it either.

Research and learn as much as you can. Here are some important things.

o Everyone with PD is different - symptoms, supplements, meds and exercise routines. Sometimes you just have to experiment to find the right mix.

o Go with your mom to her appointments. Ask questions. Write questions & concerns down and keep notes. Ask questions on this site also and read posts. Just remember, people on this site are not doctors, but sometimes the patients can help you more. Just use your best judgement.

o Have her get plenty of exercise. Sitting is not good, keep her moving as much as possible. Vigorous exercise is the best medicine. This site will give you several ways to get exercise.

o Good nutrition is important.

o Sounds like she may be depressed about her diagnosis. Talk to her doctor.

o Tell her life is not over with a diagnosis of PD. You just have to work a little harder. To get better, you have to Accept it and take Action.

11 likes
Reply

I have had this Monkey on my back 13 years. Only now is it creeping into a difficult situation. Rely totally on Madopar. Am trialling an injection weekly called BYDURION....Byetta......my Neurologist is keen for me to ‘try’ anything I feel will help.....he’s open to suggestions. Many are not....another Parkinson friend also on a trial with a daily injection of something which is prescribed for Obesity.....big word....has lots of ‘L’ in it. She’s back driving, losing weight and generally feeling good. Was a mess.

I don’t feel as well as she but it’s only been 3 months. Excessive sweating is debilitating and when I use some exertion become soaking wet making all symptoms worse. My meds intake has dropped.....during daylight hours so now I take more through the night. ( maybe 1 ) at 2/3/4 am whenever I wake. Bedtime was/is fraught with the unknown. I feel trapped and if I don’t have a cushion between legs will have Dystonia in my feet once I leave the bed.....getting to the toilet then dangerous.

Once meds kick in particularly the first for the day I feel like King Kong but then can deteriorate as I start to put food in my tummy. Am trying hard to avoid Milk and dairy. Love milk. Red meat I can avoid and seafood too.

It’s past midnight and I’m still upright but have Dyskenesia from previous dose. This will pass and I will try to get to bed now and I do hope I can stay till 5am.

I could go on and on and on as there’s much more to my story.

I won’t give up ever. I do have walking sticks and a walking frame for those dizzy moments which still plague me daily.

I live in Queensland Australia

Over and out

HGE

Reply

Great that you are on bydurian. The recent research results were very positive, but you are the first person I know of who is trying it.

Please let us know how you are getting on.

Ps are you also diabetic?

Reply

Sorry reply below

Reply

No. The worry is I’m losing weight. Appetite suppressed.

I force myself to eat food which previously I loved. It’s early days,. I’m being monitored. See my GP every 4 weeks. Very hopeful. Just wish I could sleep longer. As previously stated my Neurologist willing to trial this drug at my cost though. He/we had heard of trials overseas and it is readily available where I live.

HGE.

Reply

Maybe I can help you. Read my profile and contact me, it will cost you nothing.

1 like
Reply

You may also like...