New to this site
 

I'd like to post a new thread, but can't find option to do that.
Would like to talk about my situation. Perhaps I don't have the necessary permissions yet.
I'm living with Parkinson's disease. It worsened considerably after I moved home, to what I thought would be more suitable accommodation. I'm not settled here however. I've been very disturbed by workmen at my windows at unpredictable times.
I live alone.
I went on Madopar, but found side effects intolerable when I tried to increase one of the doses beyond 12.5 / 50 : delirium, nightmares and ridiculously bad insomnia. I've been kept hanging on awaiting a neurologist appointment, which is tomorrow.
Meanwhile my father is ill, friends have been in hospital, I've had to give up driving. My parents live 25 miles away.My walking is slow, and i use a stick. I feel as if I'm on a moving boat much of the time. A friend who was helping me with lifts, had a slight accident the other day when I was with him : he seemed to just lose concentration, and there should be a question mark over his fitness to drive.
I'm anxious about many things, and very depressed.
I have to do my shopping online, and was recently let down by the supermarket in question, when they failed to deliver any of my ready meals. Luckily friends helped out, getting the food for me.
Another friend (so called) said she thought the symptoms i described were all in my imagination. Very hurtful. She's been unwell after reconstructive surgery, but even so, what a cruel thing to say.
Yoga has been a good thing. Some people have been kind and helpful too.
I've lost 2 stones in weight, and i need new clothes, which is not proving easy, without transport, and with the Parkinson's thing of finding it difficult to manage bags, stick, purse etc.
I also developed a number of infections (probably due to the Madopar) which made symptoms worse.
I just need to share this stuff. My life has changed almost beyond recognition.
Thank you for reading and for caring.

Welcome Claire W
I moved your post to it's own thread for you :)
You start a new thread the same way as you did to reply on that other thread. Here's a thread on new member forum that may be helpful.
https://www.neurotalk.org/new-member...community.html

Are you on any meds now? For PD or anything else?
Does the UK have any Meals on Wheels type programs?
For those that need meals delivered , free or pay what you can.
Look for local disability assistance dept, city, county or churches that may help you find resources to help?

Hi Claire

Welcome to NeuroTalk; I hope that you will find the community as knowledgeable and supportive as I have :).

The PD forum is very active. I trust that the information in it will be helpful for you.

All the best.

New to this site
 

Thanks. I found new thread button and posted again, before I found your reply.

On Madopar and Nortriptyline (just started) for depression. Meals on wheels exist, but my Madopar regime is very strict re timing of meds and food. Also I need to be available for medical or other appointments. I think meals on wheels can be delivered any time between 11.30 and 1 pm.

When med/s are not working, or start to have too many side effects, contact your dr office and let them know right away. They may get you in quicker or possible change or adjust your meds over the phone.

Is Madopar the first PD med you've tried?

Some put the delivered meals in refrigerator and heat & eat later.

Reply
 

I've seen neurologist, who told me to stay on Madopar, as it's probably preventing some symptoms, and is adding in Ropinirole, preceded by 3 days of Domperidone.
Not started them yet, as I'm still getting used to Nortriptyline, an antidepressant which is supposed to have some benefit with PD. Also I've got another UTI, so will be back on antibiotics.
Good point, could refrigerate meals. But would still be unable to go to appointments if waiting in for food delivery.

Welcome Claire W. The meds will take some time to get used to. You may never be able to tolerate some of the agonists. Don't be afraid to tell your doctor that you cannot tolerate an agonist. You will, however, have to get used to the carbidopa/levodopa. Nice to meet you.

Claire,

Welcome to the forum.

Getting the anti-Parkinson's drugs right is difficult and requires a lot of trial and error. This is made harder if you can only see your doctors infrequently. But, once you get the drug regimen right you have a good chance of having a good quality of life for many years.

John