Started a list

I’m awaiting my next appointment with my Neurologist after having an MRi and some copper blood tests.

I have started the following list to discuss with him. Are these the kind of things I should be mentioning at my next appointment? I’m male 44

  1. Urgency to urinate. Have done for well over a decade if not longer. Always need to know where a toilet is.

  2. When I wake in a morning I feel like my chest and upper arms are shaking. They don’t appear to be but feel like they are internally. At first I thought it was a dream just before waking but now i think it is real. Also chin/jaw occasionally

  3. Bloodshot eyes. Had this several years. Few weeks ago they were very sore for the first time so had to see the optician. They said the glands that make the fluid that seals in the tears are blocked. I now wonder if this is because I might not need blinking enough. Wish I had asked.

  4. Migraines. Had since a child.

  5. Regular headaches when I wake up.

  6. I think I have developed a kind of stutter. Occasionally when talking I have to pause and look up to continue. Not very often and usually at work.

  7. I sometimes can’t find the word I’m looking for. Have to pause and then think of an alternative. Feel like I might have always done this but might be getting worse.

  8. This is a strange one and hard to describe but I want conversations to end. Whenever I’m talking to people inside I’m thinking please can this conversation end? I don’t think I have always been like this.

  9. After walking a lot (several miles) I can get weird cramps in my feet where my big toe goes one way and all the toes go the other. I forget which.

  10. I think I have shrunk. I swear I was 6 foot 4 my entire life and recently got measured at the hospital and I’m 2 inches smaller.

  11. Eye floaters

  12. Sometimes have lots of motivation and energy. Will get up early and cycle for hours. Some days despite being rested just can’t be bothered and get out of breath going up the stairs.

  13. Sense of smell. Sometimes I can’t smell things other people do. For example, a colleague eating fish in the office. Whole office complained and I couldn’t smell it.

  14. Sleeping. I’m often in pain through the night. Hips and lower back. Feel uncomfortable. Often wake up and have to roll over to relieve the pain. When I wake up in the morning I can’t lounge or sleep in as I’m too uncomfortable. I have to get up and move.

  15. Similar to number 14 my back sometimes takes a while to straighten out when getting out of bed or sitting on the couch.

  16. My right arm doesn’t swing when I walk but does a little if I’m carrying something.

Hello Boyzie, as far as I am concerned I take the view that if it’s an issue for you in some shape or form it is always worth mentioning. Parkinson’s is very complex and I think the better the quality of information ie as much detail as you can, the better placed your consultant or specialist nurse will be to advise you appropriately. They may not read it but it can be useful to send a copy of the above to your medical team ahead of your appointment and at least it will be on your record. I hope your appointment goes well.

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