Chapter 328 - Trying Hard in Changing Times

Her LSVT BIG programme at Neurospace has now finished after 16 exercise sessions during the last 4 weeks. She thinks it has been a failure yet I have seen benefit from it. So much will depend on our persisting with the programme at home; for instance, she went through all the exercises yesterday at about 11.30am as best as I have seen her perform them; the first day we have used the official LSVT BIG DVD, which arrived from Amazon on Friday, as guidance. But today she needed to sleep from 10.30am for 2 hours so BIG was not attempted until about 1pm and bradykinesia limited her movements; she became distressed so only about half the exercises were completed. We will need to choose definite ON times for this. Some exercises she needs a chair to assist seating and I mounted a thick dowel, across the 1.8 metre doorway into the back room where she does the exercise, to act as a balance bar as she used parallel bars at the Neurospace gym. Next Tuesday she returns to Neurospace for an assessment.

After the Apo had been increased to 7.5ml on 24th January, the outer side of her lower left leg became inflamed and itchy Although she only rubbed it with a damp cloth, she made the skin worse. After some days of various creams the itch and redness disappeared. I was quite concerned with bruising and redness around several of the infusion sites. I had been keeping the left over 0.5ml Apo from 4x 2ml ampules in a smaller syringe to make up 7.5ml. Each time the small syringe was emptied I rinsed in in saline, yet wondered whether this was a contamination source. So for a number of days I tipped the unused Apo down the sink. There were no more bruised infusion sites. Then on 3rd February the Apo was increased to 8ml so there was none left over. Back on 31st January I made the infusion points above her belly button to give the lower area a rest after some 4 months.

A short time ago she felt ON enough to complete today's BIG exercises which she did, stumbling once as her left leg gave way as she was about to sit and rest. About a week ago she said her right leg was beginning to behave the same way but when I queried this today she thinks the right leg no longer experiences the same symptoms.

Earlier today she wrote the major points of her typical day, although she fails to mention pain and stress. I will encourage her to record a complete day complete with warts on a laptop at the next uninterrupted day.

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My day

11pm-4am

Asleep but able to get to the toilet unaided, also able to move around in bed. Usually 2-3 toilet visits

2am approx if awake take Sinemet

4am-6am

Unable to move but awake and have trouble getting to the toilet.

6am meds

Kick in around 7.30am then able to move but with effort.

7.30-9am

Change the pump syringe about 8am after a shower

Can move readily but slower from 9-00am -10 am

10am meds

Out of action until 10.30-11am

11am-1pm

Good but then slows down to 2pm when I take meds again which kicks in around 3pm,

3pm-5pm good – can move readily

5-6pm

very slow and often need help

6pm meds

6-8pm have dinner and can move around readily until

8-8.30 when I get ready for bed,

Can't do much until 10pm during which time I often need help to go to the toilet -usually 1 or 2 times until around 11pm when I go to sleep and so a new day starts.

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We now intend to go supermarket shopping at 4.30pm.