Chapter 234 - Some Changes

Last week she saw the new neurologist for the 2nd time. He suggested she return to Madopar taking only 3 a day plus some quick release to provide help between times.Our chemist is to contact him on Monday because she says Madopar is unavailable in the dosage prescribed. Until that is sorted out she will remain on the following, which she typed, with comments, to give to the neurologist because I think to do so saves a lot of time & confusion during the appointment.

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MEDICATION AS AT 17TH AUGUST 2011

6am 1X 1mg Sifrol

1 X 40mg Deralin

1 ½ X 100/25 Sinemet

Medication kicks in around 7am.

If I get up no later than 8am I am able to shower easily and get dressed. If I leave it any later I need help

Medication usually lasts me until 8.30am when my legs start to ache and I need to sit down.

8am 1 X 200/50 Sinemet CR

9am 1 ½ X 100/25 Sinemet

Around 9.15-9.30 I have a piece of toast.

Medication kicks in around 9.30am

10am 1 X 40mg Deralin

Medication has worn off by 11.30am

12noon 1 X 1mg Sifrol

1 ½ X 100/25 Sinemet

Medication seems to kick in around 12.30pm but I am shaky.

Lunch is a bowl of soup and slice of bread around 12.30- 1pm.

I can move around but my legs are shaky until around 2.pm

2pm 1 X 40mg Deralin

2.30pm shakes stop & Medication seems to be working but only lasts for about another ½ hour.

3pm 1 ½ X 100/25 Sinemet

Medication kicks in about 3.30 pm

4pm 1 X 200/50 CR Sinemet

Medication lasts until around 5.30pm

6pm 1X 1mg Sifrol

1 ½ X 100/25 Sinemet

1 X 40mg Deralin

Medication kicks in around 6.30pm and Dinner is between 6.30 and 7pm.

Medication lasts until 8pm

9pm 1 ½ 100/25 Sinemet

Medication gives a bit of relief but does not kick in very well and it is difficult to get ready for bed around 10pm

I usually go to the toilet between 4 & 6 times between 11pm & 2am.

I sleep between 10pm and 2am but keep waking to empty my bladder but go straight back to sleep.

Midnight 1 ½ X 100/25 Sinemet

1 X 40 mg Deralin

1 X 200/50 CR Sinemet

Usually sleep from 2am until 4.30-5.00am when I wake to empty my bladder but don't get back to sleep as my legs are stiff & shaky and I have cramps in my calf muscles and ankles.

6am take tablets,

Sifrol, Sinemet 100/25 and Deralin. Usually doze off between 6am & 7am when I need to go to the toilet again.

If I get up no later than 8am I am able to shower easily and get dressed. If I leave it any later I need help

.This usually lasts me until 8.30am when my legs start to ache and I need to sit down.

TUESDAY 16^th August:

Needed my hair cut so I decided not to eat any lunch and just have a piece of toast around 1pm,

I had an appointment at 3pm. Was too shaky at 3pm so put it off until 4pm when I had no trouble.

WEDNESDAY 17^th August:

Had to go to a meeting from 2pm until 4pm so only had a piece of toast for lunch. Took Deralin at 2pm. Had no problems as I was sitting down even though my legs were feeling a bit stiff from about 2.30pm. Took my tablets—Sinemet 1 ½ X 100/25 at 3pm and had no problems getting up and walking out of the meeting at 4pm.

We then went shopping until 5pm. Arrived home at 5.30pm and needed to sit down until after tea.

I have a book which deals with protein intake being delayed during the day time and catching up at night. I don't feel that it is only protein that stops the medication from working, it is just food of any sort.

We occasionally meet people and go out for lunch and I only order roast vegetables and gravy and I have problems with the medication not kicking in until after the 6pm dose. On these days we don't have an evening meal-just a piece of toast or a sweet and my 6.00pm medication works well and even the 9pm dose works.

I have made an appointment with a dietician in [town] on Saturday to see if she has any answers.

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She continues to intolerant of enclosed spaces, often saying she is OK while we are out but has more tremors once we arrive back home. She finds entering our bedroom to go to bed bothers her as well. However, when I sugessted I move my bed to another room she protested that she did not wish to sleep in a room on her own. I have found that she is bothered should I go to bed early to read because, she says, "You are likely to go to sleep reading and not hear me when I need you." So this morning I re-arranged the bedroom to make a larger space in the middle of the room and easier access by taking the chest of draweres and the cheval mirror into the "living" area. We will see. From time to time she wants to use the special foam mattress that we bought several years ago, but I'm in no haste to retrieve it from the ceiling because I suspect she will feel she will be trapped in a "hole" in the mattress in a short time.

At long last she has begun stitching Christmas Carol (Dickens) designs on a plain white table cloth, a task she has post-poned for some 8 years. This is a family heirloom-to-be. She has also stitched some red work designs I did for her onto some aprons to be used at a friend's party.

This afternoon we saw the movie "Red Dog". Her 3 PM meds should have been taken part way through the movie but she was afraid of dropping them in the dark so delayed until we came out.

Chapter 233 - Developments That Bother Me

On Sunday a week ago she handed me her very thick PD book "The Parkinson's Disease Treatment Book" by Ahlskog to read Chapter 17, "Movement Problems That Develop Later" as I was going to bed about 11PM. I did so, marking sentences & paragraphs as I went, then had to read a novel until 2AM to unwind my head. On Monday morning I suggested she take her 6AM Sinemet & Sifrol E, skip the 9AM dose of Sinemet but take the 9AM dose of Sinemet CR . I time charted the effects on her, perhaps a little cruel, but after reading that chapter I needed to see the impact of changing her dosages. By 3PM she was back taking her regular dosages. Between 6AM & noon she had three "feelings of release" each preceded by a brief period of dystonia/dyskinesia/tremor/shakes (experts may choose the appropriate word) with intense discomfort.

I was able to determine that kick-in for the 6AM Sinemet was 30 minutes, at 1PM 50 minutes, at 3PM 80 minutes, at 6PM 60 minutes. On re-reading Ahlskog's comments about food intake I realised that, in my own words, she should not take PD meds within 2 hours of COMPLETING a meal and she should not eat within AT LEAST 30 minutes of taking PD meds. Well, I think that is what he says. So, look at this example, she takes PD meds every 3 hours during the day because longer between doses of Sinemet is uncomfortable for her. She has a dose at 6PM, thus cannot have an evening meal before 6:30PM which then needs to be completed by 7PM so that she can take 9PM meds 2 hours later. Similar problem at lunch time. Of course, the impact of food depends a lot on the amount of protein in it. To my mind this timing explains so much of her problems. Also, Ahlskog suggests that slow release Sinemet (when he wrote he must have been unaware of Sifrol & Sifrol E) is unreliable & erratic because of the "stickiness" of the pill, how readily it remains in the stomach for a period of time even though the stomach empties into the small intestine after food processing in the stomach (if I understand his comments correctly).

Following the experiment mentioned above, she decided to gradually change her meds regime to:
0600 1+1/2 Sinemet, 1 Sifrol, 1 Deralin
0800 1 sinemet CR
0900 1+1/2 Sinemet
1000 1 Deralin
1200 1+1/2 Sinemet 1 Sifrol
1400 1 Deralin
1500 1+1/2 Sinemet
1600 1 Sinemet CR
1800 1+1/2 Sinemet ! Sifrol, 1 Deralin
2100 1 Sinemet
2400 1/2 Sinemet, 1 Sinemet CR

Last Wednesday we drove to Coota to meet with our friends, from further south west, at the local RSL club. None of us had been there before. The day was brightly sunny for a change, the drive uneventful, even though once we left the 4 lane the country road was narrow & twisting. After an enjoyable lunch & lots of talking we drove home the way we came (I had contemplated taking a slightly longer better road) to arrive home at dusk. She didn't go to the loo between leaving at 9AM & arriving home at 5PM; whereas I went twice. Going for so long while with a UTI is not good for her. Our friend has lost weight so that his face is gaunt; he continues being positive about his problems.

Since discontinuing Vitamin C after 6PM & taking the single Vitamin E early she usually does not go to the toilet after midnight, sometimes once. However, on several nights she has gone about every 15 minutes around 11PM.

Saturday morning I rose early, washed her commode basin & then after her first void around 6AM I tested for UTI. I was surprised that the nitrite tab turned bright pink almost immediately whereas the leukocyte tab only changed colour slightly. I also noticed that the protein tab had also turned to a darker green, indicating at least a trace of protein. She had returned to sleep after her 6Am meds & around 0845 I went to her because I heard her talking & snorting loudly in her sleep. At 0845 she woke, rose and then as she came into the living area she complained of the noise from the fleuro pedestal lamp (I had left it on after photographing the UTI stick). I was unable to hear a noise from the lamp. She was slightly glassy eyed, Then she complained of a slight ache at the back of her head as I turned the lamp off. She continued to hear the noise in both ears. She was able to move OK, I had her poke out her tongue, it was straight, a stroke test I was told. Her headache gradually faded away. The noise in her ears continued. Yesterday, Sunday, I again did a UTI test, the indications were the same.

Did I mention that she completed a wall hanging with a Japanese theme & now she is putting the finishing touches to a quilt? I marvel at her ability to use the upper half of her body yet the bottom half is so troublesome. Although in saying that, she is living with more than is obvious to the casual observer. A few nights ago we were laying in each others arms; she had gone to sleep, her left arm cradling my head. Every so often her left arm would tense and flinch, then tighten on the back of my neck; enough to be uncomfortable for me. I wondered how I would feel using her body for a short time; I suspect I would not enjoy the experience.

This morning I made an appointment for her to see the Sub Continent doctor; our usual doctor is booked solid.