Parkinson's and a story that has changed my life

Reason for this blog

The reason for this blog is to share our story of how a Parkinson's Disease sufferer’s life has changed since changing the way she takes her medication.

Carol’s story

18 months ago my nightmare started on the plane coming back to South Africa from England. I had awful cramps and rigidity in my muscles. My life with Parkinson’s for the last 17 years has now become worse. I was in constant pain, I couldn’t sleep for longer than 2 hours and I was losing weight. I decided to make an appointment with my neurologist and explained all the problems I was having. He prescribed Stalevo for me but unfortunately that did not help and after 8 months and a lot of involuntary movement I decided something had to change.

I decided to go to a Parkinson’s support group meeting in the hope that I could get some advice from others who are going through same problems. I met a man there named Neil, who advised me that Stalevo was far too strong, so I went back to my neurologist and asked him to change my medication. He changed this to Carbilev that helped for a short time but I was still in pain and still could not sleep. I wasn’t getting any quantity of life, so I went back to my doctor and he suggested that I should consider DBS (deep brain stimulation) and also that I should go to see Professor Carr in Cape Town to assess me and give a second opinion.

To be honest I didn’t want to go, as the thought of DBS scared me but my husband Graham and my 2 sons convinced me to go, as there was nothing to lose. We met Professor Carr in Cape Town and he told us about taking my medication in liquid form which Graham will explain below. This was my first step in regaining my independence and my life back.

All the pain that I used to suffer has now gone and I just have a little discomfort at times, which is a massive relief. I have a lot of my independence back now and have started doing a lot of the housework again which is something I have missed!

I also love cooking which I am now able to do and have cooked some amazing chocolate cakes. My son came over from England to visit a few weeks ago and we went for a lovely 40 minute walk to the shops, which was great as I haven’t been able to do that for many years.

I am able to be out of the house a lot more and am now able to visit friends and go shopping as I have more ‘on time’ during the day.  I have also started reading again, which is just another example of how my life has improved.

I hope that by sharing my story, it will help others who are in the same situation as me and that they will benefit as much as I have done.

Graham explains in more detail

My name is Graham.  I am 67 years old and my wife Carol, who has Parkinson's Disease (PD) is 62 and was diagnosed 17 years ago. About 3 months ago she reached the point where she couldn’t take any more of the pain and involuntary movement.

She was taking 1½ Carbilev 25/100 every 3 hours, all day and night. Her ‘on time’ was around 1 hour, with a lot of involuntary movements due to all the medication she had taken over the years. There would be 2 hours ‘off time’ (spent in bed, with her body in so much pain she could not even lift the sheets off herself or turn over without help). Even swallowing her tablets was a problem as she felt that the tablets were lodged in her throat.

We decided to go and see our neurologist as Carol could not continue with her current medication because of the side effects, despite having tried other drugs such as Sinemet and Stalevo. We were really desperate and the only solution we could think of was Deep Brain Stimulation (DBS), which we had researched on the internet and seemed to be our only hope.

Our neurologist said he wanted a second opinion on Carol’s medication and her suitability for DBS, so we went to Cape Town to meet a professor in neurology and movement disorder.

He asked lots of questions and suggested a change in the way she took the medication before considering DBS, which was a surprise to us. He recommended we try Carbilev in a liquid form; this is a mixture of carbilev, vitamin C tablet and water. He told us that in some patients, although very few, this worked extremely well and allows the patient to continue in an appropriate therapeutic window avoiding both dyskinesia and off periods.

After a long discussion, we all agreed that we would try this and manage it ourselves back home in Port Elizabeth. Instead of Carol taking 1½ Carbilev once every 3 hours, we would take the same amount of pills but in a mixture form spread over the 3 hours taking every hour. This meant she wound not have all the Levodopa (the main cause of involuntary movement) in one shot but in a steady flow, which would help with the dyskinesias. It would also mean that Carol would not have to swallow tablets any more but simply drink the medication.

The mixture formula is 1 Carbilev to 100 ml of water. Plus 1 vitamin C tablet to 4 Carbilev. Although he pointed out it would be up to us to work out the exact times and amounts that worked best. The reason for adding the vitamin C tablet is to speed up the effectiveness of the liquid.

How we started

As Carol was taking 1½ Carbilev every 3 hours (12 pills per day), we decided to make 400 ml of mixture in a drinks shaker:

·         400 ml water

·         4 Carbilev

·         1 vitamin C tablet

We added the 4 x Carbilev and 1 x vitamin C tablets to the water, left for a few minutes, stirred and then shook.

We bought a 60 ml syringe and used this to draw off 3 x 50 ml of mixture and putting these amounts into small bottles which Carol drank every hour. This is equivalent to ½ Carbilev per bottle and was taken every hour.

After 3 hours Carol would have taken 1½ Carbilev, giving her a steady flow of Levodopa (the main cause of involuntary movement) over the 3 hours and not all at once. As the Carbilev does not mix well with the water, we only draw off 3 bottles at a time and then give it another shake. Carol also shakes the bottles before drinking them.

We experimented with times of when Carol took the mixture and the amounts but not the mixture formula itself. After a few weeks of experiments we reached our goal, which was to give Carol more quality time during the day by allowing Carol to continue in an appropriate therapeutic window avoiding both Dyskinesias and off periods.

Carol’s current medication

6.00 am                   65 ml mixture

7.00 am                   40 ml mixture

8.00 am                   40 ml mixture

(6:00 am to 8:00am is the build up due to not taking any medication during the night)

9.00 am – 7.00 pm 35 ml mixture (on the hour)

8.00 pm                   40 ml mixture

9.00 pm                   40 ml mixture

Carol also takes Pexola 0.375 mg 3 times a day at 7.30 am, 1.30 pm,
7.30 pm and tripiline 25 mg at 8.50 pm. She has been taking these medications for many years.

Carol goes to bed at 9.15 pm and sleeps until around 11.15 pm and I have to help her sit up and take a sleeping pill, which was the professor’s suggestion.  She then sleeps until around 5.15 am and is now able to get out of bed on her own, walk around and clean her teeth, all of which she could not do before. We think this is because of the rest and maybe a build up of Dopamine. She starts her day at 6.00 am.

Carol’s medication changes

Pre-change of medication

1½ Carbilev every 3 hours all day = 12 Carbilev per day.
Total of 4,368 Carbilev per year.

Post-change of mediation

610 ml round off to 700 ml per day = 7 Carbilev per day.
Total of 2,548 Carbilev per year.

Conclusion

We have a huge saving of 1,820 Carbilev per year with far better results. Most of the saving came from taking the sleeping pill, helping Carol to have 6 or 7 hours sleep a night.

Carol’s diet (a big challenge)

We found that if Carol ate too much food, the mixture did not work, so Carol now eats half an hour after drinking the mixture:

7.30 am                   Fruit and 60 ml oats

9.30 am                   1 slice of toast with butter

11.30 am                 1 bar of chocolate

1.30 pm                   Small fruit salad or green salad

3.30 pm                   Small baked potato with 2 slices of tomato

5.30 pm                   1 slice of toast with butter and jam

At 6.00 pm, Carol starts getting ready for bed and at 7.00 pm, we cook our main meal.

7.30 pm                   Main meal (not too much protein)

9.15 pm                   Carol goes to bed

Food plays a big part in the success of the mixture.

How is Carol today?

Carol is 80% better than she was before we changed the way she takes her medication. She sleeps through the night without pain and is ‘on’ for most of the day. As long as we have the mixture with us, we can do anything, apart from going out for a meal as the mixture does not work as well then due to the intake of protein.