Deon's Story
Parkinson Disease (overview)
Parkinson’s disease is a slowly progressive neurological disorder caused by the degeneration of specific nerve cells in the brain.
These cells store the dopamine neurons of which a Parkinson’s sufferer has too little.
The cause has not been identified.
Both genetic and environmental factors have been implicated.
Parkinson’s is an individual condition. Not everyone has the same symptoms. The progression and medication are also dealt with individually.
It is important that medication be taken to effectively control the symptoms.
Levodopa is generally excepted as the most effective treatment for Parkinson’s.
Levodopa is deferred especially when a person is still young.
The Parkinson’s sufferer goes into an off phase when his medication is depleted.
There is a stiffness of the muscles, slow movements, tremors and a shuffle.
Long term effects of Levodopa is dyskinesia (involuntary movements).
Parkinson’s does not differentiate between age but mostly people above 60 gets it.
Only 5% of cases are inherited.
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Hi my name is Deon le Roux and I have now twice spoken to students at one of our local universities. The person that asked me, a lecturer in Psychology, her father has got PD.
When the students come to the section that deals with the neurology of the brain she gets a chance to show but I must tell.
That was when I decided to put it down on paper and this is my story about the fight with Parkinsons. .
I was diagnosed at age 34 in August 1983.I was sitting at my desk in the office adding up some figures on my calculator when I noticed that when I paused my right hand had a faint tremor. My GP treated me for stress for 2 weeks and then referred me to a neurosurgeon. The neurosurgeon Dr. Savvas Thomaides immediately recognized the symptoms and told me I had Parkinsons. He recognized the pill roll movement and I didn't swing my arms when I walked. I am an only child and nobody in my family has or had PD. Because I knew so little about PD, only old people got it and they died from it. It was like a death sentence to me and I did not think I was going to see 40. At this stage none of these wonderful drugs were available and we here in South Africa were 10 years behind the Western world.
My two eldest children were girls aged 4 (Melinda) and 6 (Lynette) at the time.
When we sat around the supper table I would pull a face (a side effect of the meds), my peas and rice would not stay on the fork (due to tremor) and my kids laughed. I let them have it and sometimes got so cross that I left the table in the middle of a meal. The kids did not know what was happening. I was angry, frustrated and depressed. Why me Lord?
After 3 to 6 months it got so bad that I could not write and had to teach myself to write left handed. I sometimes had to sit on my hand and press my leg against the leg of the desk. The impact on my job being a financial accountant was huge.
It was at that stage that I carefully planned and contemplated suicide by various means. I had a 9mm parabelum pistol , a Alfa Romeo and a friend who was a pharmacist.
To leave my loved ones as much as possible, with the least possible mess.
Depression was not related directly as a side effect of Parkinsons.
Only mad people saw psychiatrists. I had to work through this on my own .My family and friends had no idea. Only my mother suspected because my father was dying from cancer and I had to help her. I tried but could not always hide it. My dad passed away in June 1984.
The first year was very difficult because I battled to write and I was under medication that made me feel like a zombie.
It took myself and the neurosurgeon a while to sort out my meds
Luckily my superiors at work were very good to me and they kept me employed. I worked there for 18 years ,15 with PD.
Thank God I have a loving and supportive wife, Judy, 4 children and a job.
I then made a conscious decision to walk the narrow path, put my faith in God and trust Him in everything.
I really had to work hard at it, as this thing “PD” was coming between me and my family and I had to fight it.
I went for a MRI scan and while I was lying in the tunnel I felt there was a hair in my left eye bothering me but I could not do a thing, because I had to lie still. When they were finished I went to a mirror to remove the hair from my eye. I then saw that my eyes were swollen shut, I was allergic to iodine.
Then in 1987 I had a Pallidotomy on the left side of the brain. This was an experience on its own. My head was shaven and the only anesthetic they used was a bit of local at the spot where they were going the drill the hole. My head was placed in a steel ring and were held in place by 4 screws .The neurosurgeon Dr. Ronnie Plotkin then proceeded to drill the hole with the aid of a manually operated stainless steel drill. The noise in my head as they went through my skull was very very loud an amplified crunch crunch. He then placed a syringe connected to a container, containing liquid nitrogen into the hole and into my brain. The syringe was also attached to the steel ring.
With the first and second attempts I had a “needles and pins” sensation on my tongue and lips. This was a 3 hour operation and I was fully conscious. With the third attempt he got the right spot and froze it to -60 degrees Celsius. I now have a lesion on my brain approx.1x1x5mm.
He then asked me to hold out my hands and legs, the tremor was gone.
Dr. Savvas Thomaides attended the operation out of interest.
My arms and legs were sore for a week because of the tension.
After the operation I reverted back to writing with my right hand but now the writing was minute compared to my handwriting before the operation. People joke and say that the operation has improved my vision.. The neurosurgeon said my handwriting and speech will be affected, you cannot have your bread buttered on both sides.
I tell people that they must tell me if they do not understand or hear what I say.
This operation helped for approx 8 years and in the meantime my left side also started
Before the onset of the disease I was quite an active guy. Doing aerobics 3 times a week, weight lifting twice a week and then jogging 6 times a week mornings and evenings. I also played a bit of golf, but had to stop because my right leg got very tired.
I also played league snooker. My best story as far as the snooker goes was when I reached the club finals in 1987 about 3 months before the operation. My opponent was one of the club’s best players and he thought that I was going to be a push over. But to his and the crowds amazement I beat him. They could not believe that a person that shakes so much could even play snooker. Where there is a will there is a way, plus a bit of luck.
My birth date is 5th June 1949, thus I am a Gemini. The one being me and the other old Parkie. He tries his best to undermine me, so I must be sharp to try and sidestep whatever he has put in my way. I am still on the winning side.
As far as operations go I found it very useful to discuss the case of having PD and what anesthetist is going to administer, with the doctor and the anesthetist. The PD website came in very handy here explaining what to give, if a patient is on what medication.
I had my gall bladder removed in 1988 and a haemorrhoidectomy in 2004 and both went well. I put my faith in God that He will guide the surgeon through the operation.
A person suffering from PD must guard against constipation as this is a side effect of the meds.
Another side effect is insomnia. I try not to sleep at all during the day and if I cannot sleep I either watch TV, work on the PC (surfing the net) or read.
When I walked I had a bit of a limp and did not put my right foot down heel first but when the medicine kicked in I walked much better. It was like putting a light switch on the same applies when you go off.
My only complaint at this stage is the level of ignorance concerning the disease by all.
You must tell people that you suffer from PD and ask them for help or patience especially at till points. The taking out and putting back of money in your wallet.
Many people don’t know about PD and they judge too easily.
I had a few embarrassing moments when I wasn't stable on my feet and my speech was slurred One day I overheard a man tell his wife that some people start dinking early in the
morning. I confronted the man and told him what the problem was. On another occasion I went to the police station to report that my car has been stolen. The person behind the counter said he couldn't serve me as I was under the influence. I immediately went to the officer on duty and told him that they must educate their people to have some tact and get information first. In another instance when I went to put in petrol the pump attendant asked me if I haven't got something for him as I looked a bit under the weather.
I am lucky I haven't fallen yet just bumped into the wall and tables
In general most neurologists, doctors and nurses have heard of the illness but do not know what it’s about.
They do not realize the struggle 24/7 that we have as they only see us 30 minutes every 6 months.
A number of PD patients came to this conclusion after bad experiences in hospital. They did not get the right treatment and some of them were completely ignored. In some cases their PD medication was withheld for such a long period that they started showing withdrawal symptoms.
Thank God for the few that care, show interest in your situation and make this their field of study.
In a resent study over 5 years it was found that it is better in the long run to start medication immediately.
They also identified 18 symptoms that a person with PD could have which are non-motor functions ie Sleep disorder, constipation, swallowing etc. Tremor is a motor function.
I am another person compared to pre 2003 as the neurologist Dr. Sue Tager I am with now really shows interest. I used to have a nap in the morning and in the afternoon. I just went through the day, had no interest in anything. The neurologist Dr. Sue Tager made an adjustment to my meds and to my regime, it works much better now.
You must have an open relationship with your doctor where you can air your opinion without the worry that he/she will get upset or take exception. You must speak your mind because they are not with you 24/7 and give them all the facts. They must be interested in your case otherwise you will have to find someone else that is.
Some of them think they are God They give you a quick check-up, write a prescription and collect their fee. They also prescribe Sinemet too soon because they know it works and they don’t talk to other doctors.
You must get your mindset right and once you have achieved this you will notice what difference it makes to you as a person and to your outlook in general. This is hard, not so easy to achieve but you must keep at it.
A Pd sufferer must be started on the lowest dose and the mildest drug.
It is a disease that gets progressively worse thus the longer you can delay taking Sinemet the better.
I was taking Levodopa 2000mg per day .in November 2003and from December 2003 under a new Neurologist Dr. Sue Tager she brought it down to 1300mg per day.
Then something strange happened. I went to Pretoria on 27 July 2006 to take part in a drug trial for new medication that will help for Dyskinesia. I was disqualified to take part in the trials because I had a Pallidotomy .Two neurologists Dr. Smuts and van Rensburg looked at my medication and advised me that I should stop the Madopar and drink an extra Sinemet CR. I went to the pharmacy to get more Sinemet CR but they were out of stock. At home I had all these Madopar to get rid of. I decided that seeing I don’t have any Sinemet CR’s for the rest of the month I would have a ½ Madopar instead. This decision I took, could only have come from God because I am not a pharmacist. This happened on 14th August 2006
Since I have stopped the Sinemet CR My tremor is much less, my off periods are virtually nonexistent and my Dyskinesia is gone to a great degree. My speech has improved slightly and I walk perfectly. This is the best combo of my meds and I think it’s a miracle.
My Levodopa intake now is 600mg per day.
My neuro Dr. Sue Tager was amazed and could not believe it,
I see her every six months
I have not felt this good in 23 years
After all these years I am now on Sinemet 25/100, Comtan, Pexola 1mg, Madopar, Amanthadine/Symmetrel and Azilect/Rasagaline. I take my meds 6 times a day 06:00 till 23:00..Forteen tablets in total a day .The cost at this stage is approx. R3500pm. It is covered by my medical aid as chronic meds.
My regimen is as follows: 6 am 1 x Comtan ,1 x Symetrel 1 x 25/100 Sinemet and 1 x Azilect
8 am 1 x 1mg Pexola and ½ Madopar
12 noon 1 x Comtan 1 x 25/100 Sinemet and 1 x Symetrel
2 pm 1 x 1mg Pexola and ½ Madopar
6 pm 1x 1mg Pexola 1 x Symetrel and ½ Madopar
11pm 1 x Comtan and ½ Madopar
I belong to a PD support group and it is amazing to see the various ways PD effects people. Everyone is a case on his own and there is no standard medication.
You must avoid stressful situations. Eat properly and take your meds at the correct times.
When taking meds it must be 2 hours after you have eaten and 1 hour after taking your meds you can eat. Giving you a 3hour cycle.
Our support group gets together the second Tuesday of the month. At our meetings we try and have a speaker ie. a Neurologist, Doctor, Pharmacist, Psychiatrist or Dietician.
As far as PD sufferers go I was dumfounded when I only had 3 people contacting me after I placed ads in 4 local newspapers and sent out 150 flyers from a large pharmacy in our area and after contacting 25 churches of all denominations. Why are they staying in the closet, are they shy because they have PD or are they afraid of what they might see at the meeting. One of the best therapies is to talk to someone in a similar situation. There is so much to learn from one another.
Our national register show there are 12 000 names but according to observation there must be at least 100 000 more.
I am now distributing flyers through the doctors rooms and I had one new person come to our March 2007 gathering..
I have been getting a disability pension from April 1999 as my job became too stressful.
I still drive and do odd job’s which don’t require a lot of writing.
We have two of our 4 grandchildren to look after, a boy Daniil 11 and a girl Clarissa 7, who’s mother, my eldest daughter Lynette, died in a motorcycle accident in May 2004. My daughter and her husband Arthur left, for a venue about 400km from here, on a motorbike. I phoned them on Saturday morning round 08:30 and they said apart from the cold they rode well as they arrived there at 23:00.I got worried at about 15:00 and said to Daniil we should phone them. I tried three times but no answer. I said to Daniil we should try his mothers mobile and he replied its no use her battery is always flat. I said lets try in any case. The phone was answered by a man who immediately told me she died an half an hour ago. I was taken aback and did not want to believe him. I took his number and my wife phoned back and confirmed that it was true. She died instantly and her husband broke his back. He is in a wheelchair, paralysed from the waist down..
I would be lying if I said I did not experience problems. My self esteem is better when my meds work and I can act normal.
It occasionally happens that I move with the speed of a praying mantis or a chameleon.
When I shower in the mornings I sometimes find that washing my hair is a problem as I cannot get my hands to move in circles and when I brush my teeth the small movements is not so easy to do.
I had an experience as far as shock goes. From the day my daughter died I really battled to control my tremor. A week after the funeral my emotions were back to near normal and my meds took control of the tremor.
From what I have noticed at our support group meetings is that the caregivers don’t get any care. They look after the PD sufferer and have all the knowledge about the patient to tell the neurologist what’s happening. They also stand independent and can tell, if something works or not, as they are with the patient 24/7. Therefore I think that MD’s and Neurologists should direct some questions at them to get a better picture of the situation.
Apart from the PD I am healthy.
I go to gym 5 times a week and have in Oct 2007 donated my 196th unit of blood.
I have a lot to be thankful for. Leading a close to normal life, to raise my grandchildren and be of use in the community. My one son and my 85 year old mother are also living at home.
At the end of the day I am still the same person, dad, grandfather and friend although sometimes I might shake or be a bit slow.
Just remember that we haven't asked for this illness, it came our way.
Therefore you must trust in God and pray that he gives your doctor the guidance to assist you and you the strength to fight PD.
Feel free to contact me at finanserv@inx.co.za or DeonGem1@yahoo.com
My address is P.O Box 67
Krugersdorp
1740 South Africa