‘When the doctor told me it was like time stood still’
Claudia Calleja takes a glimpse into what it’s like to live with Parkinson’s disease.
Parkinson’s sufferer Paul Wallace. Photo: Darrin Zammit Lupi
Paul Wallace was sitting at his computer when the curser started repeatedly blinking on the screen and, when he looked at the mouse, he saw his thumb move uncontrollably.
He did not think much of it and when his shoulder started aching he thought it was a trapped nerve.
Later that year, 2008, he was sipping coffee when his right hand started shaking. He decided to have it checked and his doctor referred him to a neurologist.
“He told me I had the initial stages of Parkinson’s disease. It was a shock. It was like time stood still. I left, sat in my car in the car park and said: ‘My God’,” Mr Wallace recounted.
He then went to a friend’s house and broke down.
A part of him was relieved he could now explain the depression he had fallen into some time earlier.
After his diagnosis, he tried to lead as normal a life as possible with the help of medication, going to work and exercising to keep fit and active. But, as time passed, his condition got worse.
His walking became tired and heavy. “Everything is a struggle. You slow down, lose your self confidence. You use twice as much energy as an able-bodied person. If I pick up a mug, it’s twice as heavy. A day feels like two days,” the 62-year-old said.
“I’m on 37 tablets a day at the moment, including morphine… But you have to keep doing things and can’t just sit and worry,” he said.
Mr Wallace, a former English lecturer, retired three years ago and moved to Malta in January 2011. He had been here several times before because his mother was Maltese and he has family on the island.
Living in Malta made him realise that people here seem to be “afraid of the stigma attached to non-perfection”.
“There aren’t many other people with crutches… I worry that they’re hidden away somewhere. I think they’re ashamed that they’re not perfect,” he said.
Mr Wallace tries to make sure he does not cut himself off and goes out on “good days”.
“Getting ready in the morning takes two hours. I have to take a tablet before I get out of bed. Then I take a load of drugs, brush my teeth and shave while sitting down. I have a shower, sit down, get dressed and, very often, after I come in here (the living room) after two and a half hours of doing this mundane every day thing, I fall asleep.
“You’re in a lot of pain most of the time because of the rigidity in the joints. It’s like wearing what the knights wore in the 14th century. It feels like everything is heavy.”
He has had to adjust his life by using strategies. He keeps a chair just behind the front door because he knows he will be exhausted on returning home.
Parkinson’s disease
Parkinson’s disease is a progressive neurological condition that occurs when a large percentage of the substance called dopamine, contained in cells in the part of the brain, is lost. This chemical is responsible to control movements and, therefore, a reduction of this chemical will cause problems in movement, the president of the Malta Parkinson’s Disease Association, Veronica Clark, said.
The main symptoms of Parkinson’s are rigidity, slowness of movement and tremor. As well as affecting movement, people with Parkinson’s can find that other issues, such as tiredness, pain and depression, can have an impact on their day-to-day lives. Many of the symptoms can be controlled over the years by using a combination of drugs, therapies and, occasionally, surgery.
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Paul Borg-Wallace
Sep 25th 2012, 13:49
I appreciate all the messages of support and comments that have been written. During the interview I did say that I was a member of the Malta Parkinson's Association which has made a huge difference to my life in Malta. I know that the group is so supportive and I was sorry that there were not more Parkinson sufferers attending the meetings. When life is so difficult and you are feeling low, it is good to know that there are people out there that can help and give each other support, even if it's only to share a Kinnie or Cisk :) It's talking with others that is the most important thing. If you have Parkinson's and not a member, please think about becoming one; at least try it.
Yes, there are days when I can't go out, either because I feel terrible, shaking too much and the pain is unbearable, or I just don't have the the confidence. When I am feeling like this, I know I am not the only one and I can always phone someone from the Parkinson's group to talk to.
The best thing I ever did was to make the move to Malta. The people are so caring and unique; this has made me feel so much better and has helped me through tough situations. I am proud my mother was Maltese and the Maltese people should be proud of their heritage and that they live in one of the best countries in the world with a fantastic Health Service for which I am eteranlly grateful.
Thank you Malta
Roberta Chetcuti Galea
Sep 25th 2012, 11:50
The Malta Parkinson's Association (MPDA) holds monthly meetings (usually 2nd Saturday of the month) at the Catholic Institute in Floriana. The next meeting is being held on Saturday 13th October at 10 am. Non members are welcome to attend and join the association on the day.
For further information about our association, Parkinson's Disease and support services, you are welcome to visit our website or our FB page. You can also e-mail us at [email protected].
Carmel Sammut
Sep 24th 2012, 20:01
Thanks Mr Wallace for your story. i was diagnosed with the disease over 8; years ago at he age of 55. I am now 63 years old. As you said it is a heavy burden and has so many effects - difficulty to put on clothes, to have a shower, to walk, to talk, to type, to write, to roll or change position in bed etc. etc.
However, as you said I try to keep living as near normal as possible, thanks also to members of my family and friends.
So please remember there are others like you. Wish you luck and take care!
NB: I hope you are enrolled in the the Malta Parkinson's Disease Association - it helps us a lot even psychologically - there are people out there who help us on a voluintary basis. The annual fee is low and we meet approximately once a month.
Seamus Riolo
Sep 24th 2012, 16:05
I wish you good luck and a happy life, and you are a person that should be admired for still keeping yourself strong from such a bad disease.
To anyone who suffers this disease, a simple change in diet can improve the effects of this disease dramatically...
Putting your body in ketosis can help alot , as studies have shown that a ketogenic diet can provide symptomatic and disease-modifying activity in a broad range of neurodegenerative disorders including Alzheimer’s disease and Parkinson’s disease, (a diet were carbohydrates are reduced to about 20grams a day and your body addepts to use ketones and fats as fuel instead of glucose(sugar))Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2367001/
If that is too much difficult, the person can just cut grains(pasta,bread,rice etc) and sugary food at least out of the diet, and eat meats(most important),veggies, controlled amount of fruit,milk and potatoes, and nuts.
Eating organic also helps if affordable. This won't be as good as switching your body to ketosis, but it's a big step since your cutting out the most damaging food group: grains. :)
Paul Borg-Wallace
Sep 26th 2012, 10:49
Thank you Seamus for this very important information. I have been studying it all night !!! It seems to reveal some very import facts whcih would be priceless and life-changing if they work. Thank you and I will continue to read more of your suggestions
Kevin Marks
Sep 24th 2012, 15:56
Living in Malta made him realise that people here seem to be “afraid of the stigma attached to non-perfection”.
“There aren’t many other people with crutches… I worry that they’re hidden away somewhere. I think they’re ashamed that they’re not perfect,” he said.........This is were i strongly disagree
I have a close relative who suffered from severe Parkinsons since the age of 46 for over 22 yrs now and he really tried to live a normal life and whatever and wherever help was in need he got it no matter .
Only last year he went for the Deep Brain Simulation operation by Mr Zrinzo ( god bless him) and he is far better now taking just a small portion of the pills he used to take.
Wish you all the best Mr Wallace we know its hard but there s always that little light at the end. We were really surprised with the improvement that DBS can make.
manuel Attard
Sep 24th 2012, 15:11
i admire and appreciate your strenght and courage.and your life makes me realise on how much sometimes we moan for nothing while we don't appreciate our good health.
may God bless you and grant you the strenght to carry on living with a smile on your face,
keep the faith and may a cure be found to help you.
thanks.
carmel muscat
Sep 24th 2012, 14:39
wish you a fully recovery
Amante Reale
Sep 24th 2012, 15:39
You understand that there's no cure for parkinson's, right?
Alex Buds
Sep 24th 2012, 15:43
No cure at the moment unfortunately. All that current medicine can do is alleviate a bit of the symptoms. If you wish to donate towards research to find a cure, I recommend the Michael J Fox foundation.
Paul Borg-Wallace
Sep 26th 2012, 21:17
Carmel, thank you for wishing me a full recovery.
Amante Reale , thank you for the "reality check" it was kind of you to remind me and the others that things can only get worse !!! There may be no cure but that is not a reason to give up. When one door closes another one opens.
Ray Pisani
Sep 24th 2012, 12:36
Mr Wallace thanks for sharing your suffering with us.
It helps us to try and understand people with the same disease.
Ray Pisani
Paul Borg-Wallace
Sep 26th 2012, 21:00
I did the article not for sympathy but to get Parkinson sufferers in Malta to join a support group like the Malta Parkinson Association. There are 400 cases of the condition diagnosed in Malta/Gozo every year; where are all these people and are they getting the help and support that they might need? I hope I have reached a few more.
John Azzopoardi
Sep 24th 2012, 12:10
most type of diseases are heavy burdens to carry. It is very easy for someone healthy to know the sufferings someone goes through. That is why we need support groups so that someone who needs to talk about their suffering have an outlet where they can go. Any kind of suffering due to disease is always a big burden on an individual and we should do everything in our power to lessen and in some way alleviate that suffering.
Philip Pace
Sep 24th 2012, 11:58
The explanation coming from the Malta Parkinson Movement is rather brief and not in full information. It omitted another indication such as that the walk turns into a shuffle. There was no mention that it is heredity.
Re the article what does morphine have to do with the disease, I ask?
No mention of levodopa. The previous drug which was Simemet administered now it is Madopar.
I had my father (1984) and my brother Godwin (2005) who succumbed to this disease and there is no proof that it can be overcome by surgery, drugs or something else! One TRIES to control if discovered at a young age >Michael J.Fox<. My brother used to take 1000mgs of madopar every day to no effect.
Used to feed, wash him clean after toilet, shave, put him to bed and help him all days, all weeks, all months and all years, around 4 years. It cause depression to those around, as the suffering person is your top priority. Everything becomes secondary. Your life, your job, your affairs, everything! No local hospital serves well for the patient. You have to take him home and watch over him!
It is a very cruel disease as my I watched my brother slowly succumbing to it as he even lost his voice.
Perhaps full and explained information should be the next main article from the Malta Parkinson Movement so that people would be totally aware of this very terrible disease. I can be contacted via the email available to them from the Times and can explain more on this subject that I have known about since 1983 when the noted professor at that time did not even realise this and yet alone understand it. I discovered it on my own by searching and reading.
Paul Borg-Wallace
Sep 26th 2012, 20:48
Firstly, the Morphine I take is for the pain I have at the moment while I am waiting for a knee replacement. This was caused by a fall I had due to my shuffle and falling; another effect of Parkinson's.
Parkinson's has not been proven to be hereditary.
One thing about the condition is that every case is different so there is no "typical" case which one can refer to.
When I began my Parkinson's drugs programme, I improved greatly. They are increased as I need them.
I am sorry you had such a tough time with your family's problems caused by the condition. Maybe the way you can use your experience to its best advantage is to use your knowledge to help others and give advice, which you seem to be doing so well already.
G. Abela
Sep 24th 2012, 11:39
My father suffers from this disease too. He has his good and he has his bad days but thanks to the Maltese Parkinson's Society he has friends who he can share his burden with. May God help all those who for some reason or other have been effected by this illness.
Thank You.
Ms M Cumbo
Sep 24th 2012, 11:13
I see many patients suffering from Parkinsons. It's very sad. Mr Wallace you are not alone, Parkinson's is everywhere.
David Farrugia
Sep 24th 2012, 09:52
My uncle suffers from this malady as well. This disease is a heavy burden to carry. I pray for all Parkinson's sufferers to persevere and do no loose heart. It is important that such people to have constant support from family members.
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