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Elaine Benton

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Take a Glimpse Into My World

Posted: 31/01/2013 23:00

I'd like to share with you a glimpse into the world of living with Parkinson's from a patient's perspective. Being diagnosed with any chronic degenerative disease can be a shock to the system. Accepting and digesting such news is very individual, and a process that covers a gamut of emotions.

Some hope the diagnosis is wrong or remain in denial. Many sufferers struggle with depression which is a common symptom of Parkinson's and to be perfectly honest, who in their right mind wouldn't feel down? Other patients decide to stand up and fight, refusing to let this disease get the upper hand. I am of the latter, have a strong fighting spirit, and decided to do something pro-active. I was diagnosed at age 44, and since then have been campaigning, my aim: offering support to fellow sufferers and caregivers whilst creating greater awareness to a disease who everyone recognises by name, yet actually know little about.

Talking to a group of young women, I asked if they'd heard of Parkinson's, to which they all energetically nodded their heads. I then inquired if anyone could tell me what the symptoms are. A hand shot up and a lady said "shaking." I agreed, and looked around the room for any other comments, but there were none. Needless to say I took this opportunity to enlighten the audience.

One of the first symptoms, which usually goes unnoticed as it is gradual and not disturbing, is losing one's sense of smell, which I must confess, on the odd occasion is not altogether a bad thing! However, missing out on the smells of freshly brewed coffee, cinnamon buns, flowers or any of the hundreds of wonderful aromas is upsetting, but let's face it, it's not the end of the world. The symptoms that start to follow are remarkably more disturbing, such as shaking or tremors. There are several types, each as unpleasant and annoying as the next, and strange as it may sound, not everyone suffers from the same symptoms. A resting tremor, as it plainly suggests, when sitting doing nothing one's hands or legs shake. There are also internal tremors, although not visible to anyone else, the sensation is highly unpleasant. Dystonia, which is the most disturbing for others to watch, and exhausting for the sufferer, as it's like doing a Jane Fonda work out 24/7 (great for losing weight I might hasten to add!)

Slowness of movement (bradykinesia) is yet another delightful addition to the Parkinson's malady. I used to be as quick as a flash, a master of 'multi-tasking', and thoroughly enjoyed walking everywhere. To suddenly have great difficulty in walking, a change in my gait, shuffling and dragging my left foot, I find incredibly annoying. Not to mention 'freezing' on occasion, where one is abruptly rooted to the spot and unable to move. This is also accompanied by a general stiffness and rigidity, particularly in the upper body and arms which no longer swing when walking. Like so many women, I love pretty shoes (pathetic I know!). Sadly long gone are the days when I would wear high heels, which now would be plainly dangerous, for another symptom is poor posture, hunched shoulders, and lack of balance. Annoyingly I'm constantly told by my ever loving family, to sit or stand up straight. As for falling, I've lost count of how many times I have fallen, but thankfully I haven't caused any serious damage to the furniture, but have resulted in some rather colourful bruises.

As if this isn't enough; insomnia, difficulty in swallowing, choking on food or one's own saliva, loss of dexterity in fingers, stinging eyes from lack of blinking and losing one's facial expressions. There are quite a few more symptoms as the disease progresses, but maybe you've heard enough for one day!

Parkinson's, is an unwanted gate crasher, who arrived at a party without an invitation and refuses to leave. It envelopes every aspect of one's life, just as a blanket of snow carpets everything in sight. However this blanket gives neither warmth nor comfort, but impedes one's life every day with its many debilitating symptoms, and side effects of medications. I'm still here hidden somewhere inside this rigid slow body, my emotions not visible from behind a frozen mask that used to be a smiling face with expressive eyes. I have little strength left to keep up the fight, as Gaucher and Parkinson's disease overpower my body. But I have a stubborn streak in me, and refuse to give in, apart from which, I have to write another article for next week's Huffington Post, so I guess I'll have to carry on fighting!

https://www.amazon.com/author/elainebenton

 
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01:49 PM on 02/02/2013
I don't have PD, am not an expert on PD, but I have lived around generations of PD sufferers of which there are various conditions from early to late onset, The symptoms are not always the same and bouts of remission and relapse are common. Things which seem to have a noticable effect are bad sleep patterns, stress, illness (colds and flu, herpes/cold sores etc) anything which stresses the general wellbeing of the sufferer, including overwork and bad food. having said that, excercise, especially walking outdoors in the fresh air, gardening and relaxation, seems to have a beneficial effect and seems to relieve symptoms, maybe it's due to increased oxygenation or stress relief I don't know but it seems to be the case. I would be inclined to say good fresh food, lots of vegetables and fruit, many varieties might be advantageous. I say this because the people with whom I am very closely associated, (three generations of early onset sufferers) they all have a very good fresh food diet with almost no meat. The oldest person in the group (80) has always eaten the most meat and has the worst symptoms, even so they are not disabling. I know this is all iffy and circumstantial, but that is often all we have to go on, just little things that we seem to pick up on. What I would like to say to PD sufferers is, it doesn't have to be the end of your life.
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HUFFPOST BLOGGER
Elaine Benton
06:20 PM on 02/03/2013
I agree with you that a good healthy diet is certainly important, but unfortunately it cannot alleviate symptoms or stop the disease from progressing. Some sufferers live many years and are able to lead fulfilling lives. However, there are others that appear to have a more aggressive form of Parkinson's, and despite a good healthy diet, the best of medical care and support of family and friends, the disease is very debilitating. Every patient is different, and what works for one, doesn't necessarily work for another. Parkinson's is very individual and no two patients are the same.
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edmurfin
Old man, on Bonus Time:-)
07:33 AM on 02/02/2013
My admiration for you, Elaine, is undiluted - you are a brave woman and i pray your strength, humour and determination will always help you endure your illness and that one day you will begin to become well again. Before reading your post, i was feeling somewhat sorry for myself because of two incurable conditions, medication for each of which is contraindicated for the other. I've been trying to self-treat with non-medicinal strategies for years and it's been hard work and will continue to be. Part of the strategy is exercising - something I'm lucky to be still able to do could i get motivated. Your cheerful words shame me, for you have far, far more to battle with than i. So thank you, Elaine, for the inspiration to stop moping and feeling sorry for myself and to smile more and keep trying. Bless you and your endeavours to master the 'enemy'.
10:52 PM on 02/01/2013
I cant imagine what its like to be diagnosed with this terrible illness at 44 my late dad had parkinsons and he didnt have the tremors or the shakes till later I did notice that he would do what they call pin rolling without even being conscious of it the good thing is he never lost his sense of humour thank goodness my son is trying to raise money at the moment for parkinsons I wish you all the best elaine.
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HUFFPOST BLOGGER
Elaine Benton
05:55 AM on 02/02/2013
Sorry to hear that your father had PD, but admire him for keeping his sense of humour, which I believe is a vital coping tool that many of us use. I wish your son the very best of luck in raising funds for Parkinson's. Thank you for taking the time to comment and I wish you and your family good health. Enjoy the weekend.
05:13 PM on 02/01/2013
Note to Elaine: I was surprised to see a reference to Dystonia in your blog. I'm a Dystonia sufferer (and a fellow author!). Like Parkinson's, Dystonia takes many forms, and you touched on a particularly 'animated' Dystonic symptom. My Dystonic Tremor is not as severe as the symptom you mention, but it's still very visible and extremely frustrating (I'm also a former musician who can no longer play due to this pesky tremor). My other regret is that Parkinson's and Dystonia are regarded as different when, in fact, they have numerous similarities. There are more than 70,000 Dystonia sufferers in the UK, but hardly anyone has heard of it. Parkinson's sufferers, however, can take some comfort from knowing that it's very well know. Keep on keeping-on Elaine. Maybe we could team-up on a joint Parkinson's - Dystonia article sometime?
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HUFFPOST BLOGGER
Elaine Benton
08:25 PM on 02/01/2013
There are so many symptoms, and everyone is different. There seem to be no two same patients with the same story. Parkinson's is very individual. I wish you well, and hope you continue with your writing.
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vividrick
I came, I saw...I had a cup of tea!
04:58 PM on 02/01/2013
"...so I guess I'll have to carry on fighting!"

And carry on fighting you shall Elaine.
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HUFFPOST BLOGGER
Elaine Benton
08:26 PM on 02/01/2013
Thanks for your encouragement and support. I am determined not to let Parkinson's get the better of me.
02:05 PM on 02/01/2013
Elaine Benton describes Parkinson's symptoms.
The story gives the impression that Parkinson's is a mild condition and that the disease progresses so slowly that it's adverse effects are nominal.
A slight shake and loss of smell, slowed movement and stiff muscles sound like the normal ageing process.
Her account is quite accurate but understated.
It is common for people with Parkinson's to underplay the effect this disease has on them, when in practice the combined symptoms of loss of balance, cramps and stiffness, slowness in movement, relentless tremors, speech impairment, blurred vision, clumsiness, impaired judgement, mood swings, undue anxiety, depression, reduced libido, loss of motivation and energy, digestive problems, insomnia with REM sleep disorder and the fluctuating yet constant nature of all these symptoms make this a disease to be feared.
The treatment meds then provide an add on to the above problems as they can cause nausea, OCD to an extent that can be psychotic in nature and the meds regime expands as the disease progresses so the patient is taking an array of pretty coloured tablets which seem to achieve ever less effect as the symptoms increase their relentless grip.
The origin and cause of Parkinson's is not known and the condition can afflict anyone.
There is no known cure.
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HUFFPOST BLOGGER
Elaine Benton
08:32 PM on 02/01/2013
I may have given the impression that Parkinson's is a mild condition, but this is not the case at all. I literally battle each day, and I am unfortunate to suffer a second chronic genetic disease which is very rare, called Gaucher. My life is far from easy. I experience a wide array of typical PD symptoms but despite my great difficulties, I try to remain cheerful and positive. I pray and hope that a cure will be found. There is nothing that I would wish for other than to be relieved of Parkinson's, for myself and my family. It is a cruel, debilitating disease, with so many varied symptoms and side effects from medications, which completely changes one's life.
11:21 AM on 02/02/2013
Elaine,
Your view on Parkinson's was well written and informative.
My comments were intended to reflect the "angry attitude" which comes to
those who are diagnosed and feel powerless in the face of this disease.
The degenerative nature of Parkinson's is a bad aspect as one feels
"This will only get worse".
Having said that, there are those whom develop light symptoms and go for years with little trouble.
Best wishes from a PWP.
01:43 PM on 02/01/2013
Amino Acid treatments (Intravenous infusions) work with Parkinson's Disease. The causes are found in how the brain deals with Dopamine:~

With Parkinson's disease the nerve cells work by supplying dopamine to another part of the brain. Most treatments for Parkinson's disease work by increasing the brain's dopamine levels. Drugs are prescribed to increase the brains ability to produce dopamine but these drugs often have harmful side effects. Amino Acids protocols supply the right balance of Amino Acids with no adverse side effects. This 'treatment' has been suppressed by pharmaceutical companies in the US, but it is beginning to become more widely accepted. I recently visited a UK clinic (the first in Europe to be licensed) and the results were impressive. I send alcoholics and eating disorder patients there who have tried most other treatments and one guy was 'well' in 5 days and now talks to my clients to assure them how effective this programme is. There are huge similarities in the causes of many illnesses and Amino Acids play a major part.

I would find the money to have a course at this clinic - it isn't cheap (£6,000 to £10,000 dependent upon individual needs) It is very cost-effective when compared with other private clinic treatments. You are assessed by the clinic's Genomics Doctor, and your results are analysed in a bio-report to ensure you get the right balance of Amino Acids and Vitamins; just taking Amino Acids should not be attempted by anyone except with medical supervision.
04:56 PM on 02/01/2013
It might be cost effective if you can afford it. Most of us are just ordinary people who have contracted this complaint.
We usually end up being unable to work. As for paying £6 - £10.000 I think here is another person who does not live in the real world.
I take it the treatment would be on going and not a cure?
07:13 PM on 02/01/2013
There are numerous ongoing trials into Gene Therapy/Dopamine enhancement for PD. Addenbrooke's Hospital found a marked improvement (up to 64% improvement in motor function) in those given high-dose infusions. NICE approved therapies are massively expensive. I never said this treatment was cheap or available to everyone, but this is the real world. PD treatment costs millions. The more people that pay for this private programme and show positive improvements (the US figures are nothing short of miraculous) the cheaper and more available it will become. The clinic (the only one in Europe licensed to do so), is not making any money and the owners and some staff are not taking salaries. So for the price of a new kitchen or a secondhand Mondeo, I think it is well worth the money. The average addiction clinic charges well over £1000 per week (some £5000/wk) and you need at least 6 weeks minimum. With addiction, the results after 5 days are outstanding. Addiction clinics find many people willing to pay £6000 for their treatment. Amino Acid treatment works with many illnesses related to low dopamine or depression. I'll ignore your last question!
Dr Kieran Breen, director at the charity Parkinson’s UK: 'Gene therapies hold great promise for people with Parkinson’s, as they could mean an end to the daily regime of drugs that most PDs currently face.
http://www.dailymail.co.uk/health/article-2128956/Parkinsons-disease-sufferer-Sheila-Roy-write-time-15-years-thanks-new-gene-therapy.
08:02 PM on 02/01/2013
The cost of UK PD therapies on the NHS are huge - this is the real world. If more people paid for this Amino Acid treatment privately the cost would come down. It costs less than the average new kitchen or secondhand M0ondeo - unfortunately high medical costs are the real world. The success of Amino Acids treatments for a wide range of dopamine/protein defficient illnesses and addictions in particular are very high and if it improves life for some lucky PD patients who can afford a secondhand Mondeo, I think it represents great value and is available now in the real world.
60+% improvement in motor function for some PD patients is life changing. Read about Sheila Roy - Google. That is the real world.
07:28 PM on 02/01/2013
If anyone would like to learn more about Amino Acid IV Treatment for a wide range of conditions, please email me neuroamino@aol.com
08:03 PM on 02/01/2013
apologies it should be neuroaminos@aol.com