Pain Management of Parkinson’s

Whoever said you don’t have pain with Parkinson’s either was seriously misguided in concealing the truth for the assumed benefit of the patient or simply doesn’t understand Parkinson’s in depth and is ill informed.

Living with pain 24/7 has to be dealt with and cannot be brushed aside as a figment of one’s imagination or simply something one has to put up with. When it comes to chronic on-going pain, although I am not a doctor; as far as “pain” is concerned, I am unfortunately a patient with a lot of experience! 

Serious pain interferes without doubt in every aspect; one’s daily activities, mood, naturally sleep, for who can sleep with throbbing pain throughout one’s body? I sure can’t, and I’ve been living with pain for years, so it’s certainly not from a lack of practice! Loss of appetite can also be attributed to pain, for trust me, nothing appears appetising when suffering pain. Physical activities obviously are affected and this is where the dangerous downhill curve of functional decline and general quality of life including social withdrawal can change drastically. When you are in chronic pain, you don’t feel like being anywhere, with anyone, doing anything. It’s just all too much.

However, this is where I go the extra mile because I refuse to let Parkinson's get the better of me. I continue to take on public speaking engagements, despite the pain, for this is where I feel I can truly contribute something unique, teaching doctors in particular what it’s like to be in my shoes. When in the past I’ve spoken to an audience of doctors at a conference, I am often asked if I’d like to sit whilst delivering my 45 minute talk. I always decline this invitation, no matter how tempting it is, for my aim is to grab the audiences attention, and sitting down immediately puts a speaker at a disadvantage. So I take a pain pill about 20 minutes before I am due to speak, and manage to deliver my talk effectively, standing the entire time. Is it any wonder why my husband says I'm 'stubborn'.

Have you got a beautiful tablecloth you never use for fear of  a stain or two? What has this got to do with Parkinson’s I hear you say? Take a look at my latest article in The Huffington Post and find out.

Cycling for Gaucher disease

With October almost upon us, many events have been planned around the world to raise awareness as we mark October as Gaucher Awareness Month. Sponsored walks, runs or bike rides have become popular ways of raising funds and awareness over the years for many charities and causes.

I would like to thank Madeleine Abramson on behalf of all Gaucher patients for recently participating in a sponsored bike ride from London to Cambridge to raise funds towards The Gaucher Association in England whilst creating greater awareness of this rare disease. The race consisting of approximately 100 riders, started from The Royal Free Hospital in Hampstead (London) and ended at Addenbrookes Hospital in Cambridge. A more appropriate start and finish line could not have been found, for both these hospitals have centres of excellence in the study of Gaucher disease.

There was just a little rain about an hour into the ride, but fortunately after a short shower, the weather cleared up and the remainder of the ride was in sunshine. Most of the way there were some serious hills to struggle up and only the last ten miles were relatively flat. The marshals and helpers along the way were cheerful and helpful and the route took the riders through some beautiful English villages and stunning countryside. With stops it took Madeleine 6 ½ hours to complete. A grandmother and her daughter kindly volunteered to bake delicious cakes which were served to the participants when they arrived at the finish line. If you would like to donate, and it's not too late, go to the official "mydonate" site.

(Photo above courtesy of Alex Ingram.)

My article this week in The Huffington Post addresses an issue that can become quite a sore point. If you suffer from Parkinson's, do you know when to stop driving? 

Dyskinesia is not a good look

Summer has finished, and according to the displays of “New Collections” in the clothing shops, fall has arrived. Somehow the new collections look suspiciously like last years’ or was it the year before? If you keep anything long enough, it’s bound to come back into fashion. Nonetheless the fashion industry always manage to bump up the prices, all because it’s a new season. Finding a good look for “you” is half the battle I found, but now a little wiser what looks best on my short frame, I can say with hand on heart, wearing a long dangling necklace when you have dyskinesia should be avoided at all costs. Suddenly what looked very attractive laying on the dressing table, once hanging around my neck merely draws attention and accentuates the annoying dyskinesia that people with Parkinson’s have to endure.

It’s bad enough my left leg doing its own rendition of the highland fling, and my head moving around, I look like I’m agreeing wholeheartedly with any conversation that is going on. Maybe this “look” would go down well at Wimbledon, watching tennis, turning one’s head from one direction to the other as you follow the ball. Wearing a long dangling necklace, is a definite no no! As the necklace slid from side to side, I wondered whether I would end up with whip lash. Hence said necklace has been relegated to the pile that is accumulating waiting to be given away.

On a more serious note, dyskinesia is extremely unpleasant, not to mention exhausting. For loved ones it is agonising to watch, feeling helpless and unable to stop these involuntary jolting movements. After a close friend having witnessed for the first time a bout of dyskinesia, she made a very good observation. Generally when having a slipped disc, one is advised to lay still and not make any twisting or turning movements ……well if you have Parkinson’s there is little you can do to stop the dyskinesia, which must exacerbate a slipped disc no end, lengthening the time of healing considerably. Is it any wonder that my back is taking so long to get better! 

When living with Parkinson's or any other long-term illness, planning for the future is vital and should not be dismissed. Are you an ostrich or a beaver .....not sure? then take a look at my article this week in The Huffington Post.

Gaucher & Parkinson’s Four Years Later

Tomorrow will be exactly four years since I began blogging about living with chronic disease, in particular Gaucher and Parkinson’s. When my husband first suggested the idea to me, I must confess, I didn’t even know what a blog was! Admitting I was technologically challenged would be a British understatement to say the least. However, once the concept was explained to me, and I began a daily ritual of writing, it was hard to stop. Through trial and error, the initial many questions that no doubt drove my normally calm and patient husband, up the wall, there was no stopping me. I wrote every day consistently for two years, but unfortunately due to a deterioration in my health, I had to reduce my writing at that point to once a week. So for the last two years I have continued to post a blog every Friday, along with writing once a week for The Huffington Post.

Four years is a long time, and I have learnt much along the way, Gaucher and Parkinson’s taking me on a mystery tour of my very own. Never quite sure what’s going to happen next, it’s been quite a journey, and one I have shared with you. I am on Enzyme Replacement Therapy for Gaucher which is administered once every two weeks intravenously, and this medication keeps the disease pretty much under control. I also take a cocktail of various pills to make the symptoms of Parkinson’s bearable, but unlike Gaucher, it is an aggressive degenerative disease and my condition is not what it was four years ago when I began writing a daily blog. Some patients are lucky to keep Parkinson’s at bay and live for many years with little change or deterioration, others like me, are not so lucky.

However this does not deter me; I forge ahead with strong conviction, knowing I have purpose as an advocate for both diseases. I shall continue to write and speak publicly, for these are ways I can contribute to society. Speaking for those who have no voice, educating the general public and giving doctors the opportunity of hearing a patient's perspective. I wont give up – call me obstinate, but I refuse to lose hope.

I would like to say a big thank you to Madeleine Abramson who will be cycling on 7^th September in a bike ride from London to Cambridge. This is Madeleine’s third year cycling for charity and proceeds will go to support the Gaucher Association. On behalf of all Gaucher patients, thank you Madeleine for supporting us in your sponsored ride this year and helping bring awareness to this rare condition. Wishing you the best of luck Madeleine and hope the British weather holds out on the day. If anyone would like to sponsor, please go to the official "my donate" site.

If you'd like to read a little more in my article on The Huffington Post, I invite you to take a look at: "Gaucher & Parkinson's Take A Hike!"