Breathing Difficulties

The first symptom people generally think of with Parkinson’s disease is shaking, and possibly they may have heard of tremors, shuffling, or freezing. If I were asked to quickly list all the symptoms I suffer from, I would have a hard time for there are many and still counting! The latest symptom to add to my long list is occasionally  having difficulty in breathing. This symptom may not be as common as tremors or shuffling, but for those patients like myself affected by breathing difficulties, it can be rather scary.

It was explained to me, that just like walking can be severely inhibited by frozen or rigid painful leg muscles, one’s breathing can also be restricted due to the core trunk muscles which control the inflation and deflation of the lungs. It’s therefore understandable if these muscles become rigid, that ribs and lungs become cramped and breathing becomes problematic.

Apart from the fairly obvious immediate concerns affected by the inability to breathe properly, this symptom has further disturbing ramifications which can impact quality of life. I am well aware that the risk of chest infections rises if the lungs function poorly, by the reduced ability to cough properly. I have also noticed on occasion when my breathing is not good, making it difficult for me to talk, my speech is reduced to a husky breathless voice (far from sexy I can assure you!). We make light of this when it happens, and since I’m known in my family for being quite the chatterbox, suddenly not able to talk with full gusto, you can imagine the jokes that ensue.

No matter what new symptoms Parkinson’s throws at me, my family and I continue to live life to the full and maintain a sense of humour.

Cycling for Gaucher disease

On September 6^th, Madeleine Abramson participated in a yearly sponsored bike ride from London to Cambridge, again choosing to represent Gaucher disease in aid of raising funds and awareness of this rare disorder. 

As always, the race started from The Royal Free Hospital in Hampstead (London) and ended at Addenbrookes Hospital in Cambridge. A rather appropriate start and finish line as both hospitals have excellent Gaucher research centres.

There were a total of 76 riders, of which 69 were riding in aid of Gaucher disease and the remainder for various other charities. Amazingly two of the riders were Gaucher Type 1 patients who were accompanied by their families. What a great achievement for fellow sufferers to participate in such a ride. The weather was perfect – a sunny beautiful day. The 100 km route (63 miles) took the riders through some beautiful English villages such as Buntingford, Nuthampstead, Newton, Sheldon and Newgate Street. With four designated stops, each offering wonderful refreshments, it took Madeleine 7 hours to complete the ride. A grandmother and her daughter, kindly volunteered again this year to bake a delicious assortment of cakes which were served to the participants when they arrived at the finish line. 

It’s not too late if you’d like to donate, so please go to the official “mydonate” site. Thank you Madeleine on behalf of all Gaucher patients and their families. If you'd like to read more, take a look at my article in The Huffington Post.

Vulnerability

No longer steady and sporting the Parkinson’s shuffle as I walk, I suddenly am very conscious of how vulnerable I must appear. I hadn’t given it a lot of thought till recently. Less desirable parts of town that once I wouldn’t have thought twice about briskly walking with an air of confidence, now pose a threat. I’m beginning to understand why some living with Parkinson’s are reluctant to go out. Looking like an easy target, makes me feel distinctly uncomfortable.

I remember some years ago, my elderly mother had her purse snatched when a young pick pocket focused his attention on her. As he took hold of my mother’s purse he gave her a shove which sent her unsteady small frame to the ground. Thankfully she didn’t break anything, but was a little shaken and sported some nasty colourful bruises for a while. However a friend of hers who had her bag snatched, wasn’t so lucky, and when thrown to the ground, unfortunately broke her hip. Regrettably the elderly, infirm and disabled are sadly prone to being taken advantage of by unscrupulous persons who have no conscience.

With this in mind, I’m acutely aware of how easy it would be to fall or be pushed over in a crowded unsafe environment. Markets, busy streets with throngs of pedestrians,  or large gatherings; whether an easy target for a thief, or simply a casualty of overly  exuberant youngsters not paying attention – the outcome could be awful. So as much as I hate it, common sense tells me to steer clear of these possible dangers from now on. 

Sharing one's story with others when living with a disease brings greater understanding and general public awareness. Take a look at my article in The Huffington Post for maybe you too have a story to share. 

Get Well soon

A very common phrase, that literally rolls off the tongue “get well soon”, meant with sincerity, but in certain circumstances is inappropriate, particularly when a person isn’t going to make a recovery. Have you ever felt awkward unable to think of what to say?

Not knowing what to say often leaves people uncomfortably speechless, and in some cases resulting in avoiding altogether the person with declining health. I believe it’s always better to say something rather than nothing, no matter how lame or cliché you think it may sound. I can assure you, receiving some reaction or comment is very much appreciated, rather than silence and being ignored.

Having someone deliberately avoid you because they are embarrassed and don’t know how to handle the situation is unfortunately more common than you’d think. I’ve experienced this personally and had someone turn the other way, knowing full well they’ve seen me. I couldn’t believe how a person could be so cold and lack empathy. No response can be most hurtful, so no matter how hard you may find it searching for the right thing to say, just stop and think a moment how you would feel were the shoe on the other foot.

Making a good impression and leaving one's mark is something we all aspire to. However there are times when it's best not to leave a mark. Take a read of my article in The Huffington Post.

Swimming

A girl friend thoughtfully took me to our local pool one morning. It was a fantastic  feeling being in the water and I felt almost “normal” in the pool (whatever “normal” is!). I hadn’t been swimming for over 3 years and I had wondered if I’d sink to the bottom like a weighted corpse. But I needn’t have worried, for the repetitive natural action of swimming felt so good, it was as if I’d been to the pool just last week. I was able to swim much more than I had envisaged, but what amazed me more than anything, was whilst buoyant in the water, I could barely feel the Parkinson’s at all. Of course I paid for my enthusiasm dearly later on in the day, and had the most dreadful night.

The longer I live with Parkinson’s, the more I suspect how little we all understand about this unpredictable disease. If anyone had seen me in the water that day, they would never have thought I suffered from Parkinson’s. However, the moment I stepped out of the pool, I was reduced  back to shuffling and Parkinson’s was once again in full swing. How can I expect other people to understand what I go through, when I hardly understand it myself?

Perhaps there is a solution: find an activity of a repetitive nature that allows you to participate and joyously push Parkinson’s out of the way. I would stay in the pool all day and night if this kept Parkinson’s out of my life. Maybe a job at the dolphinarium would be the answer, where I could be waterlogged to my heart’s content. I fear I may end up looking like a wrinkled prune and smelling of fish, but this would be a small price to pay!

Depressed or frustrated? - it's a fine line and a topic for my article this week in The Huffington Post.

Keeping up with Constant Changes

Living with a long term chronic illness, (and I live with two!) really pushes one to the limit and I find my husband and I are on a constant learning curve as both diseases progress. How can anyone prepare you for what lays ahead? The only thing one can predict, is the unpredictability of both diseases.

Just when we think we understand and change our mind-set to accommodate lifestyle changes, something new happens and throws a spanner in the works. Being flexible to an altering situation that effects one’s daily life is imperative. Unusual circumstances can present difficulties that you hadn’t even thought about. It can be something as simple as brushing your hair.

I keep my hair long, as this way I can neatly tie it back and don’t have the worry and inconvenience of visiting the hairdresser every six weeks or so. I recently realised I’m unable to brush my hair properly, and with a full thick head of long hair, if not brushed thoroughly, I could end up looking like I’ve been pulled through a hedge backwards! Not a good look for anyone! So it was off to the hairdresser this week to have a new shorter manageable hairstyle. Life is all about changes and going with the flow. 

My latest article in The Huffington Post is dedicated to my dear mother-in-law who passed away a few days ago, and shall be very much missed.

This is Your Life

Do you ever feel that everyone around you is experiencing problems of one kind or another? This is life! I recently wrote to someone that life is full of ups and downs, and anyone who doesn’t experience this, isn’t really embracing life. If we didn’t have any “downs”, how would we be able to recognise and appreciate the “ups”?

Supporting one another when our spirits need to be lifted, receiving words of compassion and understanding, gives us renewed strength and the ability to carry on. It should be a two way street, being there for those you care about, and someone being there when you need a shoulder to lean on, a kind word and a smile.

I was once told that it takes fewer muscles to smile than it does to frown, and with this in mind, I usually have a smile on my face. I remain positive and optimistic, clinging to my favourite four letter word: “hope”.

Having the tools to cope living with a chronic disease is paramount. They are not the kind of tools you can pick up from the hardware store, but rather abilities we hold deep within ourselves, that are either inherent or learnt out of necessity. A sense of humour is valuable in these situations, but of course one cannot suddenly acquire a great sense of humour – either you have one or you don’t! Most fellow sufferers I've come across, appear to have a good sense of humour and rely heavily on their wit, sarcasm or dark humour, albeit slightly macabre to get them through each day.

Now here's a guy who has a great sense of humour and won't give in. Take a look at this short amusing video by Mitch Faile - you'll be smiling I can assure you! 

The world is a small place, but having Parkinson’s it appears to be getting smaller! Take a moment to read my article “It’s a small small world” in The Huffington Post.