A fabulous invention

I came across the handSteady cup whilst searching the Internet and immediately seeing its potential not only for those with Parkinson's, arthritic hands, but anyone with difficulty in moving or who is bedridden. After trying out this fabulous British invention (only sorry I didn't think of it first!) I have to tell you that it's one of the most useful aids I have come across so far. Not only is it attractively designed so one isn't left with the feeling of drinking from a child's plastic cup, it really does work. The lip of the cup has been carefully designed to prevent drips, (there is a lid included should one need further assistance) the handle is easy for a comfortable to grasp, and the cup is light weight with a rubber like coaster making it non-slip. I tried it out sitting in an armchair, sitting at the table, but most impressively is how the cup works when I was in bed laying down, with just a pillow propping up my head. No spills - incredible! This cup is an absolute must for anyone with Parkinson's or who has difficulty in holding a regular cup. Looking at it's ingenious gimbal like handle I thought to myself there's no way this can go in the dishwasher. After reading the instructions on the box, much to my amazement I found that not only is it unbreakable (and let's face it if you have Parkinson's I'm sure like myself, you've broken many a glass or cup!) this incredible cup is dishwasher safe! How amazing is that? As you can tell from my enthusiasm - I am very excited about this new find. If you would like to know where you can get one, or see for yourself the video which will show far better than I can tell you, please take a moment to look at handSteady. 

Bad memory

A local shop I often frequent is a small family run business. The first time I went in there, the lady enquired as to why I was walking with a crutch, so I explained I have Parkinson's. Satisfied by my simple one line answer, she went ahead and served me. I happened to drop in several days later, to buy something, and she asked me again why I was walking with a crutch. I felt a moment of deja vu, but politely told her I suffer from Parkinson's (I thought it was a little too much information to add I was also born with Gaucher disease). Content, she nodded her head and asked me what I needed. The third time I went in to this particular shop, I was greeted by the same smiling lady, and she asked me "You're still walking with that crutch, aren't you better yet?" Astounded by her question, I almost felt I was in the Twilight Zone, and beginning to wonder who had the bad memory and who had Parkinson's! I told her that one didn't get better from Parkinson's, that it's a degenerative disease and unless a cure is found soon, I would only be getting worse. "That's terrible" she said, flabbergasted at this appalling information. I agreed with her that it is terrible. "You shouldn't stand for that, you should do something about it" she told me with great verve in her voice. So I began to tell her of how I had written a collection of poems that was made into a book, and hadn't stopped writing since. I told her about my daily blog, public speaking and writing for The Huffington Post. I had only dropped in there to buy some cinnamon, which should have taken me a minute or two, and instead I ended up sitting down and speaking to her for almost 40 minutes. As other customers entered the store, they were told to shush and wait. I ended up with a small attentive audience in our corner shop who now know about Parkinson's. Education is the key, and we may presume that everyone's heard of Parkinson's, but clearly not; I can see that my work is far from done.

Twitter

I have a dinosaur of a phone since I cannot manage the new phones with touch screens, and my typing speed leaves much to be desired. The dexterity in my fingers and hands has been compromised due to Parkinson's, making it very difficult to use the new hi-tech equipment that so many are using and rely on today.

I have received several "Requests" to join Twitter, and I thank you all for your invitations and interest. I hope you understand, but I have to draw the line somewhere, as I spend much of my time and energy every day writing this daily blog, once a week an article for The Huffington Post, and every e-mail I receive from fellow sufferers or caregivers, I answer personally. I also do the occasionally public speaking engagement to bring greater awareness to chronic illness and in particular Gaucher and Parkinson's as I speak from personal experience. If you have been following my blog and articles, you will no doubt appreciate that I am not in the best of health (a British understatement if ever there was one!) and therefore cannot take on anything more. This is why, after some thought, I decided not to join Twitter - I'm sorry, but I cannot handle anything more. I will have to leave the Twittering to someone else!

Curling toes

A frequent symptom of Parkinson's is the curling of one's toes. Apparently this toe curling is more common amongst Young Onset Parkinson's patients, occurring on the side of the body that is prominently effected. The spasms are part of dystonia which can cause the toes to curl in an uncomfortable claw-like position. My toes, curiously only on the left foot seem to have a mind of their own, and uncontrollably want to clench and curl all the time, making it jolly difficult to walk. No sooner have I attempted to straighten them; they resume their curled position once more. Wearing socks with closed shoes helps somewhat with this problem, but now the warmer weather is here, sandals make this pesky Parkinson's difficulty worse. I have yet to find a way of wearing sandals and keeping my toes straight. If any patient has some suggestions or helpful tips regarding this annoying symptom - please do let me know.

I got rid of my high heeled shoes a few years ago, realising I would not be able to wear them again. This morning I found one last pair, tucked away in the back of my wardrobe like some guilty secret. I'm afraid I haven't thrown them out yet - I didn't have the heart to. They are my last piece of evidence that I once wore stiletto high heels, and could elegant walk, or dance like anyone else. I know it sounds silly, but I can't bring myself to remove them. Maybe next week I'll come to my senses and throw out these shoes that I will never wear again.

My latest HuffingtonPost article about 'Sexuality and Disability' is now up on-line if you'd like to take a look.

Life is what you make it

You have the power to change your life, the ability is in your hands to live the best possible life you can despite ill health. I don't mean for one moment that you have the capability to cure yourself of Parkinson's, Gaucher, or other illness that to date there is no cure. However, you can make the decision to live your life to the full and embrace the good, whilst not in denial, acknowledging one's disability without allowing it power to take over your life. Living with two diseases makes me look at the world in a very different way, and sometimes I'm short of patience finding it hard listening to people gripe about small inconsequential daily matters. If only they could see what I do, they'd begin to realise and understand how small and insignificant their worries are. Maybe then they could really "live" their lives and make the most out of what they have. Don't sweat the small stuff. I would give anything to magically wake up one morning and no longer have Gaucher and Parkinson's disease, but I know this isn't going to happen. I do remain hopeful however that a cure will be found for Parkinson's, and I pin my hopes on this, which keeps me going. As much as I fight and battle through each day, to some degree I have to live in harmony with chronic disease - I have no choice. I wish you all a very good, restful and enjoyable weekend. Whatever you are doing, whoever you choose to be with - make the most of each moment and situation you find yourself in. If you have good health, don't waste this precious gift that you've been given, for I would swap with you in a heartbeat!

I would like to thank the Parkinson's News who have featured two of my recent articles that appeared on The Huffington Post. 

Parking Angel

A close girlfriend took me out for coffee the other morning, and housebound most of the time I had not been out for a few days, so it was a welcome break. When you can no longer remember how many years you have known someone - it means you've know each other a long time! On the way to the café, I asked if she minded us making a slight detour, stopping at a particular shop to get something I needed. Not having been to this shop for years, I wasn't even sure if it was still there, but as we drew close, sure enough the sign clearly displayed and its doors were flung open welcoming us. This particular street is very busy, a narrow two way road, and nine times out of ten, impossible to find a parking space. I don't know if any of you have a "parking angel", but I usually take mine with wherever I go. In case you don't know what I'm talking about, it's like having the ability of finding a parking space in the most unlikely of times or places - as if by magic a spot appears right where you need it, and especially useful when like myself, you can't walk too far. Right in front of the shop, miraculously a large parking space was waiting for us. I'm not sure if it was my "parking angel" or my friend's (although I forgot to ask if she has one!), but we were so grateful to have found it. We had a wonderful morning out and I thoroughly enjoyed chatting together. Never short of conversation, time flew by all too quickly. I am blessed to have several close girl friends, whose friendship and continued support is something I treasure most dearly.

May Day

In England the very first day of May is celebrated as "May Day". As the warmer weather begins, trees and flowers start to bloom;  this is my favourite time of the year - not too cold and not too hot, and the beautiful blossoms adorn the countryside. Many years ago it was thought to be a season for love and romance, a time to express joy and hope after the cold winter months. "Joy" and "hope" two very important words!

Due to Parkinson's, the body doesn't always respond when we want it to. Sometimes by simply tricking the brain by focusing on something else can help to some degree. I find that loud music with an upbeat tempo can drown out irritating Parkinson's, but I doubt this would go down very well with our next door neighbours if I had the volume turned up high constantly. As for buttons; don't you just hate them? One or two are bad enough, but a cardigan involving 8 or more is simply too frustrating for words! A fellow sufferer told me a trick she's come up with when doing up buttons. She closes her eyes, and somehow this makes it a little easier. I tried her suggestion, and lo and behold she's right. Of course one can't apply this to everything. I don't think it would work when retrieving coins from my purse, particularly in a shop when someone with no understanding is impatiently waiting behind me. Finding what works for you; hearing of tricks and advice from other patients is worth a try and may help with coping and doing small difficult tasks. If you have any suggestions of your own, please do share them with me, and I will post them on this blog so that others in similar circumstances can benefit.