Monthly Archives: May 2013
Since my last post Recognition is the name, E-Petition is the game I have been spending more time than is probably healthy for me on Facebook and Twitter trying to get the petition out there and get signatures.
It is Steve’s birthday next week (he would have been 52) and I have a thing about setting myself targets. I had aimed for 10,000 signatures by Steve’s birthday but by March it was clear that 10,000 was going to be a number too far, so I scaled it down to an achievable 2,500. I was chuffed to bits when we hit the 2,500 target on May 7th. As I type, we are on 2,510 signatures. We still need many, many more but I can only lead the horses (aka the UK public) to the water… I can’t make them drink (aka sign). If you are reading this; are over 18; are a UK Resident/Citizen and have not signed already can I please urge you do so HERE
Twitter is a very useful tool and has the potential to have a message seen by several thousand people in one shot through the use of ReTweet (RT). However, being seen is one thing… The viewer actually opening up the link, and going through the data input and signature verification process via their e-mail boxes, is quite another. On that basis though, the Twitter signatures are more impressive where people are less likely to have been directly linked to Huntington’s. By default my Facebook Friends and Family tend to have a Huntington’s connection albeit through me.
In the process of networking for signatures and general Huntington’s disease awareness, I came across a tweet inviting people local to Greenwich to a ‘TweetUp’. The Twitter Meet Up (can you see what they did there?) was going to be held in a pub not far from me and I thought I’d go along and say hi where people have been so kind and offered support or simply RT’d my plea.
What you have to bear in mind is I don’t go out much. Seriously, I don’t go out. My social life was knocked for six being a carer in the first place but now that I have freedom beyond compare in many ways I simply do not want to socialise very much these days.
Since Steve died I have only ventured out on a couple of family trips; visiting a sick friend who I hadn’t seen for over 10 years; and walking up to the top of the road to the Movement Cafe when they had a poetry open-mike kind of night. I stayed for about an hour; I read a poem; and virtually scuttled straight off after to be home by 8pm.
For my second adventurous night out I decided to play very safe. For a start, as with the Cafe mentioned above, I made sure the place for the TweetUp was not going to be somewhere Steve and I had been to together. I didn’t want to get emotional if memories came flooding back. I even made sure to get there an hour before the start so that I could suss the place out and be sure I was comfortable to stay.
The GreenwichTweetUp was being held at The Cutty Sark Pub Steve and I had lived in Greenwich for nearly four years before his death but with Huntington’s comes walking issues and the need for familiarity. Disabled toilets/wheelchair access was a big factor in our not being able to be more adventurous. When Steve reached the point he needed hoisting into the chair and was wearing pads, I often envied those with babies who could simply use the baby changing facilities when out. For me and Steve, it was a case of having to stay close to home so that we could get him back before he became too wet or uncomfortable. Imagine my surprise when I came across a website called Changing Places after Steve’s death which showed me there are public changing facilities with hoists and adult changing tables. It’s just that people don’t know about them grrrrrrrrrrrrrr We even have one in Deptford
Moving back to the TweetUp (and do scroll to the end of this post if you want to know when the next Greenwich one is) I had a lovely time and met some lovely people but didn’t stay for the whole evening. I had pre-booked a cab for 8.30pm by way of the Cinderella Principles.
Principle 1) An emotional bargaining with myself that I wanted to be back home by the stroke of 9pm as I still feel it hard leaving Steve alone (yes I am aware he is in a casket but that’s not the point). If I hadn’t made that bargain I wouldn’t have felt comfortable going out in the first place.
Principle 2) My new meds and having a life do not mix! Since January I have been prescribed Strontium Ranelate. for my ‘severe’ osteoporosis. It needs to be taken every day at least two hours before food and milk or milk products and preferably before bedtime. As it is, even with leaving two hours gap after my last cup of tea I generally get a reaction in the morning (don’t ask but if you have read my book and the poem ‘The Dyno Rod’ we are talking along those lines.)
On that basis, even if I were to have felt emotionally free to be a social butterfly I would have paid for it the next day as I couldn’t have gone to bed without eating something and I don’t fancy staying up until 2am so that I could take the meds properly. Oh… and whilst digging out a link on the stuff to put in here, I now find there are recently reported issues with it causing heart attacks
That brings me to another project that I am on and yet needs more input from the public. Preferably a member of the public working in the field of medicine or pharmaceuticals.
I’m trying to group the following treatments into what they are prescribed for. Some are simply the trade name of another one but it’s not always clear. Each one has either been mentioned on the Huntington’s Disease Association (HDA) Message Board by a Member as something prescribed for the symptoms of HD, or been mentioned by someone via another source.
A while back I said I would get the list sorted and give it to the HDA as it would be interesting seeing just what people are being prescribed. It highlights how complex the disease is and how much scope there is for reaction and side effects. When you consider we are talking people taking them have limited communication to explain side effects and people may be on several of these drugs at the same time in some circumstances…
Any takers for giving me advice on these please?
- Carbamazepine Tegretol
- Citalopram Citilipram
- Clonazepam Klonopin
- Clozapine Clozaril
- Dimebon (NOW NOT PRESCRIBED HAVING FAILED TO PROVE EFFECTIVENESS)
- DOLMATIL SULPRIDE
- Epilim valproic acid
- Efexor XL
- Fluoxetine Sarafem
- Haloperidol HALDOL
- Hydrocine tablets/patches Scopoderm TTS
- Lithium Eskalith
- Nortriptyline Aventyl
- Movical (For constipation)
- Olanzapine Zyprexa
- Pregbalin / Lyrica
- Quetiapine Seroquel
- Risperdone RISPERDAL
- TetraBenazine TBZ
- Zoloft sertraline
On the poetry front, there are no new poems today but I have put below one from the book which goes with the above meds project. I’ve also inserted a snap of Steve enjoying a read of the paper and a drink outside one of the Greenwich pubs we were able to get to quite easily – The Gipsy Moth.
The Gypsy Moth probably confuses tourists as it’s nearer The Cutty Sark clipper than the Cutty Sark pub, although I am old enough to remember the Gipsy Moth IV .itself when being displayed in Greenwich near the pub.
I have taken the inspiration for this poem from anecdotal evidence. It’s worrying that in some cases the medical profession may prescribe drugs for symptoms, not fully taking into account the adverse effects when combining drugs for a mind and body so fragile. The damage can be irreversible. Tetra B = Tetrabenazine.
Where taking supplements (see ‘The Fighter’) it is imperative that this is mentioned so that the system does not have any other forms of substance in it which may adversely add to the mix.
You’ve got HD; here’s Tetra B,
A common pill to take.
There may be lots of side effects,
But least it stops the shake.
You’ve got HD; now let me see,
You’re feeling so depressed.
Take this one… Citalopram,
You’re bound to feel less stressed.
You’ve got HD; how can this be?
You lie most nights awake.
Here’s Zopiclone to add to mix,
A better sleep to make.
You’ve got HD; Oh goodness me!
You’re getting paranoia.
Here’s Clozapine to take as well,
The ‘voices’ won’t annoy ya.
You’ve got HD; Oh silly me!
Some drugs aren’t meant together.
I’m sorry dear, too late I fear,
They may affect forever!
The next GreenwichTweetUp is due to be on Thursday 23rd May. The venue is still to be decided as I write but if you search on Twitter under #GreenwichTweetUp full details will be given. I won’t be attending myself. It’s a Thursday and I don’t do Thursday evenings. I’d explain but life’s too short as it is…