well Here Goes ‐ Xadago

Note: haven’t edited the typos at this stage:

Safinamide –

Common side effects of Xadago include:
  • abnormal movements (dyskinesia),
  • falls,
  • nausea,
  • insomnia,
  • dizziness upon standing,
  • anxiety,
  • cough,
  • indigestion,
  • hallucinations

Common Side Effects of Xadago (Safinamide Tablets

Well this could be interesting, and I will definitely be wearing my medicalarm pendant today and not goiñg anywhere. Worse still, the ģuy with a tank full of insecticide on his back has just turned up unnanounced and sprayed the perimeter for cockroaches and ants, before I could race around and shut windows and doors. So now the cockroaches will be tryiñg to take refuge inside just as the forewarned hallucinations kick in! I may be seing cockroaches as big as a horse? I hope I am joking. Since my last dose of Madopar was increased, if I stare at anything, it looks to bè sliding slowly downward.The first couple of times were disconcerting, especially as I was looking at one of my portraits at the time, and it started moving.

Im not happy about taking more meds, but I have stopped taking cholesterol tablets (increased muscle pain) months ago, with docs approval! as my readings werent too bad. I am now off the blood pressure tablets as of 2 weeks ago because my bp was very low. That was normal on Monday at the neurologist, though quute different between arms. Not unusual.

So it is now 45 mins since I took my 7.30 and 8am meds together (including Xadago and Paroxetine together – said ti be toxic mix) because I had finally got to sleep very late due to tearing pain from bursitis and arthritis in my right hip (the pain injection failed after 3 days). There wasnt a position I could get in on my bed that stopped the feeling that my leg was tearing at the ligaments. Finally got to sleep at 2am lying face dowñ and listening to the new meditatioñ tape from the Honest Guys on Youtube. Thank you, Honest Guys! you really help.

“I thought new meds were supposed to make me feel better not worse?” I complaiñed to my neurologist n Monday, but I will try anything that will slow down the sudden deteriiration I had noticed in the past month, especially in my thinking, typing and mobility slowing down again.

The damage to my hip came from pushing myself (I know Karen) to walk down the 20 shallow steps at the dentist using both legs ie fransfering weight from one leg to another while holding on to the railings either side. Such a simple thing but the weight was too much.

Speaking of which, on what I have been eating lately, anyone else would now weigh 8 stone but I am puffed up like a blimp. Each increment of Madopar saw another kilo come to join me. I have cut down on sugar and chocolate and rhat has kept the scales down from 104 kikos, but I have been totally miserable.

How am I doing? I havent corrected my typing, but I havent kept typing multiple letters as I have been doing lately and I seem to be hitting the intended letters on the tablet keyboard. That has been so frustrating lately. My brain that usually feels hot and fuzzy ith lots of cogs whirring in the background doesnt feel as ‘squashed’. That is nice? My body feels like the muscles are giving a sigh, and I had better get up and get showered and dressed. Best undies in case the threatened side effects see me end up in hospital.

Why am I making such a fuss? Well I am that statistic who is allergic to opiates and some anaesthetics (one in 20,000 the anaesthetist told me. I wake up after surgery with my chin black and blue from fighting the tube and the anaesthtic – used to be halothane – though I dont remember thank goodness. The pre-med brings me out in a rash all around the mask and I had ‘the galloping itches for hours after last time. My boys have the same problem with anaesthetics. I guess it comes from having a mixed gene pool.

So here we have it on record. Despite all the previous side effects, going on to Parkinsons medication has pulled me noticably back from the brink. When I returned to live back near my sons and friends in Australia, ⁴ years ago, my friends were shocked they have told me, that I was talking so slowly, my face was no longer animated, and I did everything in slow motion. That all improved once I saw my neurologist who immediately said I had Parkinsonian symptoms but am Parkinsons Plus: Hashimotos (thyroid),macular degeneration, osteo-arthritis especially in my twisting and crumbling spine and fibromyalgia.

So you see, I am doing very well for the state I am in. I am just on the wrong planet! ‘Beam me up, Scottie” (quote from ‘Star Trek movie series)

Nicely blurry selfie, Doris Day style (they filmed her through gauze for a softer look.)

Im Having a Tomato!

And some parsley I dont remember planting but I’ll take it anyway. I had to take the photo so I can actually see my baby tomato and it looks like there will be a few more. I think I have to pinch out some of the blossoms to get a bigger tomato on the other. But I have just had to move it out of full sun against the brick wall as it was badly wilting. It revived instantly after a big drink. It was like magic. Also my strawberry pots are producing one or two strawberries per day so for a reluctant fruit and veg gardener in Australia s that counts as success. I am getting them used to warering every other day because holding the heavy hose pulls my insides and is really painful.

I am looking at whether putting a drip system along the wall would be helpful. Plus it would save water. I have containers to collect rainwater when it rains which is not often enough.

Yesterday was a pleasant day and I was feeling better again though I caused sciatica trying to fix a stuck drawer which my helper Hannah helped me fix this morning.

Yesterday I had a visit from my long-term friend, Janet, and it was nice to have a conversation about all the things we look up on YouTube such as landslides climate change weather happenings and whether these are caused by those planes that are spreading chemicals which I could often see when I lived in the Midlands of England. I forget what it’s called (chemtrails) but they have been messing with the weather and now it’s all going wrong. This sounds crazy but when you look at the earthquakes volcanoes tornadoes sandstorms bushfires wildfires hurricanes and changes in temperature not just in this area but everywhere something is causing it and you rarely see it on the news. Good old YouTube! Of course there is a lot of rubbish on there as well but at least it keeps the mind active.

I still follow Harry and his metal detecting on YouTube as Idetect. He finds ancient Roman coins and takes us into some lovely peaceful countryside. We learn as he learns and lets us stand with him in our wellies, peering into newly-dug holes to see what treasure lies therein. Harry has great potential as a presenter on children’s television as he is quite a special character and although he looks like a little tough guy with all his bodybuilding he is a bit of a softy in the nicest way. He is pretty cool and looks like a tattooed Viking they left behind while burying their treasure!click here to meet Harry. Ive been following for at least 2 years.

Still waiting for a visit from my technician to fix my rollator as promised for today. Very sad that the folding mechanism has failed when it cost such a lot. So that’s me up to date and done quite a lot this morning so nana nap time to recharge the batteries. In good spirits.

My Jimi Hendrix Experience

cjheck out Jimi Hendrix here

Watching a program oñ 60’s musician Jimi Hendrix on SBS and remembering going to his very loud live concert in Chesterfield, UK.

He played his electric guitar with his teeth, behind his head and in ways never seen before. Much of it was wasted because the audience screaming was totally deafening.

Since my Dad was playing his own guitar steel/Hawaiian style across his knees to accompany his favourite country songs at the time Jimi’s innovative guutar playing left me cold. To be honest I thought his performance was stupid, obviously stoned and was glad when all the noise finished!

I was about 17 and pretty naive, worked as a female white Public Servant in a regional UK tax office. Very straight and couldn’t be more opposite than this cool black musician. The whole concert opened my mind to live music, for Jimi was only one act on the bill.

He looked so ill, his dark skin stretched yellow across his cheekbones. I remember that so clearly.

It was a life-changing experience but seeing him now I think what a waste that the drugs ruled him and his performance and what could he have been with that talent and his cool sense of humour.

He died soon after. Drugs related.

Watching the programme and all those obviously stoned people with their jerky movements on lsd, acid, whatever, I think here I am, taking stuff to stop me shaking at the opposite end of the spectrum. Ironically medical marijuana is said to be coming an answer to all mý symptoms. But I still cant play a guitar properly.

He was beautiful, but by the time I saw him he was totally wasted in all ways. I can only play chords A, D and E but I am still here. Ive had my few minutes of fame on tv and radio, but nobody is going to make a tv programme about me, and that is okay.

Hawaiian guitar music still soothes my soul and Jimi Hendrix doing his improvisations still grates on my nerves. A lot of music has filled my life and told my story.

Then there were the Beatles. Yes Ive still got the scrapbook.

Having such a Good Morning.

Having the world’s best milkshake in Coles Shopping Centre, having caught my friendly local taxi down and sorted out my meds with Adam at Blooms Chemist.

From now my tablets will be delivered weekly in a bubble, or Webster pack with each group of tablets ready in itslittle window for each day, morning noon and night. Simples! The pack is easy to see, nd no matter how dopey I am in a morning I simply look for the day (problen – what day is it? Check phone!) Pop blister and tablets into hand then up and attem.

As a pensioner the service is low cost and helps with meds safety.

We used this system for Dad and it was brilliant. My tablets pack arrives at my door weekly and they let me know when I need a new prescription.

Now I am waiting for Janet to meet me for lunch.

The Parkinson’s Disease Clinic

I haven’t talked about my weekly visits to Rankin Park Hospital for assessment and mentoring but I am still feeling the benefit of the course, which was the precursor to the excercise classes I am booked to begin in January. The clinic seems to focus on living with PD, as opposed to dying fròm..and living well.

It is all very positive. Self help with support instead of just drugs and sedation that only benefit the chemical companies. I was amazed what I learned to help offset the vaŕious symptoms, from voice excercises to dance/stretch moves. Actually thè dance moves were from Youtube videos but I learned that the more movement I do, the more my brain works to keep my co-ordination and the better I feel.That is the plan.

At the clinic I was weighed, my prone and upright blood pressure taken each week over

I was passed on from one expert to another. Each made me feel they really cared. My voice and breathing were in need of exercise to keep the strength up. I have to do ‘whoo’ voice sounds, and a rough-sounding’eeeèh’. Loss of voice is a big Parkinsons problem. My neighbour has it and because of my poor hearing we have difficulty having a conversation, so keeping my voice strong is important.

So is balance. Loss of muscle tone and co-ordinatìon can easily lead to falls, which is why the Clinic is focussed on prevention. My chilhood years of skating, acrobatics and dancing have saved me from falls thus far but doing exercises to strengthen the brain/muscle/balance can only help prevent bad falls. My poor vision led to my two bad falls, both in the first place I stayed in after I returned tò Australia. Both resulted in me

I now have gadgets to put on my shoes, pick stuff up, open jars, get out of bed, etc. To be contd

The first thing was the warm receptiom. Really important. I was weighed and, good news, have los weight! Everybody made me feel speciaĺ, which was much needed when Im coping with loss of faculties tha

Helpful Thingys

My young friend, angela, came up with this solution for unscrewing lids of all sizes. It is simply a piece of non-slip backing mat, super cheap and comfortable to hold. Works on all sizes from milk containers to tight jar lids that were really becoming a problem. It is also very flaxible so ciuld also help with handles, etc.

The second very useful thingy is a wooden cooking spatula for applying cream to hard to reach places, such as backs of shoulders or knees, hips etc. The extra reach of the long handle avoids a lot of joint pain and has more grip than a plastic spatula. Can be put in boiking water for cleaning. Used in the kitchen for Chinese cooking but do keep a seperate on in the bathroom!

My latest gizmo comes from Ikea, home of everything wonderful. I got mine through the Occupatioal Therapist at the Parkinsons Clinic who brought some from the Sydney store for us.

It is very long shoe horn, to save bendìng when putting on shoes. It has a curved top which can be used for reaching items under cabinets or fìshing things from backs of cupboards.

It has some rubberized marks along the friont. May help grip fabric to put on trousers. Havent tried that. So three simple items with alternative uses that help make life heaps easier.

And don’t get me started on Blu Tack and Liquid Paper!