Saturday, 13 October 2018

A better outlook!!

SPRING is springing and I am conscious of time running out.  Was 74 years old this week and one starts to contemplate what may be in store in the future! But while doing that I have made a few resolutions to mark reaching this point in my life ....

One is that I have stopped all medications except for my small dose of Amitriptyline at night .... and I do feel much better for it! It may be my imagination or a temporary phase starting up but I don't really believe it. I think that it was the Carbamazepine to blame for my worsening dyskinesia - I have been taking it for over six months this time ... this because I was terrified of the neuralgia starting up again and so remained on it for far too long. My leg, arm and hand are so much better now that I have been off these tabs for 3 weeks.
RESOLUTION ONE - to take as few regular medications as possible.

Another is that I am going to make a real effort to meet up with friends and family more often than I have been doing lately. I do admit to letting things slide, mainly due to feeling so tired, sick and wobbly.
RESOLUTION TWO - see friends and family regularly, or if this is not possible to make contact by text or e-mail at least every week.

RESOLUTION THREE - Make a conscious effort to 'smell the roses' and to take more notice of our beautiful surroundings. We are so very lucky to live in such a lovely area.

Time slips away all too easily and disappears unmarked. By the time one realises it is then too late. But I am feeling more positive than I have for a very long time so I hope that it lasts!

Wednesday, 3 October 2018

Treatment worse than the disease!

Further to my foray into trialling medication for possible Parkinson's Disease I have to admit to stopping the Sinemet 200mg daily after one week on 17th September. This was because of the extreme nausea and dizziness that ensued within 20 minutes of taking the dose, lasting 2 - 3 hours. I honestly could not perceive any improvement in any case so must assume that:

a) I might need to take a larger dose which I am not prepared to do 😒 

b) my problems are not due to Parkinson's 😕

I began wondering if the dyskinesia might be related to having been on carbamazepine (Tegretol), taken to prevent the pain of Trigeminal Neuralgia, for such a long time ... at least 6 months (dyskinesia can be a side effect). The long period of time taking it was because each time I tried come off it the pain started up again! However, I am pleased to say that I stopped Tegretol on 23 September and have had no further TN attacks yet ...TOUCH WOOD!

So here is where things stand currently:

Left leg and arm feel a bit wonky and jerky on some movements. Definite problems with fine movement of left hand. Right hand/wrist a bit stiff.
Dizzy after bending over.
Balance not wonderful.
Headache just about permanent, but worse at night.

Nausea much of the day, worse at night.

Neck stiff and painful at times. 
Very difficult to sleep despite Amitriptylline 25 mg at night. 
Plus usual suspects: tinnitus, double vision, choking, dribbling, lousy memory.

It is all such a damn nuisance AND SUCH A BORE. Which makes me reluctant to write 
this boring, BORING, oh so BLOODY BORING blog 

But I really do try to count my blessings and am really enjoying our new house and environs (it is SEVEN MONTHS already since the move)! 😄

And, after all, it is not any-old-body who gets occasional visits from a pair of peacocks!

Thursday, 6 September 2018

Take it, or Leave it? - a bit of a dilemma

Following on from my "diagnosis" of early Parkinson's disease I was started on a very small dose of Sinemet, - half a tablet (whole tablet strength 100mg/12.5mg). I was not sure whether this regime was making any difference as my symptoms fluctuate so much, but overall I felt that there did not seem to be any improvement.

After about 2 weeks I went back to the doctor and began a trial of one whole tablet daily. Other than some nausea immediately after taking a tablet I could not really detect any effect. Over a further week or so the jerking of my left leg did not happen as often, but then it doesn't happen regularly anyway. Other than that there was definitely no improvement in the continuous stiff feeling and loss of fine movement in my left arm and hand.

Following further discussion an increased dose (200mg/25mg) was agreed but I tried this only once and felt so nauseated and dizzy that I had to lay down for most of the day afterwards! In fact I was so put off by the whole business that I stopped taking it altogether.

After several days of no Sinemet at all I again saw my doctor and she suggested I remain off it for a further couple of weeks and then retry with the 200mg/25mg dose. The object of this is to make it like a trial and I must note my symptoms on a daily basis, recording any changes so that we will be able to see whether Sinemet makes any difference or not.  Of course I am quite willing to do this but I do rather dread doing anything that might make my episodes of nausea worse!

Although I was aware it's a question of getting the dose right for Parkinson's sufferers I was definitely surprised to learn that Levodopa works very quickly, * although the duration of any benefit can vary quite a bit. So my idea that I would need to take it for several days or even weeks before any improvement was possible was quite wrong!!  Another issue is that the beneficial effects of taking levodopa are known to decrease after a few years so maybe it would be more sensible to wait until these Parkinson-like symptoms of mine become a bit worse?

* When levodopa is taken 30-60 minutes before a meal, many people notice an improvement beginning after about 30 minutes. Most people with Parkinson's disease note that benefit of levodopa lasts about 3-5 hours, but the duration of benefit may range from as long as a day to as short as an hour.

Wednesday, 1 August 2018


Saw my lovely GP yesterday and discussed some ongoing problems + some new difficulties using left hand and forearm. Some of these might be symptoms of Parkinsons Disease as I wrote last time. 

  • Shaky fingers, hands, lips, or limbs at rest
  • Slurred speech that’s hard for others to understand
  • Numb or weak limbs that make your walk unsteadily
  • Loss of muscle control that often affects one side of your body at first, then later both
  • Spastic limb movements that are hard to control
  • Loss of bladder or bowel control
  • Poor balance

My doctor repeated the neuro examination tests that I have had before and then said that her findings appear to agree with those of the neurologist whom I saw earlier this year. So she has started me on a small dose of Sinemet as this may help if it is actually early Parkinson's, but we will need to wait a week or two in order for any improvement to become apparent.

Common Drugs for Parkinson's Disease

Levodopa and carbidopa (Sinemet). Levodopa (also called L-dopa) is the most commonly prescribed medicine for Parkinson’s. It’s also the best at controlling the symptoms of the condition, particularly slow movements and stiff, rigid body parts.
Levodopa works when your brain cells change it into dopamine. That’s a chemical the brain uses to send signals that help you move your body. People with Parkinson’s don’t have enough dopamine in their brains to control their movements.
Sinemet is a mix of levodopa and another drug called carbidopa. Carbidopa makes the levodopa work better, so you can take less of it. That prevents many common side effects of levodopa, such as nausea, vomiting, and irregular heart rhythms.
Sinemet has the fewest short-term side effects, compared with other Parkinson’s medications. But it does raise your odds for some long-term problems, such as involuntary movements.

It will be interesting to see whether or not Sinemet has any effect .... if it doesn't then it may be that there is something else going on in this stupid brain of mine!

Tuesday, 20 March 2018

I'm refusing the diagnosis ...... but then what would I know?

Had my annual check up with the Neurologist a couple of weeks ago. Apart from him being quite young (and definitely charming) I came away with the usual feelings of frustration and, dare I say it, anger. These feelings were brought on by the fact that he still has the conviction that I have "early" Parkinson's Disease. Of the early signs listed in the illustration above he only found some slight resistance in my wrist joints during one of his tests ... hardly surprising really considering both wrists have sustained very bad breaks in the recent past which has left me with some residual stiffness. I have no signs of Bradykinesia, no tremors at rest, no sign of decreased facial expression!

As far as the progressive symptoms listed in the second illustration I will admit to suffering from several in the list!!! ..... fatigue, swallowing problems and memory loss. And I do get strange jerky tremors in my legs sometimes when trying to slip my feet into my shoes while standing, or when putting trousers on! I also continue to suffer from nausea, loss of balance, left-sided facial pain, numbness around left cheek and side of my mouth, irritation in left eye and double vision ... but I have had these symptoms for at least 10 years!

I asked whether my 'symptoms' could be due to the meningioma, or maybe a result of radiation treatment, but he was adamant that this was unlikely because of where my M is actually sited. I really cannot understand this because, although it is described as Left Petro-Clival, the MRI reports routinely state that it is lying against the PONS:

The pons contains nuclei that relay signals from the forebrain to the cerebellum, along with nuclei that deal primarily with sleep, respiration, swallowing, bladder control, hearing, equilibrium, taste, eye movement, facial expressions, facial sensation, and posture. 

Suffice it to say that I am not convinced that I have early Parkinsons, especially as the literature makes clear that diagnosis of the disease is not in any way simple, especially in the early stages. Other conditions, such as brain tumour, can indeed produce similar symptoms I am hanging on to THAT for the time being at least! Having a couple of Ms is quite enough to deal with thanks!

Sunday, 7 January 2018

Another year, a new adventure ..........

I have not been very good at keeping up with this blog and there are several reasons for this, both good and bad! On the bad side I was pretty banged up from that fall in February and it took several months to get over it physically, while the mental side of things have not quite come right yet .... I am still quite nervous when walking outside and find that I easily lose my balance. Also there has been no improvement in the old problems of headaches, poor sleep, memory loss, etc, which is very depressing.

But on the good side I have found a new interest in my poetry writing and seem to be doing OK with it, as several poems have been published in various journals and books. Maybe I will have the nerve and energy to publish a little book of my own one day!

Also on the good side is that I am now back to playing bowls again which is something I despaired of initially after the fractured right wrist! I attempted to play using my left hand but it is remarkably difficult as it means relearning everything including stance, while trying to re-think your shots to suit bowling from the opposite side! However, after 8 months I was able to hold a bowl with my right hand again although I have had to change bowl size to a size Zero. No matter just as long as I can play once more!

Another good thing has been that we have managed to find a smaller house on flat ground, and with no stairs, and is not quite finished being built yet. It is in a nice village closer to the city and nearer to both my daughters. Happily we found a buyer for this one almost immediately. This is a great relief as we have been searching for quite a long time, although it is particularly hard on hubby as he does a lot for the local golf club and will miss his mates there. However, there are several golf clubs near to the new house which is good, and even a bowling club in the same road! We shall miss the sound and sight of the sea but, other than our 12 years here at the seaside, we have always lived in the country so I am sure that we will enjoy our new life. Another adventure begins!