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November 2004

Not a good month for me,I have been having some chest problems. Pleurisy type symptoms,sharp pain when breathing in,the doctors aren't sure what's causing it. Could be a lung infection so I'm on antibiotics at the moment,at the time of writing it's quite a lot better. Also,I've been feeling very tired,don't know if this is due to chest problems or MND.

I have now started going for day care,one day a week,at the John Eastwood Hospice, which is very close to where we live. There I have access to doctors,nurses,o/t's,physio, alternative therapies(aromatherapy,massage,reiki) and,oh yes,an online computer. :-)

Still going to physio once a week for range of movement and stretching excercises to try prevent me from stiffening up too much.

I still spend much of my time on the internet and working on this website.There have been some exciting changes happening at the Build-UK site thanks to Pete's son,Matt.

Mentally,I have been a bit down,probably due to being ill.My attitude seems to have been changing from positive to negative and back again daily.It's so hard to stay positive all the time with this disease but I do try to.

Even though things seem hopeless,I still have hope.You never know what the future may hold,I may remain stable for years,a treatment may be discovered that halts progression or even a cure. Of course,the opposite may happen but I try not to dwell on that thought too much.

My advice to other PALS(Persons with ALS) would be to remain calm,avoid stress,keep a positive attitude and have hope. (Easier said than done,I know).

Bloody hell,it's nearly Christmas again. Have a good one!

December 2004

A HAPPY AND PEACEFUL NEW YEAR TO YOU ALL!

We had a quiet but enjoyable Christmas.We were meant to go to Mums on christmas day with the rest of the family,but the doctor advised us not to go due to my chest problems.

So we stayed at home and had christmas dinner delivered by Marshall's Christmas Day Take-away! Then all my family came down in the evening,bringing more supplies with them.

Thanks guys.

My chest problems seem to have cleared up now,I have been keeping a log of my oxygen saturation using a pulse oximeter.My O2 readings were 88 to 92% SpO2,then I decided to stop taking Riluzole and my O2 sats are now between 90 and 94%. Draw your own conclusions from that? I am still not happy with my O2 sats though,anything below 95% is cause for concern according to my research.

I am feeling much more positive at the moment and ready to face this years challenges.

Mum and my cousin Andrew spent new years eve and new years day with us at our house,

My big party days are over,not that we got invited to any,lol.

Finally, at the time of writing,the news is full of the eartquake and tsunamis in S.E. Asia.

Over 120,000 dead and whole islands and towns wiped out is incomprehensible.

My thoughts and prayers are with all those affected by this terrible disaster.

All my problems pale into insignificance when compared to the suffering of these people.