Chapter 173 - Approaching the Future after 50 Years

Last Saturday, August 22nd, we celebrated the first time we went out together in 1959 by spending 3 nights in Hot Air City. We visited several important sites and walked & spent money in several shopping centres. When she searched for a suitable motel she had difficulty finding one that had appropriate disabled facilities. Surely this country could establish suitable standards? Many motels only offer showers over baths and seem proud that their doorways, car parks, restaurants etc. are wheel chair friendly. Although our ground floor room had a queen sized bed and 2 bunks, the bathroom was satisfactory. Since her special satin sheet was made for a single bed, she opted for the lower bunk. So on Saturday morning she had lower back twinges. We resolved the problem on the next two nights by tucking one end of her satin sheet on one side of the queen size and I slept on the other end of it to keep it in place. No more back problems. Of course, 50 years ago when she was Sweet 16 there was no thought of sharing a bed! All the places we visited had plenty of places for her to rest and lifts for her to avoid stairs. She walked quite well while out & about for 4 or 5 hours each day without the aid of her walker. We blamed the coffee shops and the restaurant meals at the motel for adding a few kilos to our bulk. We did not bother to take Wii Fit with us assuming the amount of walking was sufficient exercise- obviously not.

At home since Monday afternoon she has been busy making small embroidered Xmas things. And back on Wii Fit. The tingling in her finger tips only occasionally happens now. Her toe has healed, giving her no problems during last weekend. A few minutes ago I took more photos of the toe because the dark mark is still there, perhaps grown or moved a little closer to the tip. I would have expected the mark to have been removed. We will keep monitoring.

Chapter 172 - A Spot of Bother

Just that. A bother. On Monday the nail on the first toe of her right foot was removed under local anaesthetic. She had taken her meds at 11:30 and fortunately kick in had occurred by 12:30 when she entered the Procedures Room at the surgery. As an additional aid, she took her MP3 player to listen to the relaxation therapy which we bought from Belleruth Naparstek (http://www.healthjourneys.com/ a plug for something that worked for this PD patient) quite some time ago and hasn't been used in ever so long since she was able to relax and sleep soundly without help. She said later that she didn't quite go to sleep while her toe nail was removed. Of course, she well & truly felt the injection of the local. The surgeon came out to the waiting room to say the job had gone well. I asked "How were the wobbles?" "No problem at all" he replied. He had threatened to have her taken up to the hospital if the leg had shaken too much. So with her bandaged foot in a scuff a nurse took her in a wheel chair to our vehicle parked in the Disabled Parking slot at the front door That disabled parking sticker on the windscreen comes in useful at times like this. Later that day she needed to adjust her meds timings somewhat. By the time she returned on Tuesday to have the dressings changed her toe was throbbing a little due to the very tight bandaging. Back again for a dressing change on Thursday just after the pathology report had arrived. The surgeon came out to the waiting room to give me the "all clear" and almost apologised for having to do the job. Much better to be assured that it was not another melanoma.

Yesterday she said that her fingers had stopped tingling. So was that due to Lipitor? I will suggest she begin taking Lipitor again to complete the experiment. Of course, since last Sunday she limited her exercises in the Wii Fit programme because of the toe job, which is unfortunate since the reports suggest there is a relationship between vigorous exercise and the Lipitor effects. On Thursday we demonstrated the Wii Fit to our PD Group. Her fingers tingle a little this morning.

And yesterday evening we began our Progression 50 short years ago. We were both dis-interested participants in attending a Baptist Youth Fellowship meeting in the city on a Saturday night. In those times, BYF was a church socially acceptable place for testosterone primed youths to meet attractive young things. She was induced to attend because her younger sister wished to meet her potential boyfriend. The son of my boarding house lady had told me that it would be to my benefit to attend BYF; I had never been before, being new in church circles. Although he had other plans in mind; not as things turned out. She had had a bad hair day, came stomping down the ramp at the railway station (none of us had cars in those days) hair flying in the breeze, her dress spread like an open umbrella, damp rope petticoats beneath (which had not dried completely; any female younger than 60 today has no knowledge of such things). I must have been smitten because without hesitation I asked to sit next to her in church on Sunday morning, just 50 years ago today. Those were the days when our lives were fresh & exciting yet almost forgotten today only remembered in fuzzy snatches.

Chapter 171 - Another Trial

She had been complaining of increased tingling & burning in her fingertips. She came across a reference that Vitamin B6 in daily doses greater than 30mg was detrimental to health. I can't remember the effect. Is this the vitamin that caused the death of Antarctic explorers after eating the liver of dogs? I can't remember. Anyway, since she has been taking 100mg each day, whereas the recommended daily dose was a maximum of 30mg, she decided to stop some weeks ago, but I don't think there was any reduction in finger tip tingling.

At the beginning of this month I saw a reference in the CARE group (Care Givers Are Really Essential, a PD group) about the relationship between statins (read Lipitor) and amyotrophic lateral sclerosis (ALS) and neural degeneration. See http://alsbytes.com/?p=185 . One of the comments that caused her to immediately stop taking 20mg of Lipitor (her GP had originally prescribed 40mg but she decided off her own bat to halve the dose) was as follows

"A Danish study reports that some people who took statin drugs to lower cholesterol developed a type of nerve damage called polyneuropathy. Polyneuropathy is characterized by tingling, numbness and burning pain "

Now those words "tingling, numbness and burning pain" are exactly how she described the sensations in her finger tips, long before I saw that reference. We had never heard of ALS. We have not told the GP about this experiment to not take Lipitor. After reading the article she realised that the sensations in her finger tips was greater after exercise, such as the Wii Fit routines, especially the stepping exercise that she performs for about 20 minutes each evening. I just checked with her that last night tingling began in her fingertips as she concluded the stepping although now, this morning, there is none at all. I asked "A week ago was the tingling there all day?" She simply replied "Yes".

I just checked back to see whether I had written about about her fingertips in an earlier post because I could not remember. Holy Excrement! Have a look at the last par for my June 21st '09 entry. And honestly, I have not edited that entry!! There is some worth after all in maintaining a diary of events and symptoms. The effects of the statin "poisoning"(my word), if that is what this problem of hers is, is aggravated by exercise.

As mentioned previously, we have been concerned with a blackish stain under one side of the nail of the toe adjacent to the big toe on her right foot. The GP inspected it. he said his "Mole Mate" skin cancer detector was ineffective checking beneath finger & toe nails, so referred her to the surgeon who took off the melanoma on her left leg. So on Friday last we saw the surgeon. He was impressed with the macro close-up photos I had taken each month since May and asked to keep them in her file. After a rather cursory inspection of the object causing concern he said he wanted her at the hospital where he would remove the nail under general anaesthetic for biopsy. He remembered her PD symptoms from last time, and her right leg produces much more uncontrollable tremors than the left. After I said that general anaesthetic knocks the stuffing out of her, her conceded he will attempt to do the job under a local "out the back" (referring to the day surgery rooms) on the proviso that if her leg became uncontrollable then he would have her taken up to the hospital to do the job under a general. He then scheduled the job for 12:30 tomorrow, Monday. I am unsure whether he thinks the matter is urgent or just that he can fit it into his schedule. Just in case she ends up at the hospital, apart from a light breakfast, she is to fast, although take her meds at the usual times. She has decided to take her noon meds at 11:30 so that kick-in occurs prior to the job starting. I fear there is little hope of that happening because the tension and stress will amplify her PD symptoms.

At lunch time today she will listen to her MP3 player (once used to help her sleep, no longer needed for that) to see whether calming music aids in minimising her leg tremors. I really hope the surgeon, who really enjoys his job, can be extra quick tomorrow. After she asked him what will be done if the biopsy indicates melanoma he just said "I will amputate the toe."