Chapter 236 - 20th Anniversary

She wasn't impressed when I wished her "Happy Anniversary" as we woke this morning. She had forgotten that about now, at about 11AM on 13th September 1991, she was being told by a neurologist that she had Parkinsons Disease and to expect that she may be a vegetable within a few years. Well, she is far from being a vegetable. And she has not been, as a once close friend in a far away place said to me , "in denial" about her problems, or as a neurologist on the far side of the country once said to her "Stop shopping around for a neurologist; get on with your life", or as an ex-nurse said to me a few years ago when she was having panic attacks & dyskinesias from over medication "It's all in her mind", or as others have commented "I saw her walking well the other day; she is obviously improving" or "Is her new medication curing her?". NO to all of them.

A few weeks ago I joined our local Men's Shed so I can get out to associate with "ordinary blokes" and partly to encourage her to do so as well. I find that few of the blokes are the type I normally mix with. Then I called into the nearby nursing home to enquire about their day respite programme. When I came home & told her she wasn't too impressed but agreed to go with me one morning to talk with the co-ordinator. Last Friday she attended the respite group for the day while I went to the Men's Shed. Neither of us are enthused. However, we are prepared to attend our respective groups for the time being.

At the suggestion of the local GP she composed a letter to the neurologist in Hot Air City. In part, her words are

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Following my appointment with you on 18 August 2011 I began taking Stalevo 100/25/200 x3, Sifrol 1mg x3 and Propranolol 40mg x5 on Monday 29^th August.

I also needed to use the Madopar Rapid 50mg/12.5mg 3 X per day (But could have done with more) as I was not getting more than ½ hour of “On Time” and became slower and slower as the week wore on to the point that by Friday I began freezing when my feet wouldn't move at all. [Himself] frequently had to rescue me from the toilet and also assist me standing up and getting out of bed. I needed to go to the toilet 5-6 times per night and things were becoming dangerous because [Himself] was tired from being woken so many times.

So on Saturday 3^rd September I increased the dosage of the Stalevo 200/50/200 x3 day. I still had Stalevo 200/50/200, left from an earlier prescription, after Sinemet CR became available again last year. In about 2 hours I was able to move reasonably well.

Since then I have taken this dose of Stalevo X 3, Sifrol 1mg x3 and Propranolol 40mg x5 per day and I have not needed the Madopar Rapid. I have had a reasonable week on this dose but in addition I am taking a Sinemet CR at midnight to get me through the night.

I was able to get an appointment with Dr [GP] on Wednesday 7^th September to discuss other matters and I told him what changes I had made to my PD medications. He suggested that I advise you about those changes.

I have noticed during the past week or so that I get a tingling sensation over the top of my head and occasionally I get a sharp stabbing pain on the left side/ back of my head. This lasts for about 5 minutes and then goes but the area seems sore to touch for a while.

I have noticed a few times that a strange sensation sweeps over me like I am disconnected from reality and I feel safer sitting down. However, yesterday I had a fall when I stumbled against a box on the floor of my sewing room. Then last night I rose to go to the toilet when for no apparent reason I just fell over. {Himself] saw me fall but was unable to catch me. He commented that I was able to rise without any assistance almost as quickly as I fell. There was no sense of loss of balance or trying to save myself. I just fell and then I got up easily by myself.

I seem to remember that when I was on Comtan and Seroquel in 2005 while I was in [the] Rehabilitation Centre that one day I came out of the toilet and didn't know where I was and my head felt light and empty.

That feeling lasted for a couple of days. After I came home from [that place] I was in hospital a couple of times with panic attacks. Dr  (Specialist Consultant) at [local] Base [hospital] said that I was over-medicated and took me off all medication except Sinemet CR. I see Dr  (Specialist Consultant) for a general check-up several times each year. During that time in 2005 I just fell over (like I did last night) in the bathroom and pulled a tendon in my left ankle.

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The memory of seeing her fall in the bedroom the other night is vivid. I was in my bed, resting on my elbow, watching her get out of her bed and go towards the commode, when she just topple forward, collapsing into a ball as she did so and colliding with the commode which fell apart with a crash. Fortunately it was empty. By the time I yelled "Shit!" very loudly, threw bed clothes aside and reached her, she was almost standing on her feet again. I really didn't need to assist her. I re-assembled the plastic commode bits back onto the metal frame, she did what she rose for then we both got back into bed.

The day before I found her ratting around in her sewing room after having withdrawn some boxes from a cupboard. Perhaps I distracted her. She bumped her foot on a box & toppled backwards onto the floor. I had to use the wide lifting belt to help her up. It was difficult. Once seated again she realised that the sharp points  of the small, very sharp, snipping scissors she had held in her right hand had scraped her left wrist. A band aid was needed.

She still has a nitrite problem with her urine. When I raised this when we saw the GP last week he said not to worry about that while there are no symptoms. This afternoon she says the Caring Physician for a check-up so I will raise it with him. My understanding is there are bacteria which process nitrates in the urine into nitrites. That tells me she still has a UTI without the normal physical symptoms.

Now that she is taking meds at 0700, 1100, 1500 & 1900 we are having a larger meal at lunch time so I must be off & cook some fish. We are tending to have more "healthy" frozen dinners lately.

I don't think we will bother with a bottle of champers with this lunch, for whatever anniversary this may be.

Chapter 235 - Dog Days

She is much happier in our "enlarged bedroom", now that the chest of drawers is out in the living area & my bed pushed up hard against the wall. This morning after her 7AM meds (new regime) she was sitting on the side of her bed. poncho around her shoulders keeping warm, feet on a firm pillow on the floor (doing so stops her legs shaking) her trolley pulled up close on which was resting her Kobo reader on which she is reading "The Help". She queried me what was the difference between "Negro & nigra" - I did not know but it was obvious from the text. I haven't read that book yet and the movie has just begun at the local theatre. I bought her that book after she finished "Sunshine and Oranges" which, although markedly different from her usual reading, she enjoyed. Thus my choice of "The Help".

A week ago she began her new meds regime once the chemist sorted out what seemed to be an error on the part of the person that initially attempted to supply the lowest dose Stalevo. So she began on Monday last with Stalevo, Sifrol & Deralin at 7AM, 11AM & 3PM. She had checked with the neurologist on the previous Friday she she was intended to take the Sifol & Deralin as well. The intention was that she "top up" with Madopar Rapid when she encountered an emergency. She is hesitant to do that because she is scared of over-medicating. I don't think she took any Madopar Rapid at all on the Monday; at least I didn't note it.

On the Tuesday she was feeling cold, periods when she was unable to move, lots of tremors, very wobbly and she ventured to top-up with M Rapid. By Wednesday I thought she had adapted to the new regime with several M. Rapid top-ups. Thursday was a horror show, she froze on the loo, needing her walker (which doubles as a rudimentary wheel chair) to sit on & be wheeled out to her favourite chair. At 10PM she needed to be wheeled to bed & onto the commode. All this even with a few M. Rapid top-ups.

Friday was not too bad in the morning, so I risked popping over to the Men's shed (I recently joined) & visiting the nearby nursing home to query day respite arrangements. In her cornucopia of Parky meds she had a bottle of Stalevo 200/50/200 left over from a previous neurologist's attempt to stabilise her symptoms so she decided to substitute those for the smaller dose. She says it is not a good idea to simply take double the lower dose Stalevo to achieve the same effect because that results in taking too much of the Comtan component. So the remainder of Friday was good, she was able to get out of bed for the commode by herself and had better agility. I had retrieved the wide blue padded band with handles to aid in lifting her; even so, my back has been twinging. Yesterday, Saturday, we attended a 25th wedding anniversary for friends at our local hall and she did well. Last night I helped her up once.

I have come to realise why, when in an immobile stage, she becomes terrified of over-balancing when I attempt to lift, raise, position her to be able to use her walker or sit on the loo or commode. Her feet are stuck to the floor and any slight movement above her hips begins to send signals that she is off-balance for which her brain is unable to make corrections to maintain equilibrium. So when I attempt to position her, her senses tell her that I am causing her to fall. She whimpers in fear. If she can get her legs to move when she is in that condition she shuffles, no more that half a foot length per step, feet flat on the floor.

This morning she moves well, showered & dressed before I realised she was up & about; I had left her reading while seated on the side of the bed. On Friday morning before our cleaner arrived I swapped her special orthopaedic mattress with the one on the bed. I am getting too old to move mattresses to & from our attic space. I await her saying that the mattress has her sinking into a hole once again. Maybe we can simply swap ourselves between the two beds to temporarily overcome the difficulty when it arrises again.

She has been quite negative toward the day respite issue. However, after I spoke to to resposible person over there on Friday and gave her an idea what was involved she sounded more at ease with the idea. Perhaps on Monday afternoon after physio we may pop in there.

I tested her urine a week ago - the dip stick still shows a colour change for nitites. She has no other symptoms of UTI so I will not have her visit the doctor again. Worrisome though.

Today the kids are meeting us at the club, probably because it's Father's Day and next week my birthday. A couple of days after that her 20th anniversary of her PD diagnosis. Do you think we should celebrate wildly??