Chapter 477 - Bad End to a Bad Week

At 0630 on Saturday I replaced the Duodopa cassette, changed the setting from 2.2 to 5.5 mL, initiated the Morning Dose of 6.0 mL, flushed the side port, retaped the tube to her tummy and pulled the tape in and out a few times, then gave her Ganfort and Simbrinza eye drops. She quickly returned to sleep after all this activity. She was asleep at 0730, laying on her back as usual, was hard to wake to begin the day. I had difficulty sitting her upright on the side of the bed in preparation to having her stand on the Sara Stedy; she said her right arm was tingling, "not there", then she said she was unable to "find" her feet. She had difficulty grasping the rail on the Sara Stedy as I attempted to lift her into a standing position. Five minutes later seated on the loo her right arm seemed slack, still tingling. While she remained on the loo I gave her some water to drink; she looked "dippy", the right arm was not tingling but felt "dead" at 0745. Moved her onto the commode at 0750 when she said the middle 3 fingers on her right hand were "burning" and felt "thick". Her feet were just not there, there was feeling only down to her knees. Becoming alarmed, I asked her to grin/smile and the grimace she made was balanced on her face, she was able to raise both arms in the air, she was able to touch her nose with each index finger but the right arm was tingling and burning whereas the left felt "normal". As the Wild Dog carer came in the front door at 0800 I was checking her blood pressure at 116/69 pulse 66, a second reading was almost the same. Her right hand fingers still felt "thick". I had the carer shower and dress her. The middle two fingers of her right hand were still "thick" as she was being dressed. I pushed our alarm button at about 0815, described the symptoms to the operator and asked for an ambulance to be sent. About 0820 the ambulance service rang to ask about the situation while an ambulance arrived. She was now sitting in her wheel chair. The ambulance officers asked appropriate questions; had her perform a smile, raising her arms in the air, strength of grip by each hand, then brought a trolley into the house, lifted her onto it and took her to the hospital.

After packing a small bag with necessities, assisted by the carer, I locked the house and at the hospital by 0900. I waited for 2 hours before I was called into Emergency, to learn she had had a number of scans and blood tests. Something had gone amiss with the cannula, leaving large blood stains on the bed linen. About 1130 she was given 300 mg of Aspirin. A doctor gave me a referral for our GP and described the tests conducted showed no brain damage, he assumed she had suffered a TIA because the symptoms experienced had rapidly subsided and any evidence of a TIA may not be immediately apparent.

So at 1245 i wheeled her in her wheel chair out to the car and home. I rang Wild Dog to say she was home. Since she behaviour seemed normal, I took her with me down to the chemist for the type of aspirin, Cartia, and restock Simbrinza eye drops. She had a milkshake. Back home, the normal evening routine was followed and by 2000 she was asleep in bed.

Beginning tomorrow, Monday, a busy week awaits us.

I can only wonder: a TIA or a weird PD symptom?

Chapter 476 - Clarity of Mind

A few days ago at the dementia carers' group I attend I asked too many questions about all the care groups I am now aware of, and when I asked whether I could hand out some brochures for the care group in Hot Air City (part of its bailiwick is our town) that has funded me with a respite budget I was told that if I really wished to, I could. Confused, I pushed the brochures back into my bag.

Recently a friend suggested I contact a lady, at another group, after he had spoken to her about my situation. It seems she is involved with schizophrenia problems, yet spoke to me for at least an hour on the phone, an entirely unsatisfactory way to discuss carer support problems because my issues seemed to be asked about in reverse order. She seemed surprised toward the end of our conversation that we had a Level 4 Support Package. She mentioned another care organisation that she indicated had set up business in a recently vacated bank building. I cased the place, did not enter, did not see an appropriate title on the door. So I researched the organisation on line and found that it had been established in 2007 (I think), had a management structure in place of individuals in a number of states and the founder was contactable via mobile phone and a PO Box number in  a suburb of Batman City down south. There seemed to be no branch offices. On researching the founder I learned he had failed to be elected in several state elections, having run on a ticket that sounded very much like the aspirations of the care organisation he has established; I could but wonder whether the care organisation was a way of establishing a political base.

Then today we attended a Xmas lunch of our local PD Support Group. The CEO of the state organisation attended and said a few "rally round the flag boys" words, reflecting the achievements attained by the restructured management. Some weeks ago I drafted but did not send an email commenting on the organisation sending fund raising requests to PD sufferers to support the cause financially. Another arrived in the post a few days ago. Fatigued and hot (the air conditioning in the room was malfunctioning) I asked the lady why the organisation did not better direct their fund raising junk mail. The main point of her reply was that I should bin it if I didn't like it. Later at home I sent an email to the organisation, CC'd our local organiser, stating my comments more clearly. Read it below:

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I am the one who at  today's  PD Group Xmas lunch  made negative comments about PXXX's fund raising blurb that was included with the Annual Report, as well as in a separate mailing a few days ago.

In recent years I have found the tone of fund raising newsletters and pamphlets more and more aggressive and guilt producing. Parkinsons XXX is no exception. Perhaps the same marketing agencies prepare the copy. So easy these days to make newsletters more personalised by liberally scattering the recipient's name throughout the brochure in computer generated  handwritten comments. More difficult for an organisation to tailor the message for the recipient's situation, such as  PD inflicted, carer, family member, or the general masses.

My wife Xxx has borne the continuing devastation of PD for 26 years of which the last few have been tolerated from a wheel chair. We have supported various organisations, including various PD ones, over the years. Could we have given more support to any of them? Yes, I'm sure we could have.

Your suggestion that I can always throw such unsolicited fund raising brochures in the bin is quite correct; I usually do. But surely that misses the point?

Did you hear several quiet comments made at the table after I spoke; saying "I agree with you" ? At least three, a sizeable proportion in such a small gathering. Unsolicited market research?

Now as I scribble some credit card numbers in Xxx's name on the donation slip at the bottom of the brochure I am bothered that I must expose my credit card details once again. Making payments by bank transfer or by PayPal is so much more convenient, and safer, for me.

I am thankful for the pre-paid reply envelope, but it's hardly 21st century technology.
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I just noticed a typo in the above, now corrected, but not in the sent email. Woe is me!

Anyway, the acts of offending people this week have brought my mind out from beneath a fog. I will forget about organising an appointment with a shrink person; they can only comment about her thoughts and behaviour; they can't give her treatment to "improve" her. I need to extend the scope of my care to cope with her idiosyncrasies rather than condemn them; to tolerate her activities unless they become harmful. What the heck if she pulls labels, ties and stuff off her clothes while seated on the toilet (we can buy more clothes rather than patch the holes); what the heck when she continues to re-arrange the contents of the fridge and cupboards; what the heck when she attempts to roll up half full (not half empty!) tubes of gel or ointment and hold the rolls in place with rubber bands (have you noticed or care that modern plastic tubes refuse to remain rolled up; unlike soft metal tubes of yesteryear); what the heck if she ...................

I hope my carefree feeling extends for at least a few days, perhaps into the new year, without needing to upset more people.

Chapter 475 - How Does One Get Out of a Bog?

I panicked this morning when I was unable to access this blog; or rather the Google Blogger application on this account. Some blind footwork got it back. Time to print a hard copy of this year's posts as well as a PDF file for posterity.

At our last visit on 30th November, our GP gave a referral to clinical psychologist P. A mobile phone number was the only contact to him, I took a week for me to attempt to contact him twice and he called back this morning, saying he is booked up until beyond mid January. He gave me another contact number to a lady who said she was similarly booked up, asking for my number should a vacancy occur. I'm thinking of contacting the coordinator of the care group I attend. However, she has not expressed concerns about getting her ideas across to others lately.

The abdominal Xray requested by the West Beer PD Clinic neuro showed "heavy faecal loading of the large bowel". Before posting the image to West Beer, I showed it to our GP who was more interested in the damage to her spinal lumbar region than the faecal loading. About the latter he suggested giving her three teaspoons of Benefiber of an evening as well as at breakfast. He also said for her to take a Coloxyl with Senna tablet each evening. In the week or so since the introduction of these changes, I suspect her bowel motions have been less successful and she seems to be spending longer on the loo. Beginning today, I'm having her do everything on the commode so I can take a photo of the results. So far today there has only been a peanut sized object produced while she exercised with the pedals while seated on the commode.

Most days she wears the FitBit on her right leg. I like to think that Duodopa bolus doses of 2mL at 1200, 1400 and 1600 each day may reduce her afternoon dyskinesias and stiffness.

West Beer also wanted her to have a blood test. Our GP found all the parameters within the acceptable limits.

About the phlegm that occurs, she obligingly produced a tissue filled sample while in the GP's room, and although she did not do it on purpose, I showed him the contents of the tissue. He said the matter did not look infected and suggested she take one Claratyne tablet each evening; since then she has had to spit into a tissue once; this morning.

In my last post I omitted to mention that the eye specialist found her eye pressures satisfactory at 14 and 16 (well, I think that is what he said) and for her to return for a check-up in 12 months time.

Recently she went through a phase of using the hand held Vax cleaner, bought to help pick up bits of chopped fabric and thread tracked all over the house out of her sewing room and of the kitchen table. Yet she has not been "modifying" or "correcting" bought clothing for several weeks; those items seem to have been thrown out yesterday, along with other unwanted clothing, in a black garbage bag; into a Vinnie's bin. Then there was a phase of scraping carpet at the skirting boards and vacuuming up the fluff. The sewing room has been re-arranged once again. I wonder when the Wild Dog carers will refuse to participate in these exercises. In the last couple of days she is re-arranging the kitchen cupboards (again) and the fridge, the rationale being that she needs to be able to reach things if I'm incapacitated. This drives me almost insane because I prefer to be on auto pilot around the kitchen; reaching for things without having to think where to find items. For instance, the last time I looked, plastic bowls and such were in the saucepan drawer beneath the oven; don't ask me where the pots and pans have gone to. Sometimes she relocates medications as well.

Do you find this Hollywood pagan festival called Xmas depressing? You know, Rudolph, plastic trees etc. etc. (mind you, the earlier Victorian model was little better). And Xmas cards accompanied by travel essays on double sided A4 sheets and mention of unknown recent generations of smart clever children!! Distributed to all and sundry, including wheelchair bound victims and their carers, those who need to plan day trips with disabled toilets in mind. Bah! Humbug!

A fuzzy view of her current medication schedule: