Chapter 105 - Too Much Information

My prediction of a short holiday failed to come true, as we arrived home last Tuesday afternoon, some three & a bit weeks after leaving. I won't turn this into a boring travelogue except to say we visited 8 towns each for at least 2 days, some three & the last five. For most of the first week she experienced a range of difficulties, including an inability to walk very far without back pain & "thickening" as she describes it. The TENS machine was useful. I wonder whether the further she is removed from the last PEMF treatment her problems are less. She had the suggested 3 treatments of PEMF without any improvement in symptoms, rather a worsening I suspect. Perhaps it may relieve pain & stiffness but the TENS does that most effectively in our case, and can be immediately applied rather than wait until an appointment for treatment, as we found with the very effective Bowen treatment. Of course, all these treatments only (to my mind) impact on the side effect symptoms of PD. Although we took the mobility scooter with us she never used it once, instead declaring that walking was better for her. She is correct of course, except when doing so results in hip or back pain.

I think I had mentioned that I fitted extra grab handles at the door of the van to assist her entry & exit. Now I have added more. She tended to grab the corners of the shower & toilet, and anywhere she could gain purchase with her finger tips, when exiting either small room in the van. I could see fear of falling in her face when she needed a firm grip on anything to help her stand upright but only found slippery surfaces. So I added more grab handles. With the help of a cheap cordless drill I bought for the purpose, so it can stay in the van for emergencies. One handle in the toilet room to aid her in rising, another outside the toilet room door and one on either side of the fresh air vent in the ceiling above our beds. The latter aids her standing erect to ease back problems and is of great assistance when she needs help dressing.

The following is an email I sent to our daughter after we arrived home. Too much information? No, just facing reality about matters that should be discussed openly rather than the trivial (not really) matters "healthy" observers see in PWP's; shakes, shuffling & drooling and who possibly think those issues are not too hard to live with.



"[She] alerted me a few days ago about a problem that has been developing for some time I think. One of the common side effects of PD is constipation. For years she has been able to say that she does not have that problem, yet in recent times she has been ensuring that she eats liquorice, prunes, nuts & the like more than ever. I just assumed that the PD symptoms were catching up with her. Recently she has been sitting on a doughnut shaped blow-up cushion as well as a square foam filled cushion with a slot in it (supposedly good for posture) to encourage a motion. Also, I think we mentioned that we installed a bidet on her toilet mainly because she is usually unable to wipe herself with her right hand, the most affected hand, and she seems unable to train her left. Coupled with all of this she is often unable to rise off the loo, whether for #1's or #2's, so I need to remain close at hand, although our hand held CB radios are very useful, although public toilets are out of bounds except for disabled ones where I won't be arrested for entering. When we had the van built we thought the in-built toilet & shower were the answers to all our future problems when travelling. Unfortunately, cramped quarters cause her distress at times when she is unable to raise her clothing and in cleaning herself. I have added extra grab handles (about 6) around the van to help with stability. At home I installed a stainless steel "fireman's pole" in front of her loo & that with the bidet is ideal for her.

Anyway, yesterday she said she cannot "push" anymore, so just has to sit in position on the loo until I suppose what little automatic muscle action she has left slowly performs. This often means she makes several trips to the loo before anything happens.

What is the technical name (I suppose there is one?) for this inability to "push"? I need to do some research before we see her doctor in a few weeks. For years she has had pelvic floor problems for which one physio tried to have her do exercises she was incapable of even then, and most definitely any form of squatting is completely out of the question these days. I fear her current condition may lead to compaction problems.

No one seems to talk about these ugly sides of PD & like disabilities.

When we are away from the house she limits her fluid intake to minimise trips to the loo. I realise that this is bad for her too. Like yesterday for instance, we left [H town] about 9am and arrived in [Home] around 4pm. She didn't void until we entered the house & the only fluid intake was milk on her cereal & water when taking 2 sets of meds.

The time may be close when travelling is out of the question."


Our daughter (a health care professional) replied


"I don't know of a name for the lack of being able to push. The action she is
waiting for to happen on it's own is peristalsis of the bowel & the pressure
in the rectum then initiates the anal sphincter to open & expel the
contents.
You are right about the fluid problem as this is causing the faeces to
compact & go hard in the bowel's effort to absorb water. Mum would be better
to have more fluids & increase her fibre in the diet which in turn would
bulk up the stool, making it easier to expel when the time comes. It won't
happen over night as the bowel will need to be retrained in regards to
content & change in fluid that can be absorbed.
Maybe a laxative might help too- one of those natural things. Looks like
poo, made of figs, prunes apricots & other fruits etc. I took it when I was
pregnant & it helped heaps. I think it is called Naturlix or something. It
is in a green & yellow box from the chemist although some supermarkets also
carry it.
Tell mum that limiting her water intake is very bad for her diverticulitis
too & she could end up rupturing something with this habit & end up with a
colostomy bag or a bowel obstruction that could lead her to a bowel
operation where she could end up with a colostomy bag. Not to mention an
increase in the likelihood of bladder infections etc, & the build up of any
medications in her system that can't be expelled. may cause liver & or
Kidney problems as well. A urinary catheter is not the answer either neither
is an ileal conduit (where part of the bowel is used to get rid of urine via
a bag on the abdomen- like a colostomy). You would also need to be able to
change these bags anyway as I doubt Mum's motor skill would allow her to do
so.

You may just have to travel more upmarket where disabled facilities exist.
But tell Mum that she shouldn't continue with what she is doing because she
will end up with more complications than she needs on top of the existing
ones. Public toilets are horrible at the best of times. I don't know how
people in wheelchairs manage, maybe you could ask someone. I don't know
anyone personally enough to ask them, but those with MS & muscular dystrophy
must experience similar if not worse problems I would imagine. I know any
patients that I've ever looked after tend to be on regular aperients to help
them in the bowel area & once taken regularly, the aperients must always be
taken either morning or many people take them a t night with warm water &
more warm water in the morning so that the bowel movement is a morning
activity rather than any time later in the day that may interfere with other
activities.
Also be warned that if you increase fibre & laxatives, you also need to
increase fluids so that the bowel can absorb more into the fibre, thus
making the stool softer & more bulky.

Maybe more than you wanted to know, but there is a small window of where my
Nursing specializes theses days. I usually deal in what happens when things
go wrong in the urology & colorectal areas. Very smelly & messy area!!!!!"


So there. Shit happens.

Well, I thought I had an idea about such matters but even close partners find no need to discuss the sanitary aspects of daily living. I just made assumptions; everyone works much the same as I do, don't they? And I'm not too defective. I showed the emails to her, she did not complain that her difficulties were being aired, although she said that she is not constipated, just that the motion tends not to occur. Then I remembered assisting her in a toilet while we were away; I noticed that she was far from constipated and I discovered that she was not using toilet paper. I roused on her for that, warning her about infection & general discomfort, and she replied that is why she is so needful of her bidet at home (which, by the way, her doctor says can induce urinary tract infections in women). Her right hand is not up to the task. Just a little thing taken for granted.

Then I noticed the bottled water container I had retrieved from the van to our kitchen. A 12 litre container a quarter full. That means she drank only 9 litres of water, not including an occasional cup of herbal tea, or an odd cup of coffee in a restaurant and milk on cereal the whole time we were away!!! In over 3 weeks!! I feel guilty that I had not noticed this earlier. So for the last couple of days she has consumed about 2 litres a day. She complains that she has had to rise 3 times during the night. And last night she had a small accident.

Too much information? A useless phrase, reminding me of phrases used by that intelligent idiot in the USA, "going forward" & "on the ground". But then he has a mind like a lizard.

Chapter 104 - Another Trip

I am typing this off-line in the van park out of town at POW. There are some minutes left on my purchase of an hour of on-line time that cost me $8; and I don’t wish to waste it. Did I describe the horror day we had last Friday? If not then I’ll perhaps get around to it another time. We have been here since Sunday, today we intend to travel about another 150kms to another place.

Saturday was a reasonable day when we should have left; although she did need dressing. After we attended the First of the Month byo lunch at our hall she even did some washing and packing of her clothes.

Sunday was quite different. Except for our booking at the PD conference in POW on Monday we would not have hitched the van to travel over here. Her night had been quiet, only rising twice. Although she was able to breakfast at 7:30am her shakes prevented her showering until after 10am. She had attempted to shower after breakfast but felt to weak & unstable, just as on that Saturday we attended the wedding. Of course she was stressed by 10am. She needed help to finish showering to remove shampoo from her hair, although I didn’t do a good job as indicated by the flakes that needed to be combed from her hair later when she appeared to have a bad case of dandruff. She needed complete help with her dressing. She sat in her chair most of the time while I completed packing the van. She stayed in the house all the while, until I drove to the van to hitch, then she got out of the truck to check the van lights for me; that was the only involvement she had in preparing to leave, which is saying something because she normally checks to see what sort of mess I have made in the van. We left at 11:25am. She slept for much of the 2 hour trip. She has decided to return to meds at midnight and also 5am & that needs the alarm being set.

She slept well Sunday night, perhaps due to her new mattress. The 5am alarm was her only interruption during the night. The all day PD conference was most interesting, even useful. I ordered a DVD of proceedings to save me the chore of summarising them at our next local meeting at home. She said she had felt good all day except that her meds had a long kickin delay. Her ability to rise from chairs has deteriorated.

Tuesday, yesterday, we drove into town where she visited her favourite rag shop. I bought a small folding table for the van because we have removed the elongated table so that she can sit in the director’s chair I bought her last trip. Although better for her, she is having great difficulty rising even from that. The afternoon was enjoyed reading outside the van. Unfortunately, her left arm was exposed to the sun for awhile so last night she found that a rash and an itch had developed as tends to happen to her with too much sunlight. She also bruised one of her fingers attempting to open a meds bottle that had an idiot proof lid – she replaced the bottle because she can’t afford the hassle. All evening she practised rising from her chair, mostly unsuccessfully. This is bothering her a lot. I am trying to encourage her to march her feet while seated in the hope that will help her “talk” to her feet during standing attempts.

Our trip may be rather short.

Chapter 103 - Early Morning Darkness

It's now 5:40am. I have been awake now about an hour & a half. She says she rose at 3am. I didn't hear her. I did the same about an hour later, returned to bed remembering a circular list of "Things to Do", not written down, that keep me awake. She wakes at 5am needing to rise to get back into bed so that her feet "don't hang out". I help her. Soon she is snoring comfortably yet softly so I decide to quietly leave the bedroom and type this chapter. "Are you sitting on the side of the bed. Are you going to the loo?" "No" I growl, irritated that I woke her. "I need help to turn over." "You know this never works!" "I just need my knees lifted, then I'll grab the pole." In the dark the bedclothes obstruct the procedure, she has trouble grasping the pole, she turns, I draw the bedclothes up again. I switch on the CB radios then stumble away. I hope she is sleeping again.

Her ability to walk in the park has been improving. When we first began she developed back or hip pain within 5 minutes yet on Thursday we must have walked at least for 20 minutes, partly up a gradient, to have her slightly out of breath when we returned to the truck. Yesterday we did not walk; yesterday was a bad day, along with the weather.

This week we twice visited the PEMF practitioner out at Spud Town. I really have no idea whether the "therapy" is doing any good. Holding induction coils against her head & body scares me a little, even though there is no discomfort. Although yesterday I was concerned about her safety until she pointed out that she felt much as she had on the Saturday of the wedding, so perhaps this is what I should dread. This is how yesterday unfolded; several times out of bed for loo & errant feet in the early hours, then between 5 & 6:30am she had to sit in her favourite chair until she could return to bed to sleep soundly until 9am when I woke her for meds. She felt "awful" so returned to bed to sleep until 10am. Again I woke her, she wanted to sleep. She was still sleeping an hour later when I checked yet 15 minutes later she rose & showered and within a short time had dressed herself, except of course the harness with little clips. Her tremors were bad, and more so during the afternoon. Once she CB'd for help to raise her clothes in the loo, another time she needed assistance to rise from her chair; she said she felt weak. Late in the afternoon her chest was "tight" & her stomach was "churning". Beyond 7:30pm she began feeling better; even threw some clothes into the washing machine and at 10pm she said she was back to normal.

So perhaps yesterday had nothing to do with the PEMF of the day before. Yet I hope days like yesterday & the day of the wedding don't occur too frequently. Two days like that are not a trend. I am listing the mornings she is able to dress herself as an indication of whether the PEMF is having a beneficial effect upon her. So far, no. I gave a copy of the list to the PEMF practitioner, who agreed that so far there is no trend.

Tomorrow we leave for a PD conference in that little town that once had a POW prison. From there we meet up with friends to caravan aimlessly about the country side for a couple of weeks. Posts to this blog will probably not happen until our return.

Time for breakfast and then a thousand tasks.