Forum Replies Created

  • james-mortimer

    Member
    May 17, 2023 at 2:54 am in reply to: overwhelming as a caregiver

    After 3 years of trying, its the sheer impotence that hurts so much,

    Jadmorty.

  • james-mortimer

    Member
    April 20, 2023 at 9:16 am in reply to: How Do you navigate Parkinson’s changes?

    My diary for 19th April gives an indication of where we are with my wife’s PD, how it changes and what we do to deal with them.

    LIVING WITH PARKINSON’S, 19th APRIL 2023.
    After almost 3 years, Jen’s PD has become a claustrophobic focus of concern, in which falls may happen at any time, happily so far with none of the many striking a hard surface. The 14 tea, water and wine spillages on carpets, sofas, beds, etc, have stopped, due mainly to Jen using a baby cup, and to eating mostly at the table.
    Two incidents of incontinence, both due to Jen being unable to get to the loo fast enough, occurred when sunbathing in the garden, and when exiting the “wrong” side of her bed at night, so it’s incontinence pants at night and minimum late fluids now, with no more trouble.
    Her damaged ankle, which was probably caused by impact with the concrete drive edging, continues to defeat the NHS Podiatrists, who first treated it in January. We have now seen 5 different Pods, and Tuesday mornings are spent at NHS Accrington “Pals”.
    Wednesdays see Jen in Daycare at Abbeyfield Residential Home, to give me a break. Her reactions to these trips vary, mostly favourably, and for me they show clear benefits in her walking and conversing. We hope to get attendance allowance shortly, which will cover the cost, plus we have now got Lancs Social Services involved and await the results of their recent assessment.
    Jen’s voice is now little more than a croak, and I often have to raise my voice, which doesn’t help either of us. Her short-term memory and location awareness are virtually non-existent, eg she may ask “what’s for tea” or “what day is it”, several times in a few minutes, and she regularly asks to “go home”, but can’t say where; or ” I want my mum”, or “why is my dad [who died in 1973] not with you”?. Kitchen time often results in things disappearing, eventually turning up in strange places [eg milk in the cooker, baking tray with the cereals].
    Today’s Daycare created a good atmosphere, but then a kitchen visit produced two cups of coffee and one of milk and water [for the third time], and a negative attitude. With the old Jen, this might have been deliberate, but it can only be the effects of PD. Later she began to dress rather than undress, for bed; she must feel totally lost and confused.
    On Tuesday, the reason for Jen not eating much lunch recently was solved when she appeared to have had two extra breakfasts of instant porridge, which the depleted container suggests may not be a first.
    OK; you could say that these are trivial things, but the number and constant repetition is leaving me depressed and guilty, always on the edge, irrational even. Life for Jen and I is rapidly losing meaning and enjoyment, with little future, no grounds for optimism, and only fleeting moments of pleasure.
    For Helen and I, we can only make life as tolerable as possible.

  • james-mortimer

    Member
    February 25, 2022 at 3:41 am in reply to: Caregiver fatigue

    This is my third go; both scrapped because it felt like I was just feeling sorry for myself.

    The detachment from reality; the totally alien world to the one you inhabited; the loss of your previous existence and easy companionship; the bone-weary tiredness that’s always with you; the sheer hell of watching someone suffer, about which you can do nothing except shovel down pills and give comfort; the inevitability of it all; the absolute need to keep your temper despite the repetitive questions [when will I get better?]; worst of all, the guilt at having lost it before you knew what the problem was [instantly forgiven by the patient].

    It’s not really your fault you know.

  • james-mortimer

    Member
    January 23, 2022 at 4:53 am in reply to: Thigh pains.

    We’ve tried Bari’s suggestion of assisted stretching and find it useful to get started in the morning. Our local physio was wary of over-stretching, in fact not overly keen, but it seems to help if done carefully. The most effective exercise seems to be lying on the stomach, raise and lower the calf  10 times, hold for 10 seconds, then repeat for both legs.

  • james-mortimer

    Member
    December 16, 2021 at 2:06 pm in reply to: Is there anything you wish you’d known as a new PD patient?

    Anyone unfortunate enough to starting with PD now won’t have the excruciating difficulties we had when Jen was diagnosed last November, no GP or PD nurse availability or guidance under the  lockdowns. We effectively had to find what, or if, treatment might be effective to counter severe back pains, be it heated waistcoats, vibrating rollers, pads fixed to arms/legs to pass currents, normally used on horses, adjustable curvature adjusters, ENDS transmissions, again via pads, etc etc. all of which we bought. Of these, only the ENDS machine has been affective in reducing back pain significantly, possibly because osteporosis has just been diagnosed and it seems to help that.

    I discovered long ago that the secret of success in many things is doing something again where you can put the knowledge learned before to good use, and the answer to your questioner is how nice it would have been to be able to learn from others the ways to benefit from their experiences.