-
How Do you navigate Parkinson’s changes?
In Lori Deporter’s recent column, she wrote about change. We inevitably experience a lot of change throughout our lives. Some of that might be related to our health. Some might not. The conclusion of her column is that we need to focus on what we’re still able to do instead of what we no longer can do.
How do you navigate Parkinson’s changes? Do you try to focus on your abilities?
-
7 Replies
-
I’m going thru my first experiences with stiffness. The left hip freezes and is so unpredictable that I’m afraid to go for a walk just because I might get stuck along the way. It’s difficult to manage walking and I know I need a better cane.
-
I am an accomplished amateur classical pianist, and when I retired 3 years ago I was looking forward to spending a lot more time with this hobby. Without question the single most annoying part of Parkinson’s for me has been the effect it has had on my pianistic abilities. There are days where I get so frustrated that I have to just take a break.
One way I deal with this is to focus more on what I still can do. I select less technically difficult pieces that are just as rewarding to play. I focus on lesser-known composers and repertoire. Doing this has helped me to stay active with a piano group I have belonged to for years, and they now look forward each month to hearing what recent discoveries I have found. The result is that I enjoy performing now as much as I ever have, and anticipate being able to do so for as long as possible! -
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. -
I have difficulty accepting that I can no longer do the things I once did. I especially struggle with fine motor control. Screwdrivers and buttons are my enemies. I sometimes get depressed as I struggle to complete the simpliest of tasks. The other thing I struggle with is how changes fluctuate so quickly. I can be having a great day physically and mentally and within the hour be in severe pain. Parkinson’s changes are so fickle and unkind.
-
PD has its own schedule for what it steals from us and when. I am 68 and was diagnosed 13 years ago. Over that time my fine motor skills and vision have degraded to the point that I have given up on my electronics hobby, something I have pursued since I was 8. I still have a woodworking hobby, but am moving away from power tools — they are becoming too dangerous.
My main coping mechanism is to insist that my wife and caregiver never help me do anything I can still do for myself, no matter how long it takes. When you stop trying PD has won.
-
I am nearing my 73 third birthday and have had Parkinson’s for 11 years. Mine is tremor dominant and I had DBS 2 1/2 years ago which has helped the tremor significantly. I have a number of other symptoms popping up including frequency of urination, trouble sleeping through the night, some neuropathy in my feet and my balance isn’t as good as it used to be. The trouble is, its hard to distinguish if these other ailments are actually a result of Parkinson’s or advancing age. I know other people with some or all of these ailments, who are of similar age or younger, and they do not have Parkinson’s. In spite of these other health issues I am able to continue functioning much as before. I attribute this to DBS, a commitment to regular intense exercise, and an attitude of not giving up. I am fully aware that PD could progress to the point I have to give up certain hobbies such as downhill mountain biking and dirt biking but I will do them as long as I can. As my neurologist told me during my last visit, most people your age are not doing what you are doing whether they have Parkinson’s or not. I would encourage every PD patient to exercise as best they can as that is the One Proven Way do slow the progression. I try to live my life remembering what my Grandfather told me. He said he had several health problems but chose to ignore them as best possible and just keep going as best you can. He was an old farmer who was not someone to mess with even in his 70’s and lived to be 91.
-
I was diagnosed in April 2015 at age 68. With little change to my normal routine, I continued to be very active in my men’s groups, driving, church and such until I fell in March 2022 and twisted my spinal cord down to C7. After that surgery, stiffness became increasingly more severe…never knowing if it was PD or as a result of the fall. Since then I have become very dependent upon my wife to help me with dressing, driving. and showering. I am so blessed that I have a wife (53 years) that supports me and helps me with almost everything.
I continue to do some accounting in home and do miss the accuracy of trying to use the keyboard. Using two fingers has never worked well for me! I tend to have many friends visit me at home rather than going out, and sitting on the porch on a regular basis is very refreshing.
I am always thankful for the things I can still do and try hard to remain positive from day to day. Yes PD is not always easy, but I strive to find the good in all things, removing negativity from my life as it is today. The past has many wonderful memories, but the future holds many more to come. -
Good morning, greetings from Lima, Perú.
My husband Raymond, Ray, has had PD for the last 11 years and half.
We navigate change by constant adaptation.
We have learn that we have to strength our adaptive capacities. Every body with or without PD does, but in case of PD, life is more uncertain, more unpredictable. We find hope in what is possible for us, here and now, and this is not little to us. This let us go expectations that can be painful.
Please keep asking open questions. The questions have embedded the answers. The questions help us to broad up what is possible for us here and now..
Saludos desde Perú
Ana María
Log in to reply.