Parkinson’s Progression Leaves My Sister Increasingly Frustrated

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by Jo Gambosi |

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As I write this, I am feeling impatient, frustrated, anxious, and a bit concerned. The source of my anxiety and concern relates to my sister Bev and her Parkinson’s disease (PD).

Bev was diagnosed in 2017 and currently has stage 3 Parkinson’s. I’m concerned because she thinks her disease may be progressing. Among the current symptoms of her possible Parkinson’s progression are increased difficulty with gait and balance, increased short-term memory issues, and chronic fatigue. I definitely have noticed her decreasing cognitive function when speaking with her on the phone.

Bev is still able to carry out daily activities, including dressing, bathing, cooking, and baking, but she struggles with memory, concentration, verbalization, and certain tasks.

“I am forgetful, have poor memory with names and numbers, and it is difficult to remember and focus on things,” she told me. “This is not only frustrating for me, but also for my family.”

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Bev’s neurologist has ordered an MRI and cognitive testing in early June to evaluate her symptoms and the degree of Parkinson’s progression.

One cause of cognitive issues in PD is a decreased level of dopamine. According to the Parkinson’s Foundation, “Other brain changes are likely also involved in cognitive decline in PD. Scientists are looking at changes in two other chemical messengers — acetylcholine and norepinephrine — as possible additional causes of memory and executive function loss in Parkinson’s.”

Of all these PD challenges, I asked Bev which frustrated her the most these days. “Trouble walking, not being able to remember things, or being unable to think of the right word,” she responded. “When I think about how I used to be able to do things by myself, it sometimes makes me mad and a little depressed. I feel like I have lost my independence and am losing myself.”

Fellow Parkinson’s News Today columnist Jean Mellano relates this beautifully in a column titled “For Parkinson’s Patients, the Sense of Loss Is Relentless.” Mellano writes: “Parkinson’s disease is a disease of loss. It chips away one’s ability to perform seemingly mindless tasks.”

Bev says that she also becomes frustrated with feeling tired all the time. She says that sometimes she feels that she could sleep forever. The smallest task exhausts her.

There is no definitive cause for the fatigue associated with PD, but according to the American Parkinson Disease Association, “It is likely a combination of interacting causes, only some of which we understand and can modify.” Some fatigue may be related to medications or aging, the association noted.

Bev presses on despite the possible effects of Parkinson’s progression. She says, “I will keep on doing what I can, when I can, to the best of my ability.”


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Paul Hawcroft avatar

Paul Hawcroft

That describes my current symptoms perfectly. I am 71 years old male.
Can anyone suggest any treatment etc to combat this. All suggestions welcome.
The frustration is driving me mad.

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vicki avatar

vicki

Exercise, I have watch people of all ages improve with regular intense exercise. Rock Steady Boxing, vigorous walks, exercise bike, etc... look for something you will enjoy.

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Jean mellano avatar

Jean mellano

I so relAte to what Bev is dealing with. People say I look fine, yet I feel like crap. My disease is progressing and it seems every day I have a new symptom or an existing symptom gets worse. It is so ironic that exercise is what is supposed to help us, but the fatigue and lack of motivation brought on by PD, can prohibit one from exercising with intensity. Intense exercise in the earlier stages of my Parkinson’s did help me, plus, I was an athlete before PD and I had the ability to push myself and workout hard which made me feel better. Having been a dancer and an athlete has also made me more cognizant of my body failing me. Sadly, , as my Parkinson’s is progressing , I feel I can no longer help myself as effectively as I could in the past. Stay strong Bev.

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Philip Chu avatar

Philip Chu

@Paul Hawcroft, there is a study on supplementation of nicotinamide riboside with PD patients to increase their NAD+ levels which theoretically help increase ATP (energy) production. See https://pubmed.ncbi.nlm.nih.gov/35235774/

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Paul Hawcroft avatar

Paul Hawcroft

Thanks Vicki. I already do about a 3 mile walk as often as I can. Plus still playing Golf, but have succumbed to using a buggy. Plus I do exercise at home. Will continue the regime and hope I can slow this monster down !!!
I just wondered if there was a tablet that I could take to improve the fatigue !!

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Annie Perkins avatar

Annie Perkins

@Paul Hawcroft Are you able to get medical marijuana? There are 2 main blends, one is supposedly an "up" feel, and the other more of a calmness (for sleep) feel. Most CBD outlets will have the legal limit of
THC built in (like Delta-5 or Delta-10)- so ask for the one closest to Sativa, for a more energized feel. Ask if you can just test one at home. That'll tell you if it's right for you,

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John Knottenbelt avatar

John Knottenbelt

I am a 78 yr old man, diagnosed 7 years ago with stage 2 PD and on sinemet and pramipexole. I was also going down the slippery PD slope, so I could not dress myself or get out of a chair without assistance, needed a wheelchair for any distance over 20m, shuffling gait, unable to turn in bed , no piano playing etc, you name it I had it. I made 3 changes, don't know which is benefiting me but mirabile dictu (wonderful to relate) I seem to be going into remission = not only am I not deteriorating but I seem to be improving - I can get dressed, with shoes and socks, without assistance within 15 min vs 60 min in Jan this year. My stairlift is no longer used, I am more upright and walk with heel strike for 400m vs 20m, I am playing the piano and trumpet and even table tennis, The three things are (a) I stopped atorvastatin 12 months ago (b) From 3 months ago I take 30ml of cold pressed extra virgin olive oil (must have peppery finish and a green colour) with my morning fruit juice - I read somewhere that olecanthals are helpful in treatment of brain plaques and reducing inflammation (c) I exercise to Scottish country dance music, emphasising exaggerated movements (eg marching with lifting up the knees) "Dancing strings of Scotland" seems to unlock the pathway to free movement.
Meantime medication is unchanged - 5 Sinemet plus a day and 2.4mg pramipexole. The changes seem to be related to the olive oil more than anything. Perhaps worth a try but check with your medical advisor, I don't want to be sued!!
Best wishes, John

Reply
Cindi Betts avatar

Cindi Betts

I was diagnosed with Parkinson Disease at 46, devastating....but I found exercise through renovating our house, major renovation, has kept me motivated and looking forward to another day. I have learnt to paint like a pro, learnt to build a bulkhead wall - all by myself, hubby was away for work. These things are just a few of the things I have learnt and realised I am very capable, yes sometimes slow and other days I am not feeling OK, but there is always tomorrow to finish or start another project.
I have built muscle mass and strength in my legs, arms and torso and it feels amazing..
So from one sufferer to another, try something out of your comfort zone, you may surprise yourself and really enjoy it!!!!

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