Seeler's complaints

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Ooh, cleaning the fridge is on the to-do list. I feel like that would take out everything I could manage for a day.
We do get cleaners in. I'm hoping we can manage to not have a full fridge for a bit, and I can get them to do a good washing of a removable part or 2. I guess I could always request extra time and just pay to have it done, although we would probably have difficulties finding things for a while.
 
Seeler, I find it riotous that in a thread entitled your "complaints" that you, with a chronic disease and a couple of decades my senior, detail a week that would absolutely exhaust me... :giggle:
 
Kimmio Laughterlove said:
Busy time. Sounds good! Where did @ninjafaery move from?
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Ninjafaery moved from the "Golden Triangle" in southern Ontario where rents are closer to Toronto's (although Toronto renters would find rent cheap there).$1200 for a really crappy moldy bach! In Freddy, got a 1 bed in a super location for being carless for $675 plus $100 hydro.
Absolutely love it here.
 
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It's been nice "hanging out" with Seeler. She's made me feel so welcome:giggle:
It's made all the difference....helping me get my bearings, and I am very grateful to her.
And yes, she would put most of us to shame with how active she is.
I've been busy learning where things are, but I'm also looking forward to the fall.
 
A more jaded, local view.
themanatee.net

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Different premier now, but the same issues.
 
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Today's News: Some world leader said the status quo on gun control is sufficient!

What happens if leaders without control and responsibility can't see the alternative is something that is eating them from within?

Is it bete noire ... when authority begins to dislike everything that is free of their control ... insinuating freedoms of the other kind?

What does freedom mean in an altruistic way? Use caution with your personal interpretation of bete noire! You could begin to hate yourself and become self-destructive as it appears the human psyche incarnates ... virtually unseen! Hoo dahth unk it'd go down that way --- some toady!

Follow the derivation of yah hoo da'th ... it rides on as something to chuckle over as a circuit rider ... even visiting the Streets of La Red-O ... and folk bound by their injuries! PTSD? Can we get over it without learning something as prodigal offspring of gods of myth ... a portion of the abstract? Out of our minds may be something akin to NDE and OBI!

In some traditions this would be a dive as d' OVE aure! Could be part of my revelations (resurrection) of past visions (observations) for that stuff some folk are blind to!
 
Wow Seeler. That was a busy week for anyone. I try to only do my fridge when I am really low on groceries. Helps a lot but I also end up finding those surprises you don’t want like an old spill.

Glad you are keeping well this summer
 
Wow! You people are my support group. Thanks for propping me up with your kind words of encouragement.
 
ninjafaery said:
It's been nice "hanging out" with Seeler. She's made me feel so welcome:giggle:
It's made all the difference....helping me get my bearings, and I am very grateful to her.
And yes, she would put most of us to shame with how active she is.
I've been busy learning where things are, but I'm also looking forward to the fall.
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Ninjafaery, It's been my pleasure to spend time with you. It is hard to beieve we just met 'in the flesh' last month. It will be great when you move into your apartment just one bus ride apart. In the meantime we should try to get together as often as we can.
I felt embarassed that you ended up cooking our dinner last week, but you were very gracious about it, and you are very competent working in an unfamilar kitchen.
I will pace myself better next time.
 
I saw my neurologist last week for my semi-annual visit. No big changes; my physical condition continues to deteriorate as expected, but not enough to warrant any changes in medication. I talk to her about my frustrations with not being able to do even minor things that everybody takes for granted like not being able to tie a string to a balloon, and sometimes spilling my food. She says I tried to do too much, I told her that if I don’t do anything my muscles will fade away to the point I won’t be able to do anything – which is about all I do now. She thinks I’m too quick with my movements, getting up from a chair for instance.

I also asked her for advice about how to tell if a symptom relates to Parkinson’s or something else (ie. arthritis, or dizziness or pain) or is it somrthing that can be treated?

my eyes itch and water all the time. Probably allergies getting worse, but possibly the Parkinson’s is interfering with my not blinking often enough. I see an eye specialist next week. My left ear seems blocked, and my nose runs; is this something I should be concerned about other than the inconvenience. Could it can be connected with my eye problems. I don’t know. I have trouble swallowing, most noticeably when taking pills, but also on some foods. I think that’s connected with Parkinson’s and that there’s nothing they can do about it. And there’s that constant pain in my neck that seems to be spreading to an ache in my shoulders and back - arthritis My neurologist said she doesn’t have a magic wand or a crystal ball and she can’t solve all my health problems. I really didn’t expect her to. Maybe I shouldn’t have brought them up.

Nevertheless, I was able to enjoy last week. We haven’t gone anywhere all summer, but I looked forward to having people visit. Carola and her husband were passing through on their way to Nova Scotia. My nephew and his wife, from Alberta, were touring the Maritimes with friends and would stop by for a day or two. And my sister and her husband would be coming down from Ontario for a week. I didn’t realize that this would all happen at the same time.

Sis and BIL arrived on Tuesday and stayed with us until the following Monday. We have a relaxing good time when we get together at least once a year, but this year we had to work in my nephew (her son’s) two-day visit. And I was determined that I wouldn’t miss having dinner with Carola and her husband and, of course, ninjafaery. (For more about that in social)

Thursday was a busy day. In the morning we went out to Seelergirl’s place to see her and her children. 1Just after lunch we went for wine and cheese with a cousin who has been ill. Then home for a short time before meeting the wonder Café people for a delightful meal. My sister and BIL made their own supper and had a mutual friend over to visit. I got home before she left the house and we all played cards through the evening. A long day, exhausting, but very enjoyable.

This is what I mean when I think about it -what lies ahead for me? Will I continue to be able to do things like this? Or will my world get smaller and smaller as Parkinson’s advances?

Sure I was tired but I’m getting rested up this week and I am determined to do as much as I can for as long as I can. And then, who knows what the future holds.
 
It is SO hard trying decide what symptoms come from what disease (or aging). I think your neurologist wasn't listening and making herself useful to you. Your concerns are totally understandable. She could have suggested discussing them with a support group or therapist of some type. A few days ago a friend with Parkinson's expressed some of the same concerns - you aren't alone in this! Some of his concerns are made more bothersome because his wife is fighting cancer and not as able to look after him.
 
Seeler said:
I saw my neurologist last week for my semi-annual visit. No big changes; my physical condition continues to deteriorate as expected, but not enough to warrant any changes in medication. I talk to her about my frustrations with not being able to do even minor things that everybody takes for granted like not being able to tie a string to a balloon, and sometimes spilling my food. She says I tried to do too much, I told her that if I don’t do anything my muscles will fade away to the point I won’t be able to do anything – which is about all I do now. She thinks I’m too quick with my movements, getting up from a chair for instance.

I also asked her for advice about how to tell if a symptom relates to Parkinson’s or something else (ie. arthritis, or dizziness or pain) or is it somrthing that can be treated?

my eyes itch and water all the time. Probably allergies getting worse, but possibly the Parkinson’s is interfering with my not blinking often enough. I see an eye specialist next week. My left ear seems blocked, and my nose runs; is this something I should be concerned about other than the inconvenience. Could it can be connected with my eye problems. I don’t know. I have trouble swallowing, most noticeably when taking pills, but also on some foods. I think that’s connected with Parkinson’s and that there’s nothing they can do about it. And there’s that constant pain in my neck that seems to be spreading to an ache in my shoulders and back - arthritis My neurologist said she doesn’t have a magic wand or a crystal ball and she can’t solve all my health problems. I really didn’t expect her to. Maybe I shouldn’t have brought them up.
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This gave me a bit of a cynical laugh. The answer to a question like that is often limited.
For some of it, trial and error with targeted treatments can help. Like with your eyes - does an oral antihistamine or eye drops intended for allergies help (especially longer term for the latter, as if dry eyes just a drop may give some temp relief if it's dry eyes). I still struggle with this when I get a cold - is my sore throat all just from the cold or is it an HAE attack too, but I know if there's a question to try one of the HAE meds although I do dislike doing it just to test and see. For some things though there's the issue of drug interactions or interfering with a different condition and with something like pain where a drug doesn't target based on the cause? No good answers.

I think it's always good to be able to bring things up with a doctor though, as every now and then they may surprise you with a good solution. Just prioritize the issues based on how much it bothers you and also factoring in what a particular doctor would be most likely to help as time is often limited. Plus try to have realistic expectations. It is frustrating.

I'm glad you did get to have a good time with all the visitors and were able to manage that!

Tip for the pills - if there is no issue on food restrictions with them you can experiment on taking them with something other than a clear liquid. Some people find that pills go down better with a smoothie or pudding or yogurt or something like that. If there are restrictions on food I would ask your doctor about getting help with that, there may be some thickening agents that can be safely used. It may take a referral as not all doctors would be aware. I found out from my sister that there are actually quite a few categories for how things are rated for swallowing and hospitals have different viscosities of things like jellies.
If swallowing becomes more of an issue than just pills and food on the rare occasion, please do get whatever help you can with that. A speech and language pathologist can give some exercises - maybe you're already doing this? Not sure if an ENT could be any help with it.
 
I think the US actually has a bit better use of the team model than what we have here.
I don't know if your neurologist is part of such a team, but I do know my rare blood disorder clinic has been trying to expand that aspect. They have a PT (joint issues & bleeding go together so exercise guidance is helpful), the social worker, in addition to the nurses who focus on the clinical trials, the other nurses and the doctors.
With your neurologist I could see a team that include PT, SLP, ENT (if useful), etc.
I think counsellors should be included with any of that too.
 
Swallowing issues can also come from neck position. Here, people can be referred for a swallow assessment or even a barium swallow assessment, where they look exactly how the food goes down or if you are at risk of getting it into your airway. Dieticians and speech language pathologists are the ones that are involved in that.
 
Swallowing issues can also relate to not enough saliva

It sounded like you didn’t get support from your doctor and that is not good. Chronic health conditions are complicated and deserve to be assessed. Just telling someone to slow down is not right

Do you have a primary care doc? Who I erses your health? If so I would ask for an appointment but explain you want to go over your general health issues and take some time to figure out options. Make sure you get scheduled enough time. Then write down your issues to discuss. I know often appointments are rushed so get enough time
 
Thanks friends for your response to my last post. I appreciate the support from my virtual friends.
I do belong to a Parkinson's support group. I found it very supportive when I first joined, occasionally we had a speaker along with our short business meetings. We would break into small groups and discuss whatever interested us at the time. Sometimes it was welcoming in person, and getting to know them, and introducing ourselves. We shared information – how long have you had Parkinson's? What medications are you on? How does this affect your life? And we allowed emotions to show through, including disappointments, frustration, worry, anger as our bodies for letting us down. And our fears for what the future held for us. We also shared accomplishments and joys; and hints that we had picked up ourselves on how to cope with the minor frustrations of daily living with Parkinson's.
But then we had a change in leadership. In addition to changing the time and location of the meetings, we also changed our focus. Now instead of support for individuals we seem to be more involved in conducting business, reporting on outside activities, and reports on research into the causes and treatment of Parkinson's. Rather than sharing our concerns, we are encouraged to think positively and only share hopeful attitudes – no rants against fate that we are struck by this disability. I still attend but I don't feel that I can be all about sharing my concerns as I was at the beginning.

I am working on my swallowing. I always have applesauce handy in case the pills will not go down with water. I take small bites of food, and pay attention to the process of chewing and swallowing; and I have a glass of water nearby.
I see my eye specialist and he prescribed drops for the itching and watering of my eyes. He also set up an appointment to flush out the ducts between my eyes and nose. My family doctor's nurse sringed's out some wax from my ear, but it still feels blocked. I will have it checked by my family doctor in a in October when I have an appointment for a general discussion of health concerns.

Now for the good news. My favourite season – autumn. Activities are starting up, I was afraid that due to my lack of regular activity through the summer, I might not be strong enough to participate. But I have bowled twice now and can't my average over 60 which was my goal at the end of the spring season. And the square danced last Thursday night and I was able to keep up with the others in the square. I only set out one dance to catch my breath while Seelerman danced with one of the single ladies. But we all do that. I'm back involved with the volunteer
lunch program at the church - and book club starts tomorrow night.
After a cold week, the weather here has been great. The leaves have just begun to turn colour. Yesterday wasn a perfect day for the Parkinsons SuperWalk raising money for research. I am very shy about asking for donations (I usually just ask family) but this year I asked friends at churchand bowling and raised $200.00 for the cause. I walked two-thirds of a 3 k walk on a trail that follows an abandon railway track - tree-lined in the city. Seelerman, who walked beside my to my turning point, continued on until the finish. A good friend who lost her husband to Parkinsons complications, accompanied me on the walk back. Tired - but I'd rather be tired from walking than from sitting.
 
Congratulations on your walk and fund raising efforts

I agree about feeling uncomfortable asking friends to support a cause. There are just so many causes and do you give to each? It is actually something I worry about with friends. Telemarketers are different. I just respond we have a few chronic family conditions and I only support them

I am sorry you are not getting the same level of emotional support from your group. I wonder if you have asked about including a 15 minutes “let our hair down and feel free to complain” part of the meeting. Perhaps then followed by someone giving an uplifting reading or comment. And then in to business?

Or perhaps another group, even just a casual meeting of four to share worries. I would think that as people experience different issues that lived experience from others can really help

It can also help to blow off frustration with people who understand. It’s too bad your leadership only wants to sugarcoat things

Enjoy the fall. We picked one of our apple tress yesterday. We don’t spray or anything so we have more “cider “apples than anything else but still fun
 
Sorry to hear about the shift in your group's focus Seeler. The "tyranny of positivity" can be quite detrimental & paradoxically diminishing of one's experience & emotions - but sadly it is also becoming more and more common.

Glad to hear you are back to bowling & dancing - I know these have been so important to you. Socializing & moving - great combo. And kudos to you for your Parkinson's Walk participation & fundraising! I too hate asking for money. Instead of making personal appeal, I've more recently taken to making an 'announcement' - at church, at (former) Presbytery meeting, on facebook etc - and inviting anyone who is interested to support my effort. And wow - I've been so blessed by response - to my great surprise!!

Hoping those eye & ear challenges soon subside. Sounds like you're doing what you can to get it addressed - as I would fully expect, knowing you! :angel:
 
Carolla said:
The "tyranny of positivity" can be quite detrimental & paradoxically diminishing of one's experience & emotions - but sadly it is also becoming more and more common.
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"Tyranny of positivity" is a great expression - one I intend to use a lot!

Whatever our limitations -physical or mental - a paradoxical truth I've grown to understand, is to be in a position to make positive steps it's also crucial to express our disappointments, anger, tears. We're thinking, feeling, human beings - not robots.
 
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