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Post by questa on Jun 29, 2018 23:10:48 GMT
Ahh! the benefits of a simple village life...lots of aunts and uncles to help raise the kids and lots of nieces and nephews to help care for and honour the elderly. Sadly, as the young adults have to leave the villages to find work in the cities, the traditions are breaking down.
My sons live about 15km away but it is not distance that limits our visiting but time available. They are on the go all the time... my 13 yr old granddaughter pulled out her phone recently to check her appointments for us to meet 3 days later.
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Post by Kimby on Jun 29, 2018 23:22:02 GMT
I am glad that you have relatives, questa. I’d be f*cked if something bad happened to me, as I have no nearby relatives and only one niece, who lives in Chicago. I wouldn’t ask or expect her to care for me. (We’re on the outs now anyway, over a blowup on Facebook regarding transgenders, depression and government disability payments. Two of her friends are affected, and she chose them over me. Hopefully it will blow over, but young people are pretty passionate and fast to righteous indignation!)
The world/countries/governments/economies will need to come up with a system whereby elders’ interests are looked out for, especially if they don’t have children to oversee their health care and financial well-being. Even if you have money to pay for excellent long-term care, if you lose mental competence, who makes sure you aren’t taken advantage of?
I’m wondering questa if dementia is always a part of PD’s progression, or are symptoms mostly physical?
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Post by mich64 on Jun 30, 2018 2:20:58 GMT
Thank god that there are governmental aids for people in need, because I just happened to look at a private company for this kind of thing. A night mission (12 hours) costs 144 euros which comes to 99.50 with automatic tax credits. A daytime mission (8 hours) costs 148 euros -- 74 euros with the tax relief. 24/7 care for a month is 10,900 euros or 5,450 euros with governmental aid. As I'm sure you all know, assistance is one of the growing industries in our new world. We are so grateful for our Provincial Health Care and the additional health benefits from the Canadian Military, my brother-in-law is a Chief Warrant Officer in our Military. Along with her daily nursing care, she also receives in home doctor care, they come to her home. She also gets 50 to 60 botox injections in her hands and arms about every 90 days. We helped with the costs for her original wheelchair but she now uses an electric wheelchair that my parents helped pay for. The cost of the chair was around $32,000.00 but through grants and assistance the price was brought down to $6,000.00 with the understanding that it is returned. We all wished we lived closer and originally hoped he would request a posting back to the Base where most of the family still live, but we do not have the doctor's here that she needs. We try to get to her as often as we can and we call/text often.
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Post by questa on Jun 30, 2018 7:20:22 GMT
I’m wondering questa if dementia is always a part of PD’s progression, or are symptoms mostly physical? Until fairly recently PD was regarded as a disease of motor (movement) factors.Now the non-motor symptoms are getting more attention. It is clearer if I use a bit of help... Primary motor symptoms include resting tremor, bradykinesia (slowness of movement), rigidity, and postural instability. Secondary motor symptoms include freezing, small writing, mask like expression,rapid stammering speech and Dystonia (painful muscle cramps) Stooped posture (a tendency to lean forward) Impaired fine motor dexterity and motor coordination Impaired gross motor coordination Reduced movement (decreased arm swing) Akathisia (tendency to keep moving) Speech problems (such as soft voice or slurred speech) Difficulty swallowing Sexual dysfunction Cramping Reduced swallowing movements (causing drooling and excess saliva) As if this wasn't enough to keep them busy, the researchers turned to the Non-motor symptoms which include Cognitive impairment, ranging from mild memory difficulties to dementia, and mood disorders, such as depression and anxiety, occur frequently. Also common are sleep difficulties, loss of sense of smell, constipation, speech and swallowing problems, unexplained pains, drooling and low blood pressure when standing. I would add a couple more not seen in most texts, hair becoming oily with scalp getting little scabby patches and appetite irregular...feast or famine. Not everyone gets every thing and in different times and intensities.Unsurprisingly all the research shows that patients are more worried by the non-motor symptoms than the physical changes. This what you wanted, Kimby?
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Post by kerouac2 on Jun 30, 2018 10:22:28 GMT
Actually, I have been paying a small amount for dependency insurance for the past couple of years, highly recommended by the bank advisor since it is really cheap and remains that way if you get the policy early, but it becomes much more expensive if you sign up at a later age. It is supposed to fully cover any necessary assistance, nursing, cleaning, shopping, etc., "when the time comes." I am hoping that the time never comes and that I am just helping to finance other people.
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Post by Kimby on Jun 30, 2018 11:48:29 GMT
Questa said: “This what you wanted, Kimby?”
Thanks, questa. That’s very comprehensive. And sobering. And I see so many of my Dad’s symptoms in these lists...
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Post by mich64 on Aug 22, 2018 0:13:22 GMT
Yesterday my sister had an appointment with the Augmentative Communication and Writing Services Clinic. Her ability to speak has been gradually decreasing so they tested her in preparation for supplying her with technology to communicate. She was tested for the use of software through a tablet that uses eye movement with an infrared camera to choose letters, words and phrases so the software speaks for her similar to a device Stephen Hawking used but not quite the technology and not a synthesizer voice. They were quite impressed and so grateful that this type of assistance device is a possibility for her. She goes back on Friday for more testing.
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Post by questa on Aug 22, 2018 0:51:32 GMT
That is very interesting, mich. It would be terrible to be trapped inside a body that had no way of communicating with the people around you. Good luck and success for your sister (and all your family) Please let me know how things go with her progress.
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Post by mich64 on Aug 22, 2018 2:21:36 GMT
I will advise of her progress Questa, she is quite excited about this. We are just recently back from a visit with her and even with sitting in a chair right beside her and leaning in to hear her, I had to ask her to repeat herself on many occasions. By the end of the day, her lips are moving but she does not realize that there is no sound until we tell her so she is hopeful this will help her. As far as I know, all of this is covered by our Provincial Health Insurance Plan as well.
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Post by mich64 on Aug 27, 2019 15:02:35 GMT
Just back from visiting my sister this past weekend. She has been to the cinema a few times this summer so I thought it would be good to take the opportunity for her to have another outing. We had a fun time. However the night finished with a horrible experience.
They rely on a taxi service that provides wheelchair accessible vehicles. My brother-in-law called the day before to confirm the availability and appointment time. He was told he just had to call an hour in advance of pick up the following day. He had no problem arranging the pick up and confirmed the time for the return home. Once the movie was over, we were waiting for the taxi confirmation on their app (you can see where your cab is and how long till arrival) when no notice came and it was about 15 minutes past the booking time, my brother-in-law called the dispatcher. The end of the very long story, they left us stranded for over 2 hours with no idea when they could get the cab to us. We finally had to leave the movie theatre and went over to a Holiday Inn about a 10 minute walk away (it is now 1:00 a.m.)
The night desk clerk was astonished at our situation and invited us into the lobby. At one point my brother-in-law asked what was the worst case situation could be and they admitted they might not have a driver until 8:00 a.m. After some very strong words and threats of contacting the media, they finally got a driver to us at 2:00 a.m. and the dispatcher admitted that at about 10:00 p.m. they knew there was going to be a problem. I am waiting to hear from my brother-in-law as to what happened when he contacted management the next morning.
The next morning my sister was giggling when we recounted the evening with a bit of humour, but it was a very disturbing situation and I was very concerned how this stress was going to affect her health.
The taxi service advertises 24 hour service for their wheelchair accessible vehicles and confirmed bookings. We never expected to be left stranded and were so thankful for the kindness shown to us by the night clerk at the hotel. What if there was not a hotel near by, what if it was winter? It was devastating when they had no response when he said "listen, we will have to take my wife out of the theater now and stand on the street, the building is closing."
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Post by kerouac2 on Aug 27, 2019 15:09:37 GMT
That is an awful situation, which really shows that people who do not live in a truly BIG city are up the creek when there are service deficiencies. And yet even when you live in a large city in the world, this sort of thing can happen unfortunately, albeit more rarely.
I hope it was a good movie.
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Post by mich64 on Aug 27, 2019 15:30:16 GMT
And yet even when you live in a large city in the world, this sort of thing can happen We are so happy that this service is available where she lives because you are correct, wheelchair accessible cabs are not widely available in most places. We do hope this never happens again to anyone and are hoping their response will be that policies and procedures will be enhanced so this does not happen again, it easily could have been so much worse. We searched UBER and found that there are only 6 cities that offer the service which was sort of a surprise but when we discussed it, not really, the vehicles are very expensive for a self owner to take on. The movie, Angel Has Fallen, we all enjoyed it. She loves action movies.
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Post by lagatta on Aug 27, 2019 20:59:43 GMT
Montréal provides the service with a diagnosis, and one might not necessarily need a wheelchair. Two neighbours of mine benefited from it: one had dire complications from diabetes and could scarcely walk, and another was a member of my co-op and had an "orphan" (extremely rare) disease similar to MS. They paid the equivalent of a public transport (bus + metro) ticket and could travel anywhere in Montréal, and to some nearby suburbs. From what we could see the service was courteous and generally timely. No surprise that most of the drivers were recent immigrants.
questa, is CBD (a cannaboid that does not get one high but soothes pain and anxiety) of any use with respect to your condition? I've been contemplating it for a far less dire condition, a bit of arthritis that doesn't carry such a prognostic but does make some tasks painful, such as putting on the contour bedsheet (no problem with top or covers) and running a heavy vacuum hard on my lower back. I bought a featherweight vacuum on sale and it makes quite a difference; I run it early every morning with no discomfort.
Can you travel to Bali?
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Post by mich64 on Aug 27, 2019 21:26:08 GMT
$80 CDN for round trip to the cinema.
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Post by kerouac2 on Aug 28, 2019 6:13:27 GMT
Ouch. I realise that more mileage is involved, but the current price in Paris for this service is 8.20 euros at busy times and 4.80 at off hours. That includes the disabled person and a companion for up to 15 kilometres. Longer rides are a bit more, of course.
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Post by lagatta on Aug 28, 2019 11:39:53 GMT
It would come to about that here, as well. 15km would get you just about anywhere in Paris and some immediate suburbs.
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Post by kerouac2 on Aug 28, 2019 15:18:02 GMT
I saw that there was a maximum price of 41 euros for a distance of more than 50km, but I doubt that it means that you can ask to go 300km. I imagine that longer distances must be justified. Back when I used to take it with my mother, it only cost 2 euros per ride, but I very much understand that once people found out what a good deal it was, it was abused. Although the Paris service has quite a few dedicated vehicles, sometimes they would send an ordinary taxi, even when I said that my mother was in a wheelchair. Luckily, in all of those cases, there was a young muscular driver who was able to haul her into the taxi, but what I looked at was the taxi meter. Even though I didn't have to pay anything, sometimes the taxi arrived with a 10 euro "approach" fee on the meter already, and the trip might take the meter to 18 or 20 euros. I assume that that was the rate that the taxi company charged the municipal transportation service.
I will not go so far as to say that transport of the disabled is a new way to scam the taxpayers, but I do believe that there are abuses on both sides.
The American movie Give Me Liberty was made in Milwaukee about such a transport service, and it was extremely edifying.
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Post by mich64 on Aug 28, 2019 23:22:14 GMT
I was a bit shocked at the cost, but understand that the vehicle is expensive. When he has rented an accessible vehicle to come here to visit the charge is $150.00 per day.
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Post by questa on Jan 26, 2020 0:55:14 GMT
I started this thread intending it to be a bit of a look into PD and I am pleased to see it has carried on. Treating PD is a case of trial and error, matching up meds to symptoms. February 2019 I was having problems with one...constantly sleepy...so came off it at Doctors advice. The hospital was supposed to send me a booking for 3 months check but nothing came. Meanwhile the combination of lack of treatment and fading light brought on gradually the worst clinical depression I have ever had (and I have been in bad places a few times) I won't go into details here.
Rang the hospital who said I was 'on the list'. My GP was reluctant to change meds so it was not until August 2019 that she rang and was told there were no times available until December. By now I had deteriorated in all the aspects of the disease, had a couple of nasty falls, and couldn't remember simple things and language.
At this point, dear Reader, it was this forum and the kind hearts caring for each other that held me together. I had no words to tell you at the time.Finally saw a young GP who put me back on my original pills double strength, plus others. My specialist OK'd it and the fog lifted a bit.
I now have a cleaner who does my heavy work fortnightly. He is from a care agency which has Govt Subsidy and my son pays the rest. I have a walking frame to prevent falls but prefer my walking stick. I am able to do my shopping and cooking. I do some disorganised gardening but my hanging baskets had to go as I am reluctant to climb ladders.
Lost my keys a month ago...car,house plus others...in the small mall near my house. I phoned the motoring organisation hoping I had dropped them inside the car. No Luck, but the man offered to drive me to the police station nearby to report the loss. I was right behind him as we entered... just close enough to hear him say, "I have an elderly woman in the van who has......"
No-one has called me elderly before!
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Post by questa on Jan 26, 2020 1:14:06 GMT
is CBD (a cannaboid that does not get one high but soothes pain and anxiety) of any use with respect to your condition? I've been contemplating it for a far less dire condition, a bit of arthritis that doesn't carry such a prognostic but does make some tasks painful, such as putting on the contour bedsheet (no problem with top or covers) and running a heavy vacuum hard on my lower back. I bought a featherweight vacuum on sale and it makes quite a difference; I run it early every morning with no discomfort. Can you travel to Bali? These were the exact chores that I had trouble with, lifting the corner of the heavy mattress one handed to fix the fitted sheet and using the heavy high suction vacuum. My chap also does stoves, shower recess, and mop floors. CBD is not as good as was hoped. The effects are no better than Ibuprofen etc. Bali days are over, the place has changed and I'd rather remember it as it was.
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Post by kerouac2 on Jan 26, 2020 5:24:16 GMT
I'm glad you're keeping up the fight. So many conditions that used to signal the imminent end of meaningful existence can now be treated, not perfectly of course, but well enough to keep one hoping for more improvement. The medical profession is impressive, but it is clearly important to be matched up with a motivated doctor.
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Post by bixaorellana on Jan 26, 2020 5:37:45 GMT
Finally saw a young GP who put me back on my original pills double strength, plus others. Questa, I'm assuming these are some other original pills, not the ones that were making you sleepy. Thank goodness you're feeling more yourself and also thank goodness for your cleaner. Not only will you not have to struggle to do those chores, but having your house kept clean must keep you in better spirits.
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Post by bjd on Jan 26, 2020 7:37:33 GMT
You must have extremely strong will-power, Questa. You say that for a few months this past year you were in a deep hole but it was not noticeable in anything you posted here. You must have been making quite an effort of will to sound your usual self and you certainly managed.
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Post by questa on Jan 26, 2020 9:47:20 GMT
AHA...you hadn't noticed I stopped doing the famous people game. I couldn't be bothered to think. Also I seem to use my sense of humour to hide behind. When it's all too hard there is a joke in there.
Bixa, the meds were almost the same and it was higher dose for a few days to get the blood levels up then onto something more slow release to keep on an even keel. I slept a lot which suited me, but I am back to normal sleep now. At least, and tell this to all with problems, I knew that I would get over it.The old mantra "This, too, will pass" serves me well.
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Post by questa on Jan 26, 2020 10:13:07 GMT
I must say here that when I read of the struggles and grief that so many of you deal with,, I am filled with admiration for you. Kerouac went so far over and above the call of duty with his mother. Whatagain has had more pain with family and neighbours. Others have watched their loved ones gradually slip away. I have only myself to worry about, you are the ones with courage, not I.
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Post by kerouac2 on Jan 26, 2020 12:02:00 GMT
Pshaw!
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Post by mickthecactus on Jan 26, 2020 12:14:19 GMT
AHA...you hadn't noticed I stopped doing the famous people game. I couldn't be bothered to think. Also I seem to use my sense of humour to hide behind. When it's all too hard there is a joke in there. Bixa, the meds were almost the same and it was higher dose for a few days to get the blood levels up then onto something more slow release to keep on an even keel. I slept a lot which suited me, but I am back to normal sleep now. At least, and tell this to all with problems, I knew that I would get over it.The old mantra "This, too, will pass" serves me well. I noticed you had stopped playing the rhyming story game. So pleased you are feeling better.
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Post by mossie on Jan 26, 2020 12:23:16 GMT
I have always breezed through life, hiding behind the mantra "It will never happen to me.
However, after my stupid accident I start to wonder, after all I am well past my sell by date. Next Saturday I have to attend the hospital for some day surgery and do wonder if that will be as easy as past visits have been. I have been wondering to instruct the anaesthetist "Make sure you give me enough that I don't feel a thing, AND that I don't come round again"
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Post by kerouac2 on Jan 26, 2020 12:50:03 GMT
Oh, I buy products reaching their sell-by date all the time. They are perfectly fine AND 30% cheaper. And I often eat yogurt that expired 2 months ago when I find it at the back of my refrigerator. Mossie, you are just an old yogurt as far as I am concerned.
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Post by questa on Jan 26, 2020 12:52:31 GMT
Oh RATS! I have you pegged as our first centenarian and you go and want to spoil it. You will have your procedure done with elegance and style, young man, and don't go talking negative stuff. When you clobbered the other car, were they both 'write-offs' or mere bingles. Just think of all the aircraft you safely landed. I think you are owed a prang by now. Whether you continue to drive is up to you but my Dad always made us get back on a horse we fell off, even for a minute. He said it stopped us being afraid of riding. Anyway we need you for the revolution, numbers are still down.
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