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Post by questa on Jun 24, 2018 8:49:23 GMT
Post by questa on May 30, 2017 at 4:42pm
For another slant on the subject - I am the aging parent and can tell how it affects me when my boys (now 40+) are seemingly in denial of my condition.(Parkinson's Disease) I was diagnosed 11 years ago, and it is developing very slowly so to most people I appear as a healthy woman who looks younger than her years (75) I still climb ladders, use power tools, drive and live independently. What they don't see is on the bad days, the weariness,aches and pains and the loss of capacity to remember things or concentrate on anything.
My sons have not read any of the pamphlets I gave them. Not interested yet. Have to wait for more brain cells to die.
Question: Would the Anyporters like me to post an occasional update of the journey I am on. I hope it will be humorous more than morbid, and it will balance the stories of Kerouac2 and Kimby
About a year ago I posted this in the "ageing parents" thread (#2224). Several of you here were interested and suggested a new thread be made, so here 'tis.
Time seems to rush past and what starts as a bit of inconvenience settles in to be a Parky stage. I'm still driving but try not to drive at night. I passed my licence test but feel less confident in the dark. Ditto using power tools...only if no-one else is around to help will I power up. I received a really good drill for Mother's Day but have not used it much.
I still scamper up 4-step ladders but find my arms can't carry the heavy hanging pots as easily and they overbalance me. Balance is one of the "Biggy" problems with Parky's, so many people lean forward and do a graceful nose dive, throw out their arms and wind up with busted wrists. I have found that as you start to fall, bend knees, stick bottom out and roll into a ball with arms around head...practiced it on my bed til I hope it will be automatic. Works for echidnas and hedgehogs...worth a try.
I'm not drooling ...yet, but takes ages to eat a meal, better when I can use a spoon aka "Mess Minimizer". One of the side effects of my meds has a tendency to wreck teeth...2 out last year and another to come out soon. Cooking is OK except carrying a very heavy wok with boiling liquids in it...lock the dog out and concentrate on wok. My hands and right knee are shaking most of the time now. When I have to do something fine motor, like threading a needle, the tremor stops for the duration. Knitting is a really hard thing now, but I am hanging in there.
I was interviewed for a doco about 50th year of car club event. It was when I saw the playback I realized my face has lost most of its expression and looks like a mask and my voice has become a soft monotone. These are classic signs and to some people the most depressing. When you meet a friend who can't smile at you and whispers huskily...you usually don't want to hang around and chat. I have become more stooped and have a tendency to shuffle when at home or tired. However, at the big National mini club party I was hoppin' and a-boppin' with the 30+ mob. Every one went outside to see some fireworks, DJ put on "Mustang Sally" (a fave) and I just danced in the big room by myself, remembering the 50 years of parties there. I still got the moves, Babe!
Aches and pains persist but mentally I am much sharper since I chucked one of the stronger meds and switched to Ginkgo Bilobar. In many ways I am thinking better altogether. I am about to cancel my trip to Zanzibar, I have better ideas and my Doctor is not in favour of me on my own there. She advised against my Tibet trip and I went anyway...big mistake, so now I take notice.
So that is a year...is anyone interested in another post next year? I am open to questions or PM messages
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Post by mickthecactus on Jun 24, 2018 11:09:55 GMT
This may sound odd but I really enjoyed that and would like to hear much more. Hearing how people overcome their problems is quite uplifting. Good on yer questa!
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Post by questa on Jun 24, 2018 11:49:45 GMT
I appreciate your interest, Mick. I've always been the kind of person who thinks ahead and tries to find solutions before the problems arise. It is good to see some of my strategies working out. I mentioned the hanging baskets...14 of them hanging in my garden on the timber beams of a pergola. When I found them getting dangerous...me on a ladder and suddenly having to take a 6kg weight on one side, I bought a pulley wheel and put a big strong screw near each hanging point on the side of the timber.. Put a loop of cord on the pulley to hang it on the screw and clip the basket with a length of rope that goes over the pulley and it lowers to me gently.
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Post by Deleted on Jun 24, 2018 12:18:28 GMT
It appears as though you are making the best of a horrid affliction Questa and I much admire your staminaan most of all your attitude which many people in your situation give up on.
My favorite aunt developed Parkinson's (back in the 1960's) and even though I was quite young at the time and had little to no understanding of what all the changes I saw were about (no one ever bothered to try and explain them to me.
She was a rabid gardener and I followed her every move. Whereas she was once able to put seeds in trays with ease and transplant seedlings into larger pots and eventually transplant them into the ground I witnessed over time how difficult this became for her to do and this is when I was able to assist her which was very gratifying for me and although she could be hypercritical of any deviation I made I know how much she appreciated it. She was a very proud woman and her flower beds were celebrated by many.
Much of what I know about gardening I likely never would have learned without her and unfortunately her handicap doing what she had always done on her own.
I wanted to ask you as you had posted quite some time ago about your struggle with giving up cigarettes.
As a former smoker I can appreciate said struggle and hope you have been successful with it.
Surely it can't be very helpful or healthy so, if you haven't stopped please keep trying.
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Post by questa on Jun 24, 2018 12:57:28 GMT
Oh Casi, I have not been able to quit for the simple reason...I enjoy smoking and don't really want to stop. I know all the reasons and they make me feel ashamed. The phenomenal price is now a dollar a cigarette but I have changed to the old "roll your own" cigarettes and make mine very slim. It is pure tobacco leaf with no deadly chemicals added and I put a filter in. I only get 4-5 puffs and they go out easily but it is all I want for a while. Of course it is cheaper but the hassle of making up a 'rolly' means I have long breaks with no smoking, not like reaching for a packet of 'ready-mades' absent-mindedly.
I'm such a fool, I know...but thanks for your concern.
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Post by kerouac2 on Jun 24, 2018 14:48:24 GMT
I am certainly interested. I don't know if it will reassure you at all, but even without any sort of diagnosed disease, I have started to avoid driving at night when possible and avoid doing plenty of other things... at age 65. There seem to be a certain number of things that one should avoid doing if possible upon reaching a certain age.
The only thing that surprised me in what you wrote was that it takes you "ages" to eat a meal. I am still a full speed eater and will empty my plate before anybody else quite often. (There are even a number of Anyporters who can confirm this.) Even if it started to get messy, I tend to think that I would still eat fast.
As I'm sure many people have already told you, it seems like the most logical thing to do it to fight the symptons to the best of your ability rather than surrendering to them. Something tells me that this is easier said than done.
Obviously, all of us wish you the best. I think that a lot of the medicine has become better, and with any luck, this should continue while awaiting a cure.
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Post by mossie on Jun 24, 2018 18:35:16 GMT
Very brave of you Questa to confess this. I had not given it any consideration, I like to say I do not believe in being ill, but you worry me as I am getting some of those symptoms which I simply ascribe to old age. Having now survived past my 86th birthday I consider I am well past my 'sell by' date, and should really just curl up in a corner somewhere and not be a nuisance any more.
But, just "Press on Regardless" as we were encouraged.
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Post by bjd on Jun 24, 2018 18:48:55 GMT
Qyesta, I think your description of getting along with Parkinson's is extremely encouraging for anyone who reads this, or especially, anyone who knows you. You must be a very strong person to force yourself to continue living as much as possible, despite not being able to do as much as you used to.
I'm sorry to read that you had to cancel your trip to Zanzibar. I know you were looking forward to it. What are you going to replace it with?
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Post by kerouac2 on Jun 24, 2018 18:51:58 GMT
I have noticed that my downstairs neighbour, who is about 15 years younger than I (I think), trembles very visibly. I don't know him well enough to discuss health issues except to be almost certain that it is not alcohol related. Some people have no luck.
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Post by mich64 on Jun 24, 2018 19:30:17 GMT
I am interested to read and learn about your form of Parkinson's Questa, it seems very different from the type my sister has.
My sister was diagnosed about 3 years ago and was walking up until about a year and a half ago. Her type is very agressive as she now requires 24 hour care split between her personal support workers, her children and her husband.
My brother-in-law is in the Military so fortunately his position provides them with additional medical benefits, her medications are covered and her wheelchairs, hospital bed, lift and other assistance devices were purchased with the help of the benefits and other Government assistance programs.
She is 56 and a smoker too and the doctor advised her to try to reduce but never suggested she quit. However, on our visit 2 weeks ago (she lives 4 hours away) she now has a type of hookah as it is no longer safe for her to hold a cigarette.
We learnt very quickly that there is a large variety of assistance products available that were very helpful at the beginning so she could keep up with things she loved to do such as baking, so many helpful gadgets etc.
Keep on dancing!
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Post by mickthecactus on Jun 24, 2018 21:27:37 GMT
Mossie, I think it was Churchill whose motto was “keep buggering on”.
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Post by whatagain on Jun 24, 2018 22:46:33 GMT
I find it extremely interesting to see how people cope with their fate. So please keep writing. We Belgians read a lot about Parkinson when it was said our king was suffering from it (Albert 2, father of actual king Philippe). But I know nobody who has it. On the subject of smoke I can't see why one should quit when around 75 - I don't suppose you are a chain smoker and I believe in small pleasures - at a certain age we can't surf or jump or have sex 4 times a day anymore so indulging in a cigarette or a glass of wine seems a small risk and a big pleasure. However my grandfather indirectly died of smoking. He fell asleep whilst smoking, put his linens on fire and died of smoke inhalation.
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Post by questa on Jun 25, 2018 10:39:09 GMT
K2, you raise an important fact...many of the symptoms of Parky's are pure old age starting to show up. As we age we forget stuff, make silly mistakes with things we've done for years and the physical body starts to crack up.Remember we were programmed to kick the bucket at mid fifties or so when no longer child producing. We have bought heaps of extra time but the price is we don't function like we did at 40.
As for 'fighting' the symptoms...takes too much energy which is better used elsewhere. I prefer to work around the problems and disarm them wherever I can.
Mossie, Not brave, I am me, not my disease. Numbers from the calendar don't mean anything, really. 86 years is a good age but I bet you are healthier than many 70 yr olds. Being sensible is better than all the pills. Reminds me of a saying you probably have heard before... "The first law of wing-walking is make sure of one hand's grip before reaching out with the second hand"
bjd, hey, I can't 'force myself,' I'm really very slack. I do the barest minimum with housework and remain one step ahead of the health inspectors. Zanzibar had to go because my back pain got worse and I can't walk or sit still for more than 20 minutes. I would have been flying for 20+ hours and sight seeing in steep roads. No Way! I have to chase up on the flight over Antarctica they used to have each year.I will keep you posted.
Mich, Absolutely every case of PD is different. It is one of the major markers of it. Most illnesses follow a certain path but PD has no pattern. I am still OK at 12 years, but some die after 6 months. One of the first signs is loss of smell but mine is as good as ever. Helpful gadgets are big business and I am inventing my own as needed. You delight me with the hookah...must get one!
Whatagain, At least one country has had PD experience. Great, raises public knowledge. A recent Pope and Muhammad Ali had it as well.Coping with fate is something we all do, all the time. It is normal for everyone to have 'shit happens' at some time, but I know that "This, too, will pass" one way or another. I agree with you about light smoking...my grandfather smoked until he was 96. I think if I was coughing or breathless I'd be more concerned. And what do you mean when you say 'can't have sex 4 times a day'...speak for yourself, young man!
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Post by whatagain on Jun 25, 2018 17:54:42 GMT
:-; can't wait to be retired !!
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Post by cheerypeabrain on Jun 25, 2018 18:14:00 GMT
Questa dearie it's good of you to be so frank. Sounds like you are being stoic and getting on with things...I hope that you make use of whatever aids and benefits you are entitled to? I'm filled with admiration. Bloody kids...
Mind you, maybe they DO read about Parkinsons and just feel that it's in your best interest that they don't make a fuss? Giving them the benefit of the doubt.....
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Post by questa on Jun 25, 2018 23:01:34 GMT
Yes, Cheery, My eldest son and wife have been quietly scouting out home services for me. Illness has not been encouraged in the family so we won't be fussing around much.
I am not one for all the sentimental or noble "words of wisdom" so beloved by platitude writers on Facebook, however I do have just one which cheers me up when needed.
"Always remember you are braver than you believe, stronger than you seem, smarter than you think and twice as beautiful as you've ever imagined" Dr Seuss
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Post by cheerypeabrain on Jun 26, 2018 7:53:07 GMT
Regarding the smoking. Son has struggled to give up and admitted this to his consultant when he saw him recently. The consultant looked pointedly at the nurse and didn't comment. After the consultant had left the room the IBD nurse said 'whilst we don't and can't condone smoking, some of our patients find it soothes some of the symptoms of crohns disease slightly' .....
Speaking to other patients on the ward when later he found that several of them were smokers and felt that it helped them...Mind you over half didn't smoke so that not a proven benefit...and tbh severity and type of symptoms vary tremendously...
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Post by mossie on Jun 26, 2018 16:48:47 GMT
I think it is counterproductive to worry old people about smoking, good to keep the middle aged smoke free, but after say 65 don't see the point of curtailing a pleasure. My mother died at 74 of cancer in her chest and used to get mad at doctors whose first question usually was "how many cigarettes do you smoke". She had never smoked in her life.
Of course there is always the old interviewers question, "Do you smoke after intercourse?". To which the answer should be "I don't know, I've never looked"
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Post by bixaorellana on Jun 28, 2018 6:24:57 GMT
Mind you, maybe they DO read about Parkinsons and just feel that it's in your best interest that they don't make a fuss? Somehow, this seems extremely probable. it seems like the most logical thing to do it to fight the symptons to the best of your ability It sounds as though you are doing this as best you can, Questa. I often wonder if, with certain diseases in certain stages, it wouldn't be more productive to try to keep the patient off medication, the better to chart any progression without having to filter out what might be medication side effects. You mention a couple of times problems that arose from medication, and feeling more in control once switched to natural remedies. I also often wonder if a diagnosis, albeit the doctor has to give it once consulted, might be a detrimental factor to the mental and physical well-being of the patient in terms of coping with symptoms that might well be the natural effects of aging. Mich, I had no idea about your sister. What a cruel and rapid progression. Only a little over fifty is very young indeed.
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Post by bjd on Jun 28, 2018 8:35:47 GMT
I'm not sure about your idea of not providing a diagnosis, Bixa. A Canadian friend of mine had health issues when she was about 50. After 2 years of being told to stop fussing because it was just menopause, it turned out to be Parkinson's.
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Post by bixaorellana on Jun 28, 2018 8:49:04 GMT
Oh, I certainly do not think the doctor shouldn't provide a diagnosis!
I was referring to the Catch-22 of doctor & patient needing to know what is wrong in order to treat it, vs. the fact that knowing that one has such&such an illness can be very demoralizing.
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Post by questa on Jun 28, 2018 11:49:23 GMT
By the time symptoms show up enough to make a clinical diagnosis, the patient has lost thousands of neurons already. If PD is detected early there are meds which slow down the loss and preserve the neurons. Other meds act to take the place of lost neurons and stimulate the brain to keep up with the manufacture of the failing endorphins. (This is a very rough description...it is an amazingly complicated)
There is actually a lot of support from hospital clinics and community groups. These pick up on people who may need counseling. I had diagnosed myself before I saw my GP and told him straight off. Saved him having break it to me. I have stayed away from PD group stuff because I don't want to see what may be my endgame. I don't gawk at car crashes either.
November each year the 4 Fridays are when the PD specialists do the tutorials for the student doctors. 8 professors each see 8 groups of 15 keen learners for 17 minutes per group.I am a volunteer 'demonstration model' and as the Prof is telling about symptoms etc, I am doing the actions with it. They ask me all sorts of questions, and get some practice manipulating my wrist and elbow to feel the difference from normal.I have 'worked' with 3 of them and they give me lots of info. If I am feeling OK I will skip the previous pills so they see the symptoms better or sometimes I do a bit of 'voluntary enhancement'. It is a stimulating but exhausting afternoon...The Hospital supplies free cab for me and I receive a certificate from the School of Medicine at the end.
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Post by questa on Jun 28, 2018 12:14:33 GMT
I also often wonder if a diagnosis, albeit the doctor has to give it once consulted, might be a detrimental factor to the mental and physical well-being of the patient in terms of coping with symptoms that might well be the natural effects of aging. Doesn't this apply to any serious illness. Boils down to the old dilemma...do you want to know how you are going to die? Should your GP tell your family? It is a shock and I avoided reading or learning anything about it for 2-3 years. I am OK with it now but steer clear of any discussion about the dementia that sometimes accompanies PD. Most PD people get severe depression and this has to be treated as well. bjd 50 is young for PD...referred to as early onset. Obvious Doc wasn't looking for it. Gets missed a lot...not by 'my' students though!
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Post by Kimby on Jun 28, 2018 19:59:50 GMT
Questa, I’m so glad to see you started this thread. I don’t know what percentage of the population gets PD, but I know several who have it already, and as we age, I suspect it will only increase.
My Dad had (at least we THINK he had, though we did not get an autopsy to confirm it) Lewy Body Dementia, a Parkinson’s-related illness, that begins with earlier dementia than in the “normal” form. Patients with both diseases have Lewy Bodies in their brains, but levadopa does not help those with LBD. Dad had some trouble walking and standing up when he was 87, so we took him to a “motion neurologist” (who knew such a thing existed?) who suggested LBD as a possibility. Other symptoms are vivid hallucinations, and Dad spent a lot of time “fishing” in his living room: casting, reeling in, unhooking and throwing back the “small ones”. He also rambled on, apparently talking to long-gone loved ones that he could see, but no one else could. Fortunately, the bad part of his disease lasted only a few months, and with in-home 24-hour caregivers, he was able to die at home under hospice care. I am glad your disease is progressing slowly and you are able to maintain a good quality of life so far, if not the life you’d envisioned.
Thank you for sharing.
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Post by questa on Jun 29, 2018 0:15:26 GMT
As the "baby-boomers" age, research intensifies but they still can't find a yes/no test for it or a cure or way to stop the progression. They have found it is not just one disease but a collection of different clusters of symptoms that are now being identified and named. Lewy Body Dementia is in the news as this is the PD that Robin Williams had...fast onset and progression to all the symptoms.
An early symptom is a sleep disorder that results in vivid dreams and the person acting out the dreams as if awake. I told my GP in 1992 I was having these dreams but at that time the connection had not been made. Since I have been on my meds...no wild dreams, just talk to myself most of the night.
In Asian countries (so the Asian student doctors tell me) they have a simple accurate test for PD. While the doctor engages the patient a nurse unobtrusively counts how many blinks of the eyes per minute. While the average is about 15-20, people with PD rate around 11.
Kimby, do you think your father was happy with his fishing and friends? I think it may have been more distressing for you and his carers than for him.
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Post by Kimby on Jun 29, 2018 4:24:28 GMT
Before he lost his intellect, he was depressed. Probably at Mom’s loss of intellect (vascular dementia, I think) Losing her companionship while she was still alive was very tough on him. As he began to lose his grip on reality, he may have been less depressed, but I don’t know if he was “happy”. He was very “busy”, fidgeting and agitated, jabbering at night and hardly sleeping, trying to climb out of bed and falling on the floor, covered in bruises... Good thing it went fairly quickly. Though I’d rather he had “normal” PD and was around longer.
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Post by questa on Jun 29, 2018 5:26:24 GMT
I don't know about other countries, but in the last 4-5 years ads on TV etc for in-home care have multiplied like rabbits. Once the province of churches and charitable organisations who mainly used volunteers, it has now Big Business with qualified, paid carers doing anything from washing the dishes, walking your dog and gardening to medical appointments and the odd 'day out'. It is not cheap but the govt is subsidising the program as it is much cheaper than hospitals and govt homes and preferred by the clients. We have had a couple of nasty incidences of residential homes being closed for elder abuse, theft etc and people don't want to go into a Home. Being able to stay in their own place with carers, family and friends is top choice. I think soon I will get help with changing bedding and vacuuming the house...both are painful and tiring jobs.
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Post by Kimby on Jun 29, 2018 13:43:42 GMT
In our experience, most caregivers working for American caregiving companies are overworked and underpaid. Many are recent (legal) immigrants, or young Americans. Though very expensive, the government does NOT cover these services, although they can be included in the medical expenses that are deducted from your total income before it is taxed.
We had several really great carers, some we didn’t like much at all, and one young lady who actually stole money from the debit card that was to be used to buy groceries for Mom.
There was constant turnover so we had new caregivers almost every time I came to visit. However the last two gals who cared for mom became part of the family, and we are still Facebook friends 2 1/2 years after her passing.
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Post by kerouac2 on Jun 29, 2018 15:41:50 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.
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Post by mickthecactus on Jun 29, 2018 16:15:22 GMT
I’m glad I live next door to my daughter and my son is just a mile away.
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