My name is Marg and I live in Adelaide, Australia, I am 63 and was diagnosed in 2012. I don't usually write on these things as I find it a very tedious way to hold a conversation, But I heard something today that made my blood boil. That severe muscle contractor that's a cramp gone mad, is called, by the specialists " stiffness " How dare they use a word for it that is so dismissive and innocuous.
And while I'm at it, many of the non motor problems are not given the attention they desperately need, Do you Guys have any idea what it like to have no interest in any thing at all, that's what happens when dopamine is not getting through. Our mental state should be your first concern. and doing something about the pain there is always pain, never stops. " Movement Specialists " That's the least of my problems,
And guess what, I am a public patient, on a centre link new start allowance, They tell me I'm not disabled enough to get a disability pension, My Neurologist, refuses to have anything to do with centre link, no help there, The people at centre link have no respect for the medical profession.
Before 2012 I was working full time, Now there is no way anyone will employ me and I still have 3 years till I can get the age pension.
But there is a positive side to all this, I keep busy, I volunteer 3 days a week at an opp shop, I love It, I get along well with staff and customers, My dexterity is still very good, I make and repair Jewellery for the shop, And I'm developing my own skills in this area and starting a small hobby business, It's slowly coming together.
I still ride my bike to and from work 3 days a week, can't walk for very long, and I'm still active and mostly positive.
I've spent most of my working like as a disability carer, and have a lot of knowledge on the human body and how it works, even my GP trusts that , so when I want to try something a bit different, she's happy to send a referral letter to the appropriate specialist.
To cure the apathy and depression I have a testosterone implant put in once every 6 months, It works, but I had to research and arrange it myself. and I've got my life back.
BTW, I'm pretty sure that the hot flashes ( not flushes ) and profuse sweating, are caused by gas wind and constipation and the pain in my lower back and hips are referred pain from the same cause, I proved it to myself recently when I had a colonoscopy and was almost pain free for 2 days after the the procedure, empty bowel, no pain.
I have 2 questions to ask.
1.Of the left handed people with Parkinson's, do you have trouble with writing? I don't and I think it's because I'm left handed. If I'm right I'll explain in another post.
2. A bit of levity. What is the funniest and or strangest symptom you've had?
Cheers, Marg
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Hi there. I had a hot sweaty menopause. It was awful. I remember sitting in front of my boss with sweat dripping down the side of my nose. The sweating/ hot flushes I have now - well I can’t split the difference. In hindsight I also feel that it hindered my diagnosis. No sooner was I out of the menapause than I had the symptoms s again. Health professionals would not take it seriously. All my clothes are machine wash tumble dry. Can not wear my clothes for more than a day. It has improved slightly since my course of Vit D
I was through menopause and I've found the 2 very different, but during menopause I was on hormone replacement therapy medication, so those symptoms were very mild. Btw, don't know if it'll help but I have vitamin B12 shots every 2 months, and they help a lot, especially the tingling ( feels like lots of tiny ants crawling around in my feet) isn't nearly as bad ( the ants are just about asleep and the're no longer moving up my legs)
This is what I mean about PD symptoms, the craziest one I had was before I was diagnosed, first time, I was showering a client who had MS and was not able to walk, so she was safely in a shower chair.
I suddenly felt extremely nauseous and just when I was about throw up, I suddenly sneezed twice and then was completely normal again, the whole thing lasted about 30 seconds, ( my client said that I suddenly went as white as a sheet). That was when I began to suspect, something's not quit right.
Like when the doctor asked if I had lost any feeling in my feet, I said, sort of, it feels like I'm wearing thick socks permanently, the lack of feeling is only on the surface
3:30 am I can't sleep much sleep either Cheers Marg.
compulsive sex. Only with my wife. I was taking a large amount of Requip and my wife handled the pills and got in her system. we had sex 2 to 5 times a day for 2 years damn near killed me. But what a way to go.
HI Marg - how nice of you to show us your picture!
I am not left handed but that is my affected side. I realized I was neglecting use of my left hand and losing dexterity. So now I do as much as possible with it.
In fact if you just type Parkinsons into Science daily. Com there are some fantastic and very interesting articles on developmental research. I personally think the gut brain connection is the most important that and recognising the part that autoimmunity has to play. I would look at some gut membrane healing courses like those offered by Dr. Axe at his domain or fix your gut. Com is another excellent resource. I've experienced first hand the neurological problems that can occur from taking macrolydes and not having enough Probiotics in the gut. Hope this helps in anyway. Loved your post was dismayed by the rather pithy response to it. Really wish you all the best and congratulations for keeping moving active and the quality of life you still have. You also seem to be open to exploring and trying new things so this might be a good angle if you haven't already. God bless. Tom
Marg, I think you are wonderful. I agree with Tom and the pithy responses. I don't have the same problems as you, I am 64 and diagnosed last year. I have been on Stalevo and too tired to do anything, so I asked my Neurologist to help me reduce the dose. I have gone from 800mg a day to 400mg. I feel fantastic. I've got my energy back. I intend to reduce further. I think you are great in that you are pro-active in your treatment. I also respect you for your volunteer work. If I lived near you I would give you my junk jewellery to remake and sell. Why not advertise in the local shop for people's broken jewellery? You could then rework it. I wish you well for the future. Are you aware that if you walk as fast as you can for one hour every second day, your symptoms should regress. John Pepper has written a book on it and I can claim it works. I wish you the best of luck for your future.
thank you, we had a busy day at shop, donations have coming in nearly all day yesterday and today, very small shop even smaller back room ( sorting), l live in a beach side suburb, that is for the most part, full of wealthy retirees, so the quality of the goods that come in is very high. It was too much to sort, so most goes to head office ( big warehouse ) to be redistributed around our other shops, so couldn't have a proper look through, 3 hr shift, not enough time, but I managed to get all the jewellery, most of the earrings need a good clean before they go for sale in the shop. there was a lot, this time, and I get to keep all the bits and pieces that are not saleable. cheers marg
can relate to so much that you've said My mental dispossition at the moment is "I can't be bothered!" :- to do my hair properly, shave my legs, brush my teeth properly, get out of my PJ's etc..... a friend got annoyed with me and said "Well, why don't you just dig a hole and bury yourself!?!?!" my reply..... "Can't be bothered!"
My GP put me onto Efexor-XR 37.5mg. I felt back to my normal self, happy and relaxed - except, hmmm how do I put this. I don't get excited when I am supposed to. My hubbie gets disappointed that I no longer reach the crucial point. I have stopped taking it yesterday to see if it is the problem.
Anyway, back to the jewellery, I meant to pull apart old stuff and recreate new items to sell. Then you could sell on Gumtree or at markets. Just a thought.
I had a really bad childhood, and I've been on Efexor for the past 20 years, had to up the dose recently. I'm taking 220mg.
Ask your doctor for a referral to a gynaecologist and ask him or her about a testosterone implant. That should make your hubby happy, and you too.
Jewellery, I've made sun catcher mobiles and a lot of my own creations, I love getting old jewellery, I used to get a lot from auctions but can't afford it now, but I still have a lot of broken bits and pieces left over from donations that come in at work. I love making new stuff
My husband is right handed and has trouble writing. Delay the Disease taught him to practice writing really big exaggerated letters, and that seemed to help...seems you may be able to relearn to write somewhat. The funniest thing we encounter is him yelling out in the night, sometimes complete sentences! We have a good laugh about it the next day. I don't know if that is from the meds or the Parkinsons. Thanks for chance to share something to make us smile instead of worry or complain!
It's probably the Parkinson's that makes him yell at night. My husband use to do that but all he would yell was obscenities. He would start acting out his dreams at night and fell out of bed a few times and broke his foot from one of the falls. We now have a bed rail and it works great. Just something you may need to look out for.
I have very similar symptoms to you. I am extremely stiff, but the cramping is different and very painful. In addition, I have apathy. I've had a difficult time finding a good neurologist in the Charlotte, NC, US, area. Does anybody live near here or have any suggestions of a good doctor nearby?
Cramps, For me, If I haven't had enough water/fluids that day I'd more prone to cramps that night. I get them in my feet and calf muscles. I noticed that I don't get them every night, so I purposely had a low water day, and yes I got cramps that night, so the next I drank a litre and a half, no cramps.
Try this, say the cramp starts in my toes, I'll gently move the toes in opposite direction and continue moving them around just a little, so the cramp can't set in, keep my mind on them while I'm doing this. and then I tap a hand on my body somewhere else at the same time, the taping distracts your mind a bit from the cramping. it's hard to describe this in words. I can usually stop them. or I take another madopar if they're too bad.
If my hand cramps while I'm working or writing, I'll stop and give them a 5 Minute break, then opening and closing a few times to work the stiffness out. that works too.
Remember this your are the driver and I helps a lot if you know whats under the bonnet and that your brain is misinterpreting signals, tell it off, it may sound stupid, but that works too sometimes.
Cheers Marg, I find your straightforwardness most refreshing! I have felt the same way about the muscle cramps. The pain and stiffness is not fun to deal with, for sure, and it does seem like the specialists sometimes don’t really understand. You seem to be betwixt and between, concerning your pension. I was once in that position too, just 3 years away, and running into medical problems, so I can empathize with you, for sure. I, also, had the same type of discomfort from constipation, that was temporarily relieved, when I went through the colonoscopy process. PD seems to be different, for each person, dependent upon the loss of dopamine- neuro-degeneration area, within the brain. I have been diagnosed with PD, and Cerebellar Ataxia, plus Post Polio Syndrome ( I had non-paralytic polio as a child, that affected my walking). So things can get a little complicated with me. I am not left handed. I’ve always had good handwriting, but it became, cramped, small, and illegible when I had bad PD symptoms ( before I was put on levodopa). My funniest/oddest symptom is when I’ve felt pins and needles sensations on my face, back, feet, hands, legs and arms, all at the same time. That does not happen all the time, just once in a while. Very weird! Usually, I just have some peripheral neuropathy in my feet and hands. Cheers and best to you Marg!
Yes, cycles , I get a particular symptom, sometimes more than one, It's there for a while, days or weeks at a time, then it goes away, like the pains in my legs and hips, felt like my joints were too weak to hold me up, that pain went away but they come back and sometimes slightly altered. round and round in circles
Hi Marg. I live in Gladstone in the Mid North just 2 hours from you. I enjoyed reading your post and admire your attitude. I was diagnosed with PD at age 38 and I'm now aged 55. Up until now I've maintained a reasonable quality of life. Kept physically fit but had to stop one of my medications because of side effects. Nowadays things don't look so bright. I've just begun to check out the PD forums and I find them both informative and comforting. Its nice to know that there are others out there that share our ailments. An untapped source of advice and information. Oh yeah I'm another who yells out in the night. Dreams seem so real that I begin to audibly act them out, much to my wife's amusement. I like your photo BTW
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