Poorly mind: I wonder if I can offload... - Parkinson's Movement

Parkinson's Movement

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Poorly mind

Johnmo
Johnmo

I wonder if I can offload some of my depressed feelings. Just hopeless. There's too many things, projects that I've started over recent years that I no longer have the capacity for. As soon as I try to do things my arms turn to jelly. I can't finish anything because there's too many ancillary things to do. My mind can't assert itself. Could be the lost dopamine feedback. That's what they say. Things lie unrequited. The violin, the pottery, the enamelling, the pond, the sports car. Tools and things that came with me when I downsized. I've replaced the stolen electric bicycle with a better one but it's wrong. Feels too big. Not thought it through. When something gets stolen it's difficult to start again. Thanks for listening

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Some people have your symptoms and yes it could be down to Dopamine deficiency but it may be other neurotransmitters out of balance. What medication are you taking?

Sorry you experience - like a lot, if not all, of us - these feelings.

It seems common in PD. I was medicated and? after like two years and a lot of different molecules, they found one I tolerated. Not life changing, but such a relief. I do that European style : medication along with "talking cure". It really helps.

All the best, JohnMo.

John,,,,, I agree that your present situation must be a bit depressing, (been there, done that), but hopeless, NO!!!!! Most of us have been through similar times, the inability to complete simple projects,

hands that don't work, eyes that can't see properly. It tends to be discouraging, trying to make things, but here is a piece of advice from one who has been where you are. If you wish to make something that will improve your life, make a friend. Each one is more precious than anything else you can build.

A Friend,,,,ronn

Meditate daily

Xenos
Xenos in reply to jeeves19

There are many types of meditation. Is one of them better than the others, in your knowledge ?

No. The most important thing BY FAR is to do whatever form you choose daily. Maybe twice daily actually. Bit like learning a musical instrument! I find deep breathing whilst watching thoughts come and go rewarding.

Xenos
Xenos in reply to jeeves19

Thanks Jeeves.

How long do you meditate ? Do you use a cushion, a special place ?

Details welcome.

I’m a failure and a wannabe tbh. I start then stop then start again then stop. That’s why I know regularity is the key and one day I’ll sort myself out. I have heard instances of Parkinson’s remitting due to meditation. Oh to have the self control needed eh? I’d recommend Davidji’s Secrets of Meditation available on good ol Amazon. Best of luck.

Not sure if I'm meditating or just feeling sorry for myself. Another train trundles past my window. I lie awake for ages trying not to think of all the things I could be doing, aware that it's a beautiful morning out there in my garden.

I'm on 50/12.5 levodopa/benzeraside. Take 2, 3, 2, 2 though I never quite get to the bedtime dose for reasons unknown. 350 to 450 mg a day. I don't know if that's a lot. And a 1mg rasagiline. I get hypo, Brady and A kinesia in my arms and rigidity in one hamstring. Walking is unpleasant hence the ebike. I do yoga and I'm trying reiki. My friend has gone away for a week to a balloon festival. I've got to fend for myself.

Hi Johnmo !! I feel similar........living and (still) working in a foreign country. First half hour, hour awakening fit and full of things I wanna do.....than slowness and stiffness takes the overhand...........

But HealthUnlocked helps a lot (of course "just" online friends, but still).

Short saying : check out your Mg levels , try to use extra Mucuna

mucunaparkinson.com/parkins...

(I wrote shortly to that doctor, waiting for answer).

and when you can affort it financially check for Hg, lead, arsenic in blood (better urine)

and put them away......

Keep on going !!!(I will also try to do that (last two weeks increasing of my symptoms and I don't know why......)

P.S. : are you living in England ??

Johnmo
Johnmo in reply to JANVAN

Yay got up. It's England. There's white envelopes, I expect everyone gets them. They really set me off. It's strange, I can dig a 250 litre hole for a pond, it's hard but I feel good about it.... Give me a white envolope to open and I go to pieces. I read about the brain mapping intentions for fine motor control, Dexterity vs freezing, it is so irritating, a new kind of pain, not tremor, jelly fingers. I'm building up the anxiety now. I've got to do something with my old car. The Birch seeds have blocked the drains, the run off from the soft top. It's got to go but it's one of those impossible things that jelly brains can't deal with. It's so good to hear of others who are stuck on the fine detail of living

Johnmo,

There's always the strategy of reading Healthunlocked - of the difficulties others are having.. and thinking "Thank God I don't have that...." which is really a glass half empty view of the world... and you run the risk of adding fuel for "I'm gonna get..."

There is an inherent resilience in people, the ability to bounce back or accomodate. I often find inspiration in seeing people cope with symptoms worse than mine, and just really respect and admire them.

Parkinson's is a life thief, and is there with the potential to grab some of you when you haven't done anything to deserve it. And it sure isn't easy to see a chunk lopped off now and again.

I just read your reply to Johnmo - thanks for that, I found it a great post, hope he felt the same. Suffering Socks (love my online friends)

I'm still here. Sometimes, thankfully I suppose, life's other difficulties rise to the fore and obscure the mind's obsession with Parkinson's. Poorly leg, poorly back, asthma, and general exhaustion. And I have eventually discovered that it's not my fault that the ebike they sent is the wrong size. Talla is Spanish for size. Talla: LA is large size. M is what I ordered. That's not my jelly mind after all. I'm having to walk the streets again.

Is it still hot?

Johnmo
Johnmo in reply to Astra7

Hi Guys...

Quite warm. I was going to say how I'm quite angry about how several things turned out. Just fettled the Mazda. She's my pride and joy. I can't let go.

Oooh my friend is on messenger.

Back in a bit

She's gone, to the shops.

I was feeling quite ill. I've had to stop. Had a cold beer. Prolley have a nuvva. Sigh. Should be up in town if I'm drinking cos ill just slump if I stay here on my own. So far the alcohol molecule is therapeutic. Should I be remembering something about that. Might get changed and get the ebike out. Food! Forgot food. Oh dear

I'll have to ask about that. It's obviously a powerful treatment. If it's so good there wouldn't be pd. I remain skeptical of all treatments. I'm supposed to be under a neuro. Having been told it's pd because of my gait and the cogwheel ing. If I hadn't known I'd just be doddery. Sometimes knowledge creates the illusion of truth where there is none. And that engenders anxiety. I'm inclined to think it's all in the collective mind. I'm trying to do my bit.

Whereabouts are you in the U.K. John? I’m Brum.

I am in Amherst New York.

Knaresborough

johnmo- take a look at the video for Rose Gold, a product

that contains 8 ingredients. when you watch the video, note

what each problem caused by PD. The video is very instructional, whether

or not you decide to try the product.

Chuck (diagnosed 4 yrs ago)

My husband called his 30 year journey a "series of indignities". I share your frustrations and I hear anger. I share that as well. My son was diagnosed with PD with dystonia when he was just 27. Even after my husband's death in October 2016 from PD with dementia, my anger may even have grown.

It's a raw deal. Examine your choices, count on family & friends, and do your best. Work hard to find some satisfaction in each day, maybe even joy. Impossible....no, just very, very hard to do most days

Yesterday, friends at the alottment open day. Big struggle picking French beans, jelly arms, is it dystonia. No tremor. Just this now constant control problem, restless arms all night. Had home made plum wine, I can't have drink, I pretend it's OK but regret it. Trying to explain my pd to someone who knows mnd sufferer, my symptoms are invisible except when I try to do things. I can't describe it. My ebike cuts out at 15mph, by law. It's like that. Pd is the law. Diminishing.... Been feeling angry and fearful, vulnerable. Taunts from drunks who want to steal the bike. Looking forward to yoga. Baak P, that was nice, thankyou. And Parkit, but can't find Rose gold

MehmetKutlu
MehmetKutlu in reply to Johnmo

It should be Restore Gold. Available at wehaveparkinsons.com.

The product has a sound scientific basis.

JGreer
JGreer in reply to Johnmo

Restore Gold.

Xenos, I like the European style. Talking helps understanding.

Janvan, trying to keep going today

Xenos
Xenos in reply to Johnmo

"Talking helps understanding"... and sometimes more than that, with a skilled shrink.

Hi John. We live not too far away from you in Bingley. I can only tell you about my husbands regime.

He was diagnosed with PD almost 25 years and was only 44 at the time. He has never suffered with depression during this time and we think that may be due to Selegiline 10mg that he has taken for 23/24 years. Rasigiline is the newer equivalent. He takes two Sinemet (blues) 10/100 mg and a half sinemet CR 125 (slow release) 3 times a day. We have found the larger Sinemet, 25/250 too strong causing sleeplessness, night fears and reckless behaviour. Regularly he has a drugs holiday and doesn't medicate til 12 noon because as he puts it,he likes to be himself.

We go abroad 3/4 times a year which is really beneficial. Luckily we have friends with properties we can go to. He had DBS in 2005, reluctantly given to him because he had the compulsive behaviour problems caused by the dopa-agonists. This has helped really well for the tremors but ruined his walking. If you can tolerate the dopa-agonists they work quite well and now the side affects are known any problems can be monitored.

The one thing we would not be without is a Parkinson's nurse. They are the ones who are dealing with it on a daily basis and offer really good advice. We are going for a review of medication etc to our nurse tomorrow.

I hope this helps you. Simply through experience we have learnt that too much medication can be bad. And don't forget, some people are finding relief with CBD oil.

Thankyou Jeanne beanie. I can feel empathy with what you say. I'm struggling, hurt my back just getting out of bed, feeling exhausted, useless, because I'm depressed. I suppose I'm cross with myself for not doing more in life. I feel I'm impulsive/compulsive, confused about my health and the pd prognosis. Wary of psychosis, delusion, anxiety, reckless spending. Just being too ill to carry on seeing friends and continuing to reciprocate their support.

It's probably time to review the drugs. I'm not getting the sense that they're therapeutic, though I'm physically worse if I stop taking them. The sense that I'm no longer able to pursue goals worries me. The suppose dopamine reward system isn't playing its part. I tried to call the nurse but I'm put off by the answerphone. I left a message but they don't call back. I saw the neuro but it was a rush, I couldn't think, she seemed to override my concerns. I've had the occupational therapist and associated support interview but I don't think I make the right noises. I need more practice, more confidence.

CBD, high dose (im) thiamine, all the others I can't remember, aren't NHS regime, unmonitored. I did try some vaping CBD but couldn't get a significant dose to experiment. Had some Mary Jane and felt mostly ill. Sigh.

I've traced the unhappy thigh muscle to its insertion (inguinal?) and applied the magnesium oil with the rolling pin. As with the yoga and the reiki, it's fun trying. Could do with a good fast walk to work it all in. But I'm stuck. Listening to Aretha. And I saw a beautiful young fox down my garden.

Hi Johnmo - I suffer from depression and anxiety, just visited my psychologist today, really lovely woman who I relate to so well. I felt much better and able to face things so I would heartily recommend it to help you with your depression. I suffer from carer fatigue (my hubby was dx in May this year) but I've had 10 yrs of caring through 2 open-heart surgeries then heart failure so was told to do something for myself,such as a trip away from it all. I got a mental picture of you listening to Aretha and seeing a beautiful young fox in your garden, it made me smile! Music and animals both make me very happy too! A mental picture of you applying the magnesium oil with a rolling pin really made me laugh, so you made somebody happy today Johnmo. Suffering Socks

Aww, thanks suffering socks. I want to do pd stand up, might be good if I didn't freeze

Been to our new nurses today and they are so positive. After 23 years they have suggested he tries a complete new medication regime that he has agreed to. Instead of taking tablets all together in one go 3/4 times a day he is going to take them steadily through the day but less at a time. You really need to speak to your Parkinson's Nurse. They help the most.

My desk is a disaster, my closet is a disaster, my "to do" list gets longer but I let it go and cut myself a break. For 60 plus years I had it together, So I don't now. I'm doing the best I can.

I focus on riding the stationary bike while watching your British TV show. In fact thats what I'm going to do now.

Ken

PS - I don't sweat it if my punctuation is not perfect either. LOL

That might be something you can do Johnmo - PD stand-up. You wouldn't freeze down here in Queensland, Australia - it's quite warm. Haha! Hubby went to a different skin cancer clinic today and the doctor was so good at putting him at ease - when he stuttered the doc. copied him and made jokes a lot - he had us both laughing and hubby's shakes almost stopped. Such a great bloke. Suffering Socks

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