Have PD Symptoms Started

Living with Parkinson's Young Onset Parkinson's
1

Hi Everyone,

Hoping you can shed a bit of light on something. I have not been to the doctors yet I am planning to go if issues persist,

I am 32 Male, Roughly two weeks ago I woke up and got out of bed to find my walking was atrocious. I had a feeling of that ‘almost-cramp’ (do anything and it will be cramp) in my calves and couldn’t bend up straight. I was stooping and it took a good few hours of walking about to regain posture.

Since then I have had quite severe backache in my lower lumbar and have found myself walking different, it was more or less identical to the shuffle gait and bradykinesia with stiffness of muscles & rigidity. Walking very slowly and not able to run. In my mind I want to run but physically couldn’t… Arms not swinging when walking. This week, I seem to be walking okay again now (80% improved).

On the first day I started walking like this I had no tremor at all. A couple of days later I found my right hand had a tremor but my walking had improved a little.

I have had trouble thinking some days. If too much is happening at once it was like information overload.

The tremor then went yesterday completely and today has returned in both hands albeit worse in right hand. It seems to keep coming and going. Just when I think I am back to normal I start unintentionally walking stooped or this tremor comes back.

I have been suffering severe depression for about 4 months. This however seems to now be lifting, fortunately.

My question is, is there any similarities to others of you with YOPD, does this sound at all like the first symptoms you had?

I do a fair bit of heavy lifting day to day with my job, but to be fair I used to do weight lifting not so long ago and never get bad backache. it just seems more than a coincidence that I have not only back pain that may or may not be causing me to walk stooped but also these tremors keep coming and going. One evening the lumbar pain subsided and seemed to move up my back almost to just below my shoulders, very strange.

Not expecting a diagnosis on here of course, just someone to talk to about the symptoms and similarities and what next, just wait a bit longer and see how it pans out?

Are there any other tell-tale signs I should be looking out for? I have heard that initially, PD symptoms can come and go, I wonder how long can they go for before returning that would be a big help to know. Are we talking hours, days or weeks?

Thank you,

Alan

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Hi Alan,
I was diagnosed at 39 by a specialist after a few years of visiting my GP with various minor symptoms. My GP just wasn’t expecting a relatively fit and youngish person to have Parkinson’s and put things down to stress even though I’m not a stressy person. Eventually I was referred to a neurologist who told me after the consultation that he had diagnosed me as soon as I walked in. He did this by observing my gait, one non swinging arm and my blank expression… When I told a work colleague, he told me had already guessed that I had Parkinson’s because I walked like his wife who also had it. My point is that you should see your GP as soon as possible and ask to see a neurologist who specialises in Parkinson’s so that you can be assessed by people who are familiar with the various symptoms. My early symptoms were as above, my gait, the non swinging arm and lack of expression. I also had a bout of depression, a frozen shoulder, a tightness in my face that my wife rather lovingly referred to as ‘rat man’ as it exposed my top teeth but which I preferred to call my ‘Elvis sneer’. I also got cramp in my right calf when walking. Before I knew about the non swinging arm being part of Parkinson’s, I described it as if I had broken my arm and was holding my arm in a certain way to protect it. So go to the doctors asap and hopefully they will find out what is causing your symptoms.
All the best wishes,
Gary.

1 Like
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Hi Gary,

Many thanks for your reply,

Interesting to read your post. When you first started experiencing your first symptoms, can you recall if you had lower back pain at all?

I can’t help thinking I may just have trapped a nerve, but why that would then give me hand tremors sounds too unrelated.

Yesterday I noticed significant improvement all round but was taking cbd oil throughout the day, but today I thought I will have nothing and I have started the shuffle gait again with lumbar pain.

Must say about a month ago, thats when I first had a tremor in one hand whilst just sat watching TV, thought absolutely nothing of it besides ‘oh hello’. Lasted a few minutes.

Also, how long between your initial symptoms if you can remember, i.e. would a day pass with no symptoms and then return?

Only asking as at this early stage this is what I am tending to find, so if so it’s something I can relate with,

Best regards,

Alan

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Hi Alan
No, I never had any back pain, I did get aching across the back of my shoulders and the frozen shoulder. As for the symptoms, at first they would be sporadic and were brought on by tiredness. My wife noticed the early changes in me before I did. I only really knew something was wrong when I fell playing football on a hard surface. As I was fell, I could not understand how I wasn’t able to correct myself and stay upright, it felt like slow motion and I imagine it looked a bit like the referee falling after being pushed to the floor by Paolo Di Canio all those years ago (apologies if your not a football fan or too young to remember) but falling forwards instead of backwards. The symptoms became more regular as time wore on until I started on Parkinson’s medications.
Hope that helps.
Regards
Gary.

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Hello AJ just read you concern, I started with a achy hand, but everyone is different. If I knew then what I do now. I’d drink lots of water, take steady exercise and then see how things go. I get a lot of back pain, but that’s becuase of the tablets and how they work, I think! It’s a complex condition. However, I was a fifty before and the one thing I regret was not keeping it up, it could have helped me for a lot longer before going onto med and getting a diagnosis. Back to basics on healthy living, you may find your body gets better by itself. J

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Hi, have just read all your pieces. I am not young, but your description of some of your back problems rang a bell with me. I have a stoop and cramp like sensations - I have been diagnosed with a Parkinson related little known back condition it is called Captocormia. Perhaps you would like to talk this over with your Parkinson Consultant.

I was originally told this back problem was my discs eroding - it took a Neurologist who had seen this condition before to diagnose it. Keep pushing for some help with your back. If you are not happy go back and back

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Hi had loads of scans, I think med related, I have a very strong back, or used to. Pain is a pain, I just need to loose a stone or so it helps. I like cake too which doesn’t, all in a good days work. Take each day, any more and I’d struggle. Big hug

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Sucks doesn’t it, we keep going, but some days it’s ruddy hard. Big hug

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Thanks for the ‘big hug’, it made me smile. Big hug back.

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Hi Jules47, If your back does not improve, perhaps physio would help - I went and it did help in the beginning, but then it got too bad. My neurologist told me sometimes Botox injections helped as it does when given for dribbling. But, in my case, due to the length of time it took to come to light , I would need that much Botox it would kill me !!!

At the beginning it came and went, the stoop was only minor and the ache manageable but over a period of time got worse and exercising stopped working for me, despite going back for more physio.

The first Neurologist, I have to say, was not that good. However, my Neurologist and Parkinson Nurse I have now are brilliant and I am very lucky. At present I am awaiting an appointment for a specialist ‘muscle’ physio for the muscle cramping in my stomach which is gradually moving up my stomach past waist line and now reaching just below my ribs. This also makes my stoop worse as I can’t make myself stand up straight.

I do so hope you get some help. It brings you down when you have constant pain. Its bad enough fighting PD every day.

Fortunately, the PD Gym I go to twice a week is brilliant and we all come out on cloud 9. JD the Physio who takes the class, knows how to lift us and makes you feel you could take on the world. Perhaps a PD Gym class would help you and just think, the calories you burn up means your piece of cake is not so fattening ha ha.

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Just read the " broken arm" syndrome.
This was one of the first things that I noticed. Along with the small writing.
Also the balance going when playing football was a shock as my balance was always very good
Hubby

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Nice to have a hug, even if virtual👍 Big hug again😃

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Hi and thank you everyone for your replies,

Quick update:

I have been fine all this week, I have been able to walk normally again all week, until today. It is very strange. I did some gardening and shovelling soil for a couple of hours and since I have been walking stooped and very slowly. Muscles are aching like crazy. I am a normal, otherwise fit person usually.

No tremors currently at all this week.

Surely if it was a trapped nerve I would be in agony? There is no back pain.

Will keep everyone updated. A week without any symptoms though I definitely thought I was ok again.

Take care, Alan

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I have a question for those with PD.

If you can think back to the beginning symptoms, how frequent were they. Like the tremors, were they there all the time, or did they come and go for a bit every so many days/weeks?

Had tremors again today but only for around 30 minutes, walking still iffy, can’t run still either, its a really strange feeling. I go to run and its just like slow motion, ends up a brisk walk.

I can put up for now in the hope its just a bad back, but if it goes any worse I shall have it checked out I think.

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My first tremors were just briefly every week or so and then gradually increased in frequency. Movement issues came much later on.

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Thanks for your reply Singing_Gardener, much appreciated,

Those who have (or have had) depression as well, was it before or after physical symptoms started?

I ask as my depression has subsided hugely over the past month just around the time when my gait has changed and my tremor started to come and go; but was terrible the months prior to that.

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I don’t suffer from depression but had terrible anxiety and panic attacks for years before any other symptoms. They have got much better since I’ve been on medication but from your account maybe this was due to PD progression rather than the drugs.

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I don’t get depression, but, have just been away for a week to Northumberland. I have noticed of late when in a car, I am getting so anxious all the time - I see cars are too near, cars might cut in, I think my husband is driving too fast, etc, etc. so you can imagine a long drive was a nightmare.

My other half is a very good driver and is also patient with me but this anxiety in a car is getting worse and worse. Sometimes my heart races. I see my Parkinson Nurse this month so will mention it to her.

My back has also got worse of late - am almost at a 45 deg angle most of the time - have found laying on the floor or bed face down does help the cramp like sensations in my stomach which, in turn helps my stoop.

Have now got an appointment to see a specialist muscle physio - next month. Hopefully they will come up with something.

Think positive, try and find a PD Gym Class - really does help - just by being with people like yourself and not catching people sneaking a look at you and your twitches or stoops, etc.

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Hi Everyone,

Just wanted to update you all… For the past month I have been great. No symptoms at all. Until a few days ago, I could feel my stiffness coming on again (shuffle gait), fairly intense pain in my lower body muscles making it difficult to walk, especially upstairs.

Then on a separate occasion my hand tremor came back completely out the blue. I have decided to share a video. Any thoughts would be appreciated. Tremors have since subsided once again. Its very strange.

https://youtu.be/e4On457otIs

Will report back with any developments. Thanks all.

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Sorry to double post, here is another video:

https://youtu.be/nTzHbSS9z2s