CBD help, very early stages

My husband was diagnosed last year with Parkinson's Plus / CBD.  It's in the very early stages and symptoms seem to come and go. Right now he's been falling every few days but it isn't because of balance.  He says when he goes to put his right leg down it's like it goes into a hole and he just goes down. We've been so very fortunate that he just has gotten cuts above the eyes and forehead as well as his knees. When he gets up he can walk as though nothing has happened. His neurologist just says to use a cane or get a walker but it's so hard for him when he feels he can walk fine. Anyone out there have any thoughts.

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  • A friend got me a kind of stylish cane for a present and I use it off and on. I hate looking like a patient, which I would if I used a walker, or one of those metal canes, and that's what I told my primary care doc. We had a long talk about self-esteem vs.injury prevention. Both are important in my view.

  • My husband does have one of those stylish canes but he uses it more like Charlie Chaplin and I am constantly nagging him. Hopefully it won't take a bad fall to wake him up.

  • What about a hikers walking pole?  That's probably why I've never been bothered if I have to use mine   when my hips play up as I don't particularly associate it with disabililty. 

  • Hi paddyfields, That's a good idea, too. I'll try that and maybe he'll use it more than the cane.

  • Hi AnnieD. I don't know if this will help him. If he starts to walk in a slightly different way; namely, instead of walking as he always has, he starts to actually tell his right leg to lift off the ground and move it consciouslly forward and place the heel on the ground while consciously holding his right toes up in the air. In this way he will be walking differently. He might also want to do the same with his left leg, instead of walking subconsciously.

    If you would like to Skype me at - john.pepper.1 - I will help him understand what it is I want him to do. If he does this without having falls it will be because he has taken concious control of his movements and if he has Pd as you say, it falls into line with y understanding of how to take control of many of our nrmal movements to enable us to live a normal life again. I live in South Africa, which is 1 hour ahead of GMT.

    If you are wary of this advice then look at chapter 2 of Dr Norman Doidge's book, The Brain's Way of Healing'.

    Good luck

    John

    John

  • I too had the strange falling, I had to focus on each step to make sure my leg was set up to take my weight. I only fell when I was in autodrive. So this makes sense to me. 

  • Hi Shelly. Remeber, practice makes perfect. The more you practice the less you will fall.

    John

  • Hi Shelly, then this is something that has happened to others. Up until now I couldn't find anything about these strange falls.

  • Thanks, JohnPepper, Will try and see how it goes. I tell my husband that it seems like a disconnect from the brain to the leg so this sounds reasonable. Will also check out the book.

  • I was recently diagnosed with Parkinson's. But have had that same falling experience for about a year now. It's like my leg is disconnected with my brain, it doesn't move forward when I'm walking or it doesn't set up to take the weight of my leg. The endocrinologist started me on B12 shots because I was severly deficient last October. I don't know if that's what is helping or not. But I haven't fallen in a month or more. I didn't know if the falling was from the PD, the RSD in the right leg or due to the synovial cyst in the coccyx region of my spine. I also see the chiropractor every 3 weeks to relieve the spinal fluid pressure from the cyst.

  • My husband use to think he could walk until one day whil coming back fro the GP . As he walked he got shorter and shorter.  His legs were crumbling Beneath him . I couldn't hold him up and had to shout for help .

    Luckily a postman and another young chap were walking behind us , they picked him out and carried him home between them .. 

  • Hi cabbage cottage, that had to be horrible. 

  • Pardon my ignorance, what is CBD?

  • My best guess: CBD = Corticobasal Degeneration

    (The symptoms seem to overlap tremendously with those of PD.) 

    Reference:

    nhs.uk/Conditions/Corticoba...

    SYMPTOMS OF CORTICOBASAL DEGENERATION

    People with corticobasal degeneration (CBD) develop a range of difficulties with movement, speech, memory and swallowing.

    The condition tends to develop gradually, which means it can be mistaken for another condition at first – such as Parkinson's disease, dementia or a stroke.

    The symptoms typically become more severe over several years, although the speed at which they worsen varies.

    Some of the main symptoms of CBD are outlined below. Most people with the condition won't experience all of these.

    EARLY SYMPTOMS

    CBD typically affects one of the limbs at first. This is usually a hand or arm, but sometimes a leg.

    Problems affecting the limb can include:

        a clumsy or "useless" hand

        muscle stiffness

        shaking (tremors) and spasms (dystonia)

        loss of feeling

        feeling like the limb doesn't belong to you (an "alien" limb)

    Some people also develop problems with walking and co-ordination . . . .

  • Wow. That sounds like a lot of us.

  • Thanks

  • Hi Roberto, Dumpeklin has it right. See answer below.

  • Hi Roberto, Dumpeklin has it right. See the answer below.

  • I too  do not know what CBD is......help. Thank you!

  • Hi Enjoysalud, For a possible answer, see the post above yours.  This will have to do until AnnieD1749 can tell us for sure.

  • Dumpelkin, thank you!  Doesn't sound pleasant.

  • hi all  i have epsp which is life threatening bu t  i do nt see  like that  at all

    i had  a very low time b4  alst xmas and really  thougthg  of

    ' going tio switzerland' but have now got over that and  now try and get somehinrg  out o f  each day ......and  id does sseeem to work

    ;lo; l jill

    xxxxxxxl

    plz exvcuse the  typing it's getting worse!

  • Hi jillanf6,

    Have you ever tried speech recognition? 

  • hi my speech has got much quieter   so it isn't an option i m afraid

    lol jill

    xxx

  • There is a form of magnesium, Magnesium L. Threonate which enhances memory and can help to slow neural degeneration.  It was developed with Alzheimer's disease in mind but memory loss/dementia is certainly part of Parkinson's & CBD.  

    curezone.org/forums/am.asp?...

    A bit tired here and am crashing.  I found this article which may offer some alternative therapies:  

    perpetualcommotion.com/a/Pa...

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