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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 22-08-17, 08:48 PM   #1
LECS
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Default Keep moving if you can

For those that don't know me I am HD positive and have many symptoms which I find a constant daily battle and I am feeling tired, battered and bruised and I regularly want to throw in the towel, it's been such a long slog. Despite going to bed calm, I wake up every day an absolute monster with so much anger within me which I am no longer able to contain, it like having Tourette's, I am no longer able to chose my words carefully it all just tumbles out. Being a monster with a capital M impacts severely on anyone who is brave enough to come into my space. With Gary unable to cope and our rows escalating to crisis, I now take my monster to the gym. I very reluctantly leave my home every morning and because I can't contain my venom I no longer walk with Gary to the gym I meet him at the door because I am unable to go in on my own. I get on the treadmill for 30 minutes which I hate and I push and push until the monster is gone and afterwards I can on the whole, stay quiet and calm for the rest of the day. Going to the gym has not done anything that I hoped it would, like make me walk faster, stop me from getting out of puff or make me feel better but if it gets rid of the venom and gives me the ability to speak to Gary in a calm way then it's got to be worth it. I also do 15 minutes of very small weights after my 30 minutes treadmill and because of my slowing walking pace, I have increased my walking and walk as often as I can. If I sit for any length of time even for a short coffee stop, I find nothing wants to work and I have to push myself off until I find my walking rhythm again and I'm away. I'm not in any pain I just can't do it, it's if everything switches off whilst I'm inactive. I've lost count of the number of times I've told Gary that I'm not renewing my gym membership or I'm not going tomorrow, I find it one huge chore. My mum was falling and since going to the gym I have not, my balance is still off and I lump into anything and everything but I don't go over. I do believe though that my physical ability is much worse when I have periods of inactivity. I like walking through the park best, I like the smells and the air and the trees and sounds of the children playing and the dogs and boats and as I am able to still walk independently I feel blessed and grateful for that. I don't enjoy much but on our walk back we stop off at the coffee van and I have my ginger tea and sometimes a chocolate cookie and the world seems a little better and Gary might even get a smile. Best wishes to you all. Lily
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Old 23-08-17, 09:32 PM   #2
Trish
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Default Re: Keep moving if you can

Hi Hun

Thank you for sharing that.
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Old 24-08-17, 10:37 AM   #3
Allan
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Default Keep moving - or else!

.
Hi Lily

That really tells the long, hard story of your daily, weekly physical activity [trials and tribulations] and how you are able to overcome some of the cruel symptoms of this disease.

I get it - that the exercise doesn’t make you physically fitter but it allows a degree of calmness and serenity to enter your day. The exercising of muscles and other body parts gives your brain something dramatically different and positive to work on - to compute the “improvement” in other areas and not allow the hd-symptoms to take root.

Your daily exercise is your medication. Whilst the majority of hd-individuals calm themselves with medication such as Clonazepam, Mirtazapine, etc. you, Matt Ward [of kick-boxing fame] and the few hd-runners and cyclists keep the symptoms at bay by the great efforts you put into your physical exertions.

I can also understand the differences in the time before the gym and the time after. I'm sure we all take ages to prepare our own hd-person for the day ahead, whether it's a medical appointment or shopping for clothes, footwear, etc. and then, after the event that was full of tension and anxiety, it's easy-peasy - all worked out - on the way back home.

Flipping well done - and keep it up.

… and Gary must be really chuffed to be getting regular smiles.

.
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Old 26-08-17, 09:02 AM   #4
LECS
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Default Re: Keep moving - or else!

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Originally Posted by Allan View Post
.
Hi Lily

That really tells the long, hard story of your daily, weekly physical activity [trials and tribulations] and how you are able to overcome some of the cruel symptoms of this disease.

I get it - that the exercise doesn’t make you physically fitter but it allows a degree of calmness and serenity to enter your day. The exercising of muscles and other body parts gives your brain something dramatically different and positive to work on - to compute the “improvement” in other areas and not allow the hd-symptoms to take root.

Your daily exercise is your medication. Whilst the majority of hd-individuals calm themselves with medication such as Clonazepam, Mirtazapine, etc. you, Matt Ward [of kick-boxing fame] and the few hd-runners and cyclists keep the symptoms at bay by the great efforts you put into your physical exertions.

I can also understand the differences in the time before the gym and the time after. I'm sure we all take ages to prepare our own hd-person for the day ahead, whether it's a medical appointment or shopping for clothes, footwear, etc. and then, after the event that was full of tension and anxiety, it's easy-peasy - all worked out - on the way back home.

Flipping well done - and keep it up.

… and Gary must be really chuffed to be getting regular smiles.

.
Thanks Allan. I really struggle to explain and understand myself and your second paragraph does it exactly. I climbed a mountain yesterday, I cant remember ever doing so before, not ever being of the sporty type, a school report once quoted 'she moves rather heavily' which says it all. This steep incline was rocky for a good part of it and I had to think about where to put my feet and how to raise my leg high enough and how to find the energy to push up and I concentrated so much that I felt overwhelming calm throughout. The signpost said 30 mins but it took me a couple of hours with a few stops to admire the view. I was with Gary and Alfie so I didn't have to find the extra concentration to speak as well, I could just concentrate in putting one foot in front of the other. I was singing and laughing on the way down which also required enormous concentration to keep my balance and feeling a little giddy so something must have happened, they asked if I had put anything in my water which I hadn't! I was tired afterwards and again it didn't improve my walking speed and I crawled home but the calmness remained. Wouldn't it be great if I left my 'monster' up the mountain! I'm now planning to find more mountains!! Best wishes to you all Lily
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Old 26-08-17, 01:55 PM   #5
Crystal
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Default Re: Keep moving - or else!

Quote:
Originally Posted by LECS View Post
Thanks Allan. I really struggle to explain and understand myself and your second paragraph does it exactly. I climbed a mountain yesterday, I cant remember ever doing so before, not ever being of the sporty type, a school report once quoted 'she moves rather heavily' which says it all. This steep incline was rocky for a good part of it and I had to think about where to put my feet and how to raise my leg high enough and how to find the energy to push up and I concentrated so much that I felt overwhelming calm throughout. The signpost said 30 mins but it took me a couple of hours with a few stops to admire the view. I was with Gary and Alfie so I didn't have to find the extra concentration to speak as well, I could just concentrate in putting one foot in front of the other. I was singing and laughing on the way down which also required enormous concentration to keep my balance and feeling a little giddy so something must have happened, they asked if I had put anything in my water which I hadn't! I was tired afterwards and again it didn't improve my walking speed and I crawled home but the calmness remained. Wouldn't it be great if I left my 'monster' up the mountain! I'm now planning to find more mountains!! Best wishes to you all Lily
I always feel you explain yourself and your struggles with HD so well Lily and are a true inspiration. I do hope you were singing 'CLIMB EVERY MOUNTAIN' as you did so. I have a lovely image of that to hold on to!

Crystal x
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Old 26-08-17, 11:35 PM   #6
LECS
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Default Re: Keep moving - or else!

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Originally Posted by Crystal View Post
I always feel you explain yourself and your struggles with HD so well Lily and are a true inspiration. I do hope you were singing 'CLIMB EVERY MOUNTAIN' as you did so. I have a lovely image of that to hold on to!

Crystal x
Thank you Crystal, I was actually singing she'll be coming round the mountain when she comes etc and as I can't hold a note, thankful that no one could hear me!
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