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Still here...

Hi all

just to say I’m still around, and sorry I haven’t been out to play for quite a while! Did have a good chat with Don a week or two back when he very kindly phoned me.

several reasons, some good, some not so good.

On the plus side our house alterations have liberated me so that I spend a lot of time actually doing music rather than sitting in bed or in my armchair twiddling my thumbs.

On the not so good side, it seems I have a malfunctioning pituitary gland, which means I am undergoing investigations to try to find out why, and to balance my hormones with various replacements.

Back on the good side, the hydrocortisone steroid and thyroxine they are giving me has made me feel more active and less prone to crippling fatigue. Due to start testosterone replacement too.

Not so good- usual sporadic bowel and bladder issues. Also seem to be losing my fingers- dexterity and sensation. I can’t play my stringed instruments anymore. I shall soon have to face up to selling some of them.

Good side- lovely weather, light evenings. And we have had a ramp put in so that I can get myself into the conservatory to enjoy it. No more impossible threshold!

Now off to listen to the radio play that Pat spotted.

love

Kev

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Hi Kev glad your still around.

J x

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Hi Kev glad to hear you’re enjoying your house alterations. Lovely where I am today just a tad too warm. I go to Turkey soon! What on earth made me book it

Jan x

Hi Kev,

Good to hear from you. Shame you haven’t been too good. I have been having thyroid problems as well. Crippling fatigue and feeling so down. Not to mention eating all the wrong things. Upped the thyroxine, and I am more able to cope but I suppose it will take a while. Just have to be a bit more patient. Not one of my strong points.

Glad your enjoying the results of your renovations but sorry to hear about your hands. Iv got it in one hand but hey ho!

Beautiful day here today. Started going about barefoot indoors again its the only way to keep cool.

Mags xx

Hello Kev.

It’s quite tough realising that you’re losing the control from your fingers. I have memories of struggling with a boogie woogie left hand on the piano and a pesky D chord on the guitar in front of a class full of children. Now all I can do is a bit of writing and I haven’t done it so much lately as I still haven’t got round to putting the Sibelius 6 on my new laptop. Being close to the southbank has helped (apart from their crappy lifts)

We’ve just had a wetroom done and I can use my scooter now the weather has improved. But as you know, everything can be a struggle sometimes. Hope your pituitary gland thing can be sorted.

Good to see you posting again. Best wishes, Steve.

Hi Kev, good to see you on here!

Lots of ups and downs though. It’s not easy is it?

Have you seen an OT for your hands? There are exercises they can give you. You can buy ‘therapy putty’ on internet. I got some on recomendation of OT… it’s a bit like plastercine & you sit and squeeze it and pull at it when watching telly. Keeps fingers strong.

Also OT said to get a piece of string and sit tying knots in it and then untying them. I also took up needlepoint (but that might be a step too far for you!).

Did you hear the play? I thought it was pretty good.

Keep in touch Kev… and hope you can get some of this stuff sorted… btw have you tried LDN for bowel & bladder issues?

Pat xx

Nice to be back folks.

Steve, I’m still able to play keys, in that I was never a pianist but can play simple parts and then edit them in midi. I’m aiming to shift the emphasis of my music from being mainly acoustic instruments with a topping of virtual keyboard sounds, to completely keyboard composed and recorded, using all the virtual instruments I can afford! I think it’s going to be long rambling ambient pieces from now on!

The putty is a good idea, Pat. I have a spongy hand exercise ball (which I think was a pet toy!) but the putty looks more functional. Tying knots a good idea too, but I won’t be rehairing any more violin bows, which was always one of those jobs where three hands would have been useful.

As for manipulating glycerin suppositories, I am very much afraid I may have to hand over duties to Mrs A. She not happy bunny.

Sorry, too much information.

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Sorry to hear you’re struggling Kev, it’s always a blow when another part of the body seems broken. Hopefully between the drugs and exercising you regain some normalcy. Take care and let us know how you get on.

Cath x

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Hi KeV

Sorry you are not so well at the moment, hope things improve for you, nice to see you back though.

I also have a squeezy ball thing, think it’s called a stress’s ball, but good to try keeping your fingers and hands mobile. Also I sit and squeeze and relax my hands , into sort of a fist shape and bback again, might be worth a try.

Dull and drizzly today.

Pam x

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It was great to have a chat Kev and nice to speak to your wife. Sorry your looking the ability to play but I expect you will fill your day in your play room doing something else.

Have fun mate XXX Don

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Nice to see you back Kev but sorry to hear you’re having a rotten time.

I can’t recommend LDN highly enough for bowel and bladder issues…for me it has also helped with skin issues, sorry the correct name has popped out of my brain…itchiness, soreness, crawling ants etc and I’m convinced it has also improved my walking a little. There’s also a school of thought that suggests there’s a possibility that it slows progression… I know it’s only a possibility but if there’s the remotest chance I personally think it’s well worth it.

wishing you all the best,

Nina x

Hi Nina,

Sorry to but in somebody else’s thread but I was wandering how to get LDN. It’s just if it is through the gp I am not sure if I would get it as they are not very clued up on ms.

Mags xx

Hi Robin, I’ll answer your question.

Very few GP’s or neuro’s will prescribe it as it hasn’t been recommended by NICE for MS… but because it’s a drug that was developed in the 80’s the patent has ran out which makes it very affordable.

Go to a website called ‘The LDN Trust’. They have a list of private doctors you can contact. You will need to send them (or scan and email) a letter from neuro which proves you have MS.

That prescription then goes to Dicksons, a chemist in Glasgow, and they send the drug through the post.

I don’t take it. I tried it and didn’t have a good reaction, however most people take it without a problem. You’ll find all the info on LDN Trust website.

Hope this helps.

Pat xx

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Thanks for that- saved me asking too!

K x

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Thanks for doing that for me Pat!

Nina xx

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Hi there

I’m beginning to think MS really is about balancing the good and the bad and that really is it

I started blogging as so much has happened! I’m now an RRMSer after all, got on a trial then that took a tilt but hoping to start DMD in a couple of months.

Sonia x

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Good to have you back Kev,

I’m glad your house alterations have made a difference…We are about to have alterations done in our house…well they said it could take a few months and we will have to give a small contribution because Lee works, part of me is pleased, but i feel its moving a bit too fast, all i wanted was a wet room…but the lady assessing me said they would make a ramp leading around the back of the house and put patio doors on our bedroom so we could get the chair inside… the front door is a bit tricky…the house is on a slope and has steps up it…usually i park the chair under the garage and try to get up to the door with rails often i end up falling and crawling up. I so much want to get better… that part of me feels …Stop …i’m not wanting this…Iv’e managed inside, some days are worst than others, i usually fall every day several times…but good at landing…I get scared that its all moving too fast…In my head I’m still running around being “super mum” Lee says my technique for walking is better but he thinks its just because I’m used to my own house.

Michelle x

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Stick with it, Michelle. The couple of months disruption will be difficult, but you should find the results empowering.

i had begun to feel that our house had become a hostile place, so difficult to move around. Now I’m back in love with it again! I really hope you can get the same benefit.

Kev x

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