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Dudes Son
25th October 2018, 01:12
Interesting read

http://www.asahi.com/ajw/articles/AJ201810150034.html

Hope everyone is doing ok

Dudes Son x

Boiler68
25th October 2018, 02:34
Hi Mark

Hope you are keeping well..it's hard not to think of your dad as I often drive past a property services company in Salford called DUDE Ltd..it makes me smile. I liked your Dad's humour and miss his presence here. Best wishes to you xxx

Dudes Son
25th October 2018, 10:31
Hi Mark

Hope you are keeping well..it's hard not to think of your dad as I often drive past a property services company in Salford called DUDE Ltd..it makes me smile. I liked your Dad's humour and miss his presence here. Best wishes to you xxx

Hi Boiler, great name for a company, yes the silence is deafening without him even though he could not speak anymore.

Better Crack on as he would say.

Thanks Mark

Lynne K
25th October 2018, 17:57
Thanks for the link Dudes Son. An interesting article indeed. I hope that this is the start of a shortish research journey. That Parkinsons drug must have already gone through patient safety trials so hopefully they will be able to fast track double blind ALS patient trials. I'll keep my ears and eyes open. Lynne

Deb
25th October 2018, 19:31
Thank you for the really interesting link, Mark.

I have read some of your Dad's posts. He obviously had a fantastic sense of humour.
Best Wishes to you and your family,
Love Debbie

Dudes Son
29th October 2018, 14:24
Your both welcome.

See if they can prescribe it here for Restless Leg Syndrome?

Fingers crossed everyone.

Mark

TIANDB
29th October 2018, 23:16
I have had Ropinirole recently prescribed by my Doctor. Small 0.25mg to start, I intend to maybe go up to 2mg in a few weeks if well tolerated ? My legs are very weak and interfere with my beauty sleep Ha.
I will take as recommended just before bedtime as it can cause nausea especially when first introduced. I will report if beneficial.
Here is more hoping, Best luck all TIANDB

Dudes Son
30th October 2018, 20:58
I have had Ropinirole recently prescribed by my Doctor. Small 0.25mg to start, I intend to maybe go up to 2mg in a few weeks if well tolerated ? My legs are very weak and interfere with my beauty sleep Ha.
I will take as recommended just before bedtime as it can cause nausea especially when first introduced. I will report if beneficial.
Here is more hoping, Best luck all TIANDB

Very interesting was your Dr aware of the findings in the article above? I know for sure that my Dad would have give it a shot if available.


Mark

TIANDB
30th October 2018, 22:10
Hi DS.
My Doctor looked the drug up when I suggested a trial. I have fast onset legs, arms and bulbar. After seeing it on this and other forums and after some research I thought it might help and as I also have sleep problems associated with my legs he agreed. I hope it assists some ?
Then we all may know and also my Doctor if he ever gets other ALS patients. Take care all.. TIANDB

Jer788
10th November 2018, 05:47
Hi TIAND, I have also had it prescribed by my doctor at 0.25mg recently and have found to be a bit nauseous. I'll also up the dosage if possible.
best Jerry

Fru
12th November 2018, 12:13
I read and shared the article on this but have been refused this drug for my husband on the grounds that it is not licenced for MND. Fru

Ellie
12th November 2018, 12:34
Fru, it's licenced for use in RLS - Restless Leg Syndrome - which some people with ALS develop.

Love Ellie.

TIANDB
12th November 2018, 12:55
Hi Fru.
If it was your MND consultant that refused try your Doctor or vice versa. I had to talk my Doctor into it well slurr him into it ha.
It is not an expensive drug and you start on a really low dosage 0.25mg and slowly build up. My legs are easier to manage while in bed since taking but early days as yet. I am just up to 2mg taken before sleep that is the recommended for restless leg although you can go up to 4mg ( parkinsons users can go up to 24mg ). Take care.

Fru
12th November 2018, 14:01
Thanks TIANDB, I am seeing my GP in two weeks time (that's the wait here) and I will have a go at getting then. Fru xx

TIANDB
12th November 2018, 14:29
Most welcome. I have an e-mail contact with my Doctors due to my voice issues and confined in my first floor apartment. I seem to get quicker service that way although the only medication I am on from the Doctor is Ropinirole ( 13 Days )
Best Luck.

Fru
28th November 2018, 13:01
Hi TIANDB,
No problem getting Ropinirole and starting low. Got one month at 0.25 and I am to get in touch in two weeks. How can we tell if this is any good? or whether it is interacting with any other drugs currently being taken?
Fru x

Fru
12th December 2018, 15:44
Just letting you know that 0.25 is well tolerated and the dose has now been increased to 0.5 from today. Nothing spectacular to report apart from that I have asked someone I know to check out the Japanese professor who wrote the paper. I'll post the info on ropinirole later.
Fru xx

Terry
12th December 2018, 17:18
Hi Fru,

I hope that it helps in anyway. All the best.

Love Terry

PS, apart from growing horns that I saw at the Cambridge Christmas party

Ellie
12th December 2018, 17:56
Great he is tolerating it so far Fru, hope it continues as the dose increases xx

Fru
13th December 2018, 00:30
Thank you for your support. As promised earlier here is some further reading for anyone interested to follow on from the first post on this thread xx

https://www.webmd.com/drugs/2/drug-4468-4041/ropinirole-oral/ropinirole-oral/details
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2542495/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2685238/
https://clinicaltrials.gov/ct2/show/NCT00329602

Fru
14th December 2018, 14:27
Hi everyone
This is what my friend says...

I have taken a brief look at their publication (attached). I think they did a good work and it has been published in a prestigious journal in our field.

The only problem I have is that it is too early to make those claims. This is because, in vitro experiments in the laboratory do not always translate when performed in vivo (in living systems).

But their paper is an important piece and they may proceed to perform some clinical trials which will give a laudable outcome.

Caution!! their experiment is a bit complicated for non-scientist!!!


So, this is where we are and I am working on how to put the attachment on here.

Best wishes Fru

Fru
14th December 2018, 14:36
Okay, it's a very long and complicated looking paper and very much over my head. If anyone would like to see it please pm with email.
Best wishes
Fru x

Fru
21st January 2019, 20:53
Here's my report on Ropinirole for 'restless legs'
Ed tolerated 0.25mg with nothing to report, then 0.50mg and that was okay for about 3 weeks with still nothing to report, then the chills set in and asthma seemed to be worse. Stopped all meds for a couple of weeks and now fine. He seemed happy on the Ropinirole and talked much more than usual and had more interest in things in general but it didn't help his legs.
The chills could have been a virus and Ed does use an inhaler and sometimes a nebulizer but it was agreed that Ed should stop taking the tablets if anything was different or if he seemed worse.
He gave it a try!

Terry
21st January 2019, 21:40
Thanks Fru and Ed;

Difficult to say about if it's the meds but you couldn't risk continuing especially if his breathing is affected.

Love Terry

Fru
21st January 2019, 22:33
Yes Terry
Asthma like side effects were on the list. This was a problem but it is winter and everyone with MND is different. It's hard to tell but we stuck to our agreement. The tablets didn't seem to be helping.
Love Fru xx

Ellie
21st January 2019, 23:42
Sorry it didn't work out for Ed (& you!)

Does he have RLS or was he trying Ropinirole for ALS in general?? Do you think his form improved because he was doing something, so to speak?

I ask because I have RLS and take Pramipexole, which I find works very well.

Love Ellie.

Fru
22nd January 2019, 01:41
Hi Ellie,
Well, to be honest, nothing is improving at the moment. Ed's hands arms and upper body are affected and he is becoming weaker. We are going for respiratory check up again soon. Legs are absolutely solid. Trying to keep feet warm. Off food. OT coming next week. Bed and mattress arriving tomorrow and now at the end of using Molift raiser so new one coming shortly. This should hopefully help my back. Will talk to GP about something to help Ed for stiff legs. Any advice gratefully received:)
Love Fru XX

Ellie
22nd January 2019, 14:35
Sorry Ed's progression is continuing apace Fru - it's a v difficult stage he's in at the moment.

Any idea what's replacing the Molift? From afar, I hope the OT is considering a sit-to-stand hoist, rather than a full-sling hoist, just because Ed's legs are strong, albeit due to spasticity. It doesn't really matter that his arms are weak as the sling supports his torso, but he needs to be able to sit up.

It's this "functional spasticity" which allows me to still do standing transfers. I take Baclofen, the go-to antispasmodic med, but the trick is to land on the right dose and achieve a balance between function and comfort.

I add Tizanidine, another antispasmodic, at bedtime as my spasticity is worse in bed because I don't move.

Love Ellie.

Ellie
23rd January 2019, 18:20
Fru, I forgot to mention that Heat Holders socks are very good for keeping feet warm. They are quite thick but are 4.5 tog.

I also like the men's Heatgen thermal socks from M&S. I find my feet fare better when my body is warm and I wear M&S women's Heatgen thermal long sleeved T-shirts everyday now as a base layer. They do men's too (and long johns, which I haven't tried!) They aren't sweaty like some thermals are and are thin.

Any idea why Ed's not eating much - fatigue, constipation, sheer effort?

Love Ellie.

Fru
24th January 2019, 02:08
Hi Ellie,
Yes, things have been a bit difficult! Ed is just exhausted and low but this goes in phases. The Molift sit to stand, is fine for the time being I think but Ed has to psych himself up for each transfer and there are several each day. Then he has a rest. He is worn out with sheer effort. I look on it as functional spacicity too. He is frightened of his knees giving way and I assure him all the time that he won't fall during a transfer. Some days whatever I say doesn't do much good.
Thanks Ellie, Ed is taking the Baclofen again. He sopped it before because he was hallucinating. I think he should stick with it for a while as it is the GP's preferred choice. We will see how it goes. Ed doesn't move in bed either. I have been getting up to turn him.
I think Ed gets cold because he doesn't move around much. I will look up the socks, thanks.
This afternoon he had his first proper rest for ages. The bed arrived this morning! Well its a bit crowded in the room now as I have a put u up in there too. Never mind.
Ed just doesn't feel like eating. Swallow is fine. He is supposed to have two shakes a day. Sometimes he has one. He is having small regular meals and snacks. He has what he wants when he wants. This means that he might just have soup and a roll to which I add neutral shake stuff. He has a little of whatever I make but doesn't like a plateful. He had half a plate of hot pot tonight with sprouts. I had the other half. Sometimes he just likes a filled baguette. I keep pot noodle type things in for those sort of days, for me.
I think the bed will help him a lot.
Love Fru xx

Kayleigh
24th January 2019, 16:06
Hi Fru,

How are you and Ed? Hopefully, you are ok and Ed is feeling a bit better now that he has got a new bed.

Like Ed, I don't have a very big appetite these days, and so have smaller meals and snacks throughout the day rather than big meals. I also have 1 nutrition shake a day.

It is good to hear that Ed's ability to swallow is good, but just in case he does need to increase his calorie intake, I thought I would share with you how I increase my calories with smaller meals and snacks.

I use butter, full-fat milk, cream and mayonnaise, instead of low calorie options. I find that individual pot desserts such as rice pudding, chocolate mousse, custard, cheesecake, and trifle are good as high calorie snacks and they don't take very much time or effort to eat.

Sometimes, I have a small ready meal with some veg, and I pop some butter on the veg for extra calories. If I have a pasta meal like spaghetti bolognese, I put some grated cheese on it. I also like cheese spread, Nutella or smooth peanut butter on bread or toast. If I have stewed fruit or sponge puddings (sometimes I get individual puds that can be microwaved), I always add custard, cream or ice-cream to them.

You probably already know about these ideas for increasing calorie intake, but I thought I'd share them with you, in case any of them are useful.

I have to admit that it's taken some getting used to, having to go for the higher calorie options - because in the past I've been a regular member of slimming clubs, and had to watch my weight by going for the low calorie options!

Hopefully, Ed is finding his new bed comfortable and is able to get a good night's sleep. I hope that you are able to get enough rest and sleep as well.

Love and best wishes to you and Ed,
Kayleigh x

Terry
24th January 2019, 16:50
Hi Fru,

When you eat slowly and don't have much of a appetite, a small plate of hot food is much better. Even if you give him a third of a normal helping it will remain hot and he will probably moan its not enough. Just blame me, laugh and get some more.

A electric over blanket might be good especially if it's on a remote plug that he can turn off and on easily.

My bed room is quite small as well but it has double doors into it.

Love Terry

Kayleigh
24th January 2019, 17:21
I agree with you Terry about the smaller portions. I have to eat slowly because my swallowing is not as good as it used to be. Sometimes a children's size ready meal is a good portion size for me - and I never have any problem eating a yummy chocolate mousse for afters! :)

Love
Kayleigh x

Kayleigh
3rd February 2019, 18:41
Hi Fru,

I hope that Ed is feeling a bit better now and that his new bed is comfortable for him. Hopefully you are getting enough rest and sleep as well.

Love and best wishes to you and Ed,

Kayleigh x

Fru
4th February 2019, 09:26
Hello Kayleigh It's been a tough week. Molift raiser wasn't enough to support Ed and he slipped through. Used the Elk with a friend but Ed gets in terrible panics. Arranging for an Xray. Bed bound since last Monday night. NHS intermediate care coming in twice a day but can't do much as no equipment to move Ed. Awful chest. Local hospice wouldn't have Ed for respite while we stabilise things. I think it's going to be another busy day. I will start a new thread on update. Have a lovely day everyone
Fru xx

Kayleigh
4th February 2019, 14:32
Hello Fru,

I am so sorry to hear that things continue to be very tough for you and Ed.

It is such a shame that the hospice won't have Ed to stay, as it sounds like some respite care would be ideal for him at the moment. You are a wonderful wife, always busy caring for your husband, and it sounds like you could do with more time to rest. Hopefully, the hospice will be able to offer some respite care, at some time in the near future.

It must be very frustrating that although the NHS have provided carers twice a day, they can't be more helpful because you haven't been provided with the right equipment for moving Ed. Hopefully, your OT will be able to source some suitable equipment very soon.

I feel for you and Ed, and it must have been a terrible shock for both of you when he fell from the Molift. Hopefully, Ed's GP is able to prescribe some effective painkilllers, if he is still in pain after falling.

Also, if Ed is becoming distressed and having panic attacks regularly, there is probably some medication that his GP can prescribe, to make him feel more relaxed and less panicked about things.

I hope you have support from family and/or friends close by. If I didn't have this wretched disease myself, I would offer to drive to where you live and help you out with things. I'm so sorry that I can't be more helpful with advice etc.

Thinking of you and Ed, and hoping that his chest infection clears up and he feels better very soon.

Love to you and Ed,
Kayleigh x

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