Riluzole

[JAN Q]

Hi Terry, I will carry on with the rilozole ,only other drug I take is carbocistein to help with the mucus, still trying to get the dose right with that. I do have contact with my local hospice, am having visit today from nurse and then they have arranged for me to visit the day centre there on Wednesday, all new to me but feel the time is right now. Thanks for chat it all helps , X love Jan Q.

Hi Terry nurse came yesterday and we discussed mucus problem again, she mentioned trying patches which dry it up,my sleeping is being disturbed just with having to remove mucus during night, do you know anything about these patches? X JAN Q.

[Ellie]

Hi Jan,

The patches are probably Hyoscine, a drug that reduces saliva production but I don't know how effective it'd be for mucus.

Ask the nurse about a suction machine which will clear the mucus, the hospice probably has one. And there are things you can do to lessen the production of mucus, which I'm sure you already know! Ensure you get lots of fluids and avoid too much dairy foods.

Sipping pineapple juice, hot lemon tea or cold fizzy drinks can help thin the mucus, while some people find an anti-allergen medicine, such as Zyrtec, effective.(ask GP/nurse first)

Take care,
Ellie x.

[JAN Q]

Hi Ellie,thanks for your reply,yes it was hyocine now you have said it,I couldn't remember the name,but will speak to her again on Thursday she thought it may help although she said it does dry you up. I don't know of anything I can do to lessen the mucus have just been told it is part and parcel of the disease. I'm still not sure the carbocistein helps me it seems to make more mucus after i have taken it. Just trying what is recommended. X Jan Q.

[Candle]

Ray provided threads on how to prevent and treat mucus. Search Fishmate 12 on this forum. RIP Ray

[Dude]

http://www.boots.com/en/NeilMed-Sinus-Rinse-Kit_121768/

I've had thick mucus, caused by post nasal drip for a long time.
I've recently had great success with a 3 pronged attack consisting
of above irrigation kit, nebuliser and full fat Coke (Thanks Steve).
On a scale of 1 to 10. 8 being before and 3 being now. Dude

[JAN Q]

Hi Dude, the sinus irrigation sounds very interesting as I have suffered post nasal drip for years Will consider trying this as can't seem to control this mucus problem yet , thanks as always for information on this site .more than from anyone at moment. X JAN Q.

[Dude]

Another important thing to mention is oral hygiene. Brush teeth 3 times per day. I have
a top denture with a few teeth on (rugby) and I keep on my desk if nobody about. lol Dude x

[JAY TEE]

Hi all been on riluzole since formal diagnosis in May 2014. Blood tests been ok. Do feel a bit drowsy and have a cat nap most days. My mobility and speech have reduced a bit. Still manage to walk around the house with Zimmer frame.

[Dude]

Cat naps are good JT. Have you considered a rollator with seat on. They are good cos you can sit down when you get tired like waiting for a bus etc. Have you got, or planned for when you can't walk, downstairs wetroom & bedroom. Dude

[Terry]

Hi Jay;

A rollator is generally better than a zimmer but does need a bit more room. Not all Mnd people lose the ability to walk but most do.

Love Terry

[Barry52]

I was glad of my rollator yesterday at our daughter's graduation ceremony. There was a lot of hanging around but I had my mobile seat and it also secured us front row seats.

Barry

[GrannieAnnie]

What a lovely day you must have had. Graduation Days are one proud moment for us parents and how nice to have a front row seat. Congratulations all round. Ann

[John14]

I've memories of my daughter's graduation at Cambridge, after the ceremony we went for a meal and bumped into Rory McGrath who was very amusing. And to Sheffield for my son's graduation during a heat wave. That's were I met my wife, when we were both at Uni so many happy memories. Must look into a Rollator can you get them for nothing from OT or do you need to buy them on E Bay, are you comfortable with image?

At the moment I'm with a stick which I think looks quite distinguished somehow. Anyway happy days & congratulations!

Cheers,

John x

[Barry52]

Thanks Ann. All three of our children graduated. Our son conventionally via uni post school but the 2 girls did it the hard way whilst still working and raising family. My next challenge is to see the grandchildren graduate. Only another 8 years to keep going.

John,
The local MNDA branch paid for mine but the OT can apply on your behalf. I am very comfortable with the image as it is the Ferrari of rollators. 0-60 paces in about 10 minutes lol. Good luck with your application.

Barry

[Terry]

Rollators are great if you have a self service restaurant or to put drinks on whilst moving back to your seat. I have a plain old OT model but you're right, there are some very stylish models.

Love Terry