[Jay]

Dagmar,

Totally agree with you and Stephen, thanks so much for sharing. All information is useful and warrants further individual review and research prior to subscribing.

however , since i love this forum and all of its members , i will add one more supplement to this list – which by the way is being recommended by my ALS clinic (top 6th in U.S.) in addition to the the standard protocol  ( Riluzole, Radicava), and that is TUDCA. Please research with your doctor prior to taking.

Now back to topic – i take a number of supplements plus Radicava plus Riluzole and still twitch like crazy, so again it comes down to faith and trust that some combination of drugs, supplements and positive attitude will take hold. ALS strikes each of uniquely.

best wishes to all

 

 

[Jay]

Yes Denise,

I have Bulbar as well. Yes experience similar problems ,especially when eating in public. When in public , I eat less and when I do try to stick with finger type food – helps moderate quantities as I can keep to bite size morsels.

learn to chew throughly and avoid tiny stuff that lodge in throat and cause a coughing attack – avoid chips, things with skins and nuts.

what else slows me down is that my arms , fingers and body are so happy not moving. I can do a lot with them but it takes so much energy to convince myself to function like I can and should. Each motion requires re-building that level of confidence to pick up that glass or lift that weight. and once that happens the world improves. Sure there are daily setbacks but if can conquer the fear of fighting back Our world may not be as slow as we make

best to all

 

 

[Jay]

yes  I am also on Riluzole as well ( why not) . With respect to gait problems – doctors indicated that most patients with ALS develop gait problems with or without Radicava – again hard to tell .

We have to fight this battle with everything we have – faith and attitude being number 1 and 2.

give it a try and see if it how it impacts your abilities – it is your decision to continue or not.

 

[Jay]

Yes – I just started Radicava 2 month ago. The port procedure was fairly easy – no pain but it will take 4-8 weeks to become 100% firm. I feel absolutely no difference with it in(without needle)  and remain as active as possible – no restrictions whatsoever.

With needle in ( 14 days on) it is a little cumbersome. You cannot get it wet and it is protected by a sometimes itchy bandage. Again only a very minor discomfort but really non restrictive other than itchy. For showering – I use a large bandage to put over the needle bandage – double protection – buy at the local Walgreen .

Application of medicine – Takes about 2 hours per day. I work full time so mostly during dinner time – again just takes time – but watch tv – read – etc.

Application prep – ( all above assumes a caregiver at home) . You need to be diligent in prep – lots of sterilization considerations – cleaning each step is critical but doable once routine is established. Need to avoid risk of infection.

There is some flexibility once routine starts – its only 10 days on an 14 days  off. -u pick the 10 days on – i like that aspect.

Does it work and is it worth – not a fair question – but i believe it works – so that’s all we can go on.

I say you have to try it and make your own determination. if you work, your insurance will cover most of it and Radicava will pick up the rest ( i believe)

I hope this helps and wish you all the best on this journey

 

 

 

 

 

[Jay]

I was diagnosed 4 months ago – Bulbar – 10 months since onset. My clinic’s support exercise but not to overdo. If you feel tired the next day , then that is a warning sign to slow down. I still work out as many muscle groups ( weight lifting) as possible with the thought to keep the muscles active and responsive.  Cannot tell if it is working but I am maintaining some strength in the large muscle groups while losing some in the finite such as hands and lower arms.  When the going gets tough I just lower the weights.  Still walking and biking quite a bit. I feel much better after exercising and will continue my regiments for as long as possible. The real challenge is keeping my weight at a steady level. With exercise combined with the disease itself I burn through a huge amount of calories – I fluctuate 4 pounds per week if not more.

From what I have learned – exercise is still very subjective and personal . We just need to monitor our bodies – if we feel strong do it – if weakening – slow down – find an alternative and adapt as best as possible.

Good luck with your upcoming cycling season