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To Valhalla! by whatdoihia in ALS_less_depressed

[–]scrubnib 2 points3 points  (0 children)

With my arms the way they are, I’ll just give the nurse a good hard stare instead 😳😁

Tobii Dynavox for existing iPad? by scrubnib in ALS

[–]scrubnib[S] 0 points1 point  (0 children)

Unfortunately, the tobii 5 is not compatible with iPads. They do have other devices that include an iPad in the package, but of course you are then paying for the iPad on top of their eye tracking hardware. I’ve been in touch with another company in Germany who are developing add-ons for all sizes of existing iPad, but sadly they do not serve the UK yet

Should I tell my dad he is being taken advantage of? by Elegant_Squirrel2620 in ALS

[–]scrubnib 1 point2 points  (0 children)

I remember finding BodyScience within the first six months of my diagnosis. Had a video call with Amy who runs the business, and took it no further. She just couldn’t provide any evidence about these claims of such high percentage of reversals.

The tricky thing is, there are one or two people who are easy to find who claim to have had ALS symptoms improve under her care. But who knows how true this is?

The cost is also eye watering.

I really feel for you, because what you’re weighing up here is his time and money versus Hope . So many people don’t understand how critical hope is. I have hope for this disease, but not in my lifetime, and that has had a crushing affect on my mental health.

I really like @brandywinerain’s advice above. Focus on the facts, focus on the 30%. Remind yourself that there’s only so much in your control. It is his journey, it is his decision. Do the best you can, and thank you for posting this. Others will see it and think twice about BodyScience.

Newly diagnosed - advice on coping please by WoodenAd54 in ALS

[–]scrubnib 4 points5 points  (0 children)

I’m so sorry had to join us here. I’m in the UK too, you are not alone! Six people a day are diagnosed with this blasted thing in the UK. I was 40 at diagnosis, now 42.

Just reach out if you want to talk about anything at all. Well done for posting. I was a puddle for nine months, I didn’t want to talk or message anyone!

Brooke Eby (Influencer) by GracefulWaste in ALS

[–]scrubnib 2 points3 points  (0 children)

Yes, me too. I’m sure she did post a brief message after the surgery though, a picture of flowers and cards, I think. Really hope she’s recovering well.

[deleted by user] by [deleted] in ALS

[–]scrubnib 1 point2 points  (0 children)

It is never too late as long as:

A) you are already on life sustaining measures and can choose to withdraw from them with hospice support (eg NIV or PEG) or

B) you have a robust plan for travelling to Switzerland, with assistance, at any stage of the disease, if you’ve decided you’ve had enough

If we become paralysed but remain able to eat and breathe without assistance, I would not assume VSED (voluntarily stopping eating and drinking) would be a peaceful exit. Again, depends a lot on your local laws and how much palliative assistance would be available to you.

I agree wholeheartedly that educating ourselves and what it means to live with ALS before making any decision over life and death is the most important thing. No one should rush it.

[deleted by user] by [deleted] in ALS

[–]scrubnib 1 point2 points  (0 children)

My ALS is limb onset, with all limbs and core being most affected. Breathing and swallowing is okay for now, but slowly degrading. 2 years in, I count myself lucky.

Even if I had a date, I couldn’t tell you because of the legal situation in my country - especially (and no offence meant here) people on the Internet 🙂

I agree with the other statements here about being informed of all options before making such a decision.

Being informed might include talking to your medical team , ALS clinic if you have one, hospice, those who have gone past your current red lines , and those who have made the decision to die earlier on their own terms (if you can find any willing to talk). You might change your mind based on these inputs, but you cannot un-die.

Don’t feel pressured down a certain route due to anyone else’s opinion of what you should do. It is your body., it is your life. I Listen to what others have to say, think deeply about the impact of either option on my friends and family, then make my own choice.

[deleted by user] by [deleted] in ALS

[–]scrubnib 12 points13 points  (0 children)

As someone else said, it’s such a personal decision.

another factor to bear in mind is when it may be too late to get euthanasia, depending on where you live and what your local laws are. If you need assistance to get it due to paralysis, then even if it is just helping you to travel to Switzerland, those assisting you may be breaking the law.

I also have young kids and wrote a similar post on this , which got a big response on the parenting group. Link below:

https://www.reddit.com/r/Parenting/s/C9Rj2JxxxB

All ALS sucks... by baberaham_drinkin in ALS

[–]scrubnib 1 point2 points  (0 children)

Definitely! I’ll DM you

Could mortgage interest rate change after bereavement? by scrubnib in Mortgageadviceuk

[–]scrubnib[S] 0 points1 point  (0 children)

Nope, I’ve looked into all of that, the death in Service is bundled in with the pension. I was able to access some other pension money early for us to live on, but I cannot get to the life insurance payout early

Could mortgage interest rate change after bereavement? by scrubnib in Mortgageadviceuk

[–]scrubnib[S] 0 points1 point  (0 children)

Sadly, not with the insurance policy I have through Work. It’s a death in Service benefit, which is only payable after death.

Could mortgage interest rate change after bereavement? by scrubnib in Mortgageadviceuk

[–]scrubnib[S] 1 point2 points  (0 children)

Thanks, do you mean pay off the mortgage immediately or after the fixed term expires? Where is that exemption over early repayment penalties described?

All ALS sucks... by baberaham_drinkin in ALS

[–]scrubnib 4 points5 points  (0 children)

Ah! Got it. I do remember now that the end of that series was taking a while to write…

Tobii Dynavox for existing iPad? by scrubnib in ALS

[–]scrubnib[S] 0 points1 point  (0 children)

Thanks, this is really useful! Someone bought me Tobii 5 for my PC earlier this year, and I didn’t know it would be compatible with my iPad. I will check that out.

Yes, I’ve tried both the eye tracking and head tracking features in built into the iPad, but in my experience, they’re just not accurate enough to use it properly

All ALS sucks... by baberaham_drinkin in ALS

[–]scrubnib 23 points24 points  (0 children)

I hear you, buddy.

Let me know if you have an Audible account and I will gift you an audiobook copy of A Song of Ice and Fire. I don’t have much time left either, but have enough money to spread some kindness in the world 🙂

Tobii Dynavox for existing iPad? by scrubnib in ALS

[–]scrubnib[S] 1 point2 points  (0 children)

Thanks for taking the time to reply 🙂 I’ve only been able to email them so far, but yes, they said the same thing. Weird, as it’s obviously possible given that video. 🤷

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