[Ahmed Yusuf]

Dear Louise,
My brother is fortunate enough to have the highly adaptable TDX SP2 power chair from Invacare.

To reduce pressure sores and leg problems the wheelchair specialist at our University of Florida ALS clinic emphatically insists that the user recline several times per day for one hour at a time.
See the attached photos below.

During the reclining one can nap, watch TV, make phone calls or perform other tasks.
Yusuf

[Ahmed Yusuf]

Ali & Everyone,
Most physicians will not recommend drugs that are not FDA-approved, since such recommendations exposes them to lawsuits in this very litigious society. However, keep in mind that this is not a new drug. It has been used in Japan and other Asian countries for more than a decade as a neuroprotectant. And, Phase 3 trial participants are dosed at 100mg (10 capsules) per day.

In addition, it is important to point out that the “good news” on Ibudilast thus far is based solely on an early-disease subgroup of a completed Phase 2 trial.

The definitive verdict will be known upon the completion of the ongoing Phase 3 trial, which ends in late 2024, with a report available months thereafter.
Nevertheless, the Phase 2 results are hopeful for some. And, most cannot wait.

Finally, the Phase 3 trial is closed, and half of its 230 participants are receiving a placebo, unfortunate for them. But, you can “participate” informally in the trial and get the same experimental therapy, and (unlike trial participants) you don’t risk receiving a placebo for years..
Yusuf

PS: Do not take my word for it. Study the discussion at https://endals.altervista.org/#ibudilast, as well as the supporting documents linked there, and decide for yourself. After  a few hours of study you will be able to make a decision.

[Ahmed Yusuf]

Everyone,
You can learn everything about Ibudilast by studying the text at https://endals.altervista.org/#ibudilast .

Note the key statement near the end: “Within a subgroup of 34 Early-Stage patients, 11 (32%) experienced stable disease or improvement, which is an astonishing achievement if accurate. Each of the 11 is represented by a red line in the graph below, which comes from this very detailed 2018 trial report (a link to the report is given).
“After 3 elapsed months each of the 11 patients remained either stable (the line becomes horizontal) or improved (the line slopes upward). The remaining 22 patients (68% of the 34), represented by blue lines, continued to decline, but some less rapidly than others.”

If true, this is exceedingly important, because NO OTHER drug offers stability or improvement – all others attempt to REDUCE THE RATE of decline. So, Ibudilast may be hopeful, especially for those with early stage disease.

The Japanese pharmacy and the drug dosage are given. It would be risky to buy from Europe. Such a lengthy distribution trail (Japan to Europe to USA) offers too many opportunities for a counterfeit drug to be introduced. The Japanese pharmacy, which is linked in the article, is located in the same city as the manufacturer’s research center, making counterfeit substitution unlikely.

Yusuf

[Ahmed Yusuf]

My brother’s ALS is somewhat advanced, as he is wheelchair bound, but still has some hand control and no swallowing difficulties.

We think we have found a better alternative to Assisted Living (AL), at least for now.
Assisted Living can be expensive, in north Florida $3,000+ for the room, meals and very basic services. Then, there are additional care packages, an extra $100 per month for help to enter and return to bed, several hundred for dining assistance, commode assistance etc. Very soon the amount reaches $4,000 per month for a very cramped room.

Even with the high price, we found the quality of services to be irregular and so often lacking that we had to hire an outside personal assistant.

To get better care and surroundings we purchased a 3-bedroom condo – mortgage, association fee and utilities total about $1,000 per month.

To accommodate an expense-sharing disabled partner, two of the rooms form a 600 square foot housemate suite (large bedroom, private bath, visitor/media room, computer station and walk-in closet). We will lease the suite for $3,600 per month, covering all utilities, WiFi, laundry, meals, 8-hours of helper services and full use of kitchen and dining area.

I installed a motorized remote-controlled front entry door and roll-in shower. Outdoors, the surrounding are beautiful with great security.

We have regular physician visits, paid by Medicare, and nurse visits as part of hospice.
The price may seem expensive; however, we have 8 hours per day of helper services. At AL you won’t find someone in your room for 8 hours per day, not at that cost, to help with grooming, bathing, commode, feeding, laundry, mobility, etc.

So, the helpmates will share expenses and avoid AL with more room and more services. For 6 months now, things have worked very well. We hope to avoid a nursing home by increasing the helper hours to 12 or more. But, that will be decided later.
The difficulty right now is obtaining a housemate. There are great pools of candidates served by the nearby ALS and neurology clinics which also have Multiple Sclerosis, Muscular Dystrophy and stroke clients. However, the clinics and government agencies won’t help, due to HIPPA liability fears, although they all agree that such shared-cost arrangements are an important unmet need.

So, we are now just beginning to advertise through Zillow and other rental services, and will let you know as things develop.