[MICHAEL ADACKAPARA]

Hi Sonsu,

Some good ideas are provided in the replies above. Our heart pumps the blood to various parts of our body. Once it reaches the capillaries at the extremities, it does not have the pressure to push it back to the lungs/heart. Normally the muscle movements during activities such as walking will compress the capillaries to provide this extra pressure to push it back to the heart. In the absence of much muscle movement, capillaries get filled up and they push out the fluids from the blood in the capillary. This causes the swelling. If the problem is not adressed, it could cause skin breakouts and sores.

1. I elevate my legs above my heart 2-3 times per day using my power wheelchair. I elevate my legs using 6 pillows while sleeping. These measures have helped.
2. Used compression socks; didn’t help any.
3. Used a foot and calf compression massager with heat; didn’t help any.
4. Didn’t use any medications.

Michael

[MICHAEL ADACKAPARA]

Hi Iancu,

Please  don’t  give up hope. Eventhough there is no real  cure for ALS in modern medicine, some ALS  patients have  benefitted from alternative treatments such as: integrated or holistic treatments, naturopathy, homeopathy, etc.  In fact there are about 50 cases  of confirmed ALS reversals. There is very little commonalty in approaches taken by these  individuals.  Each one of these reversal cases followed a different regiment. Most of these cases are discussed in the Sunday recordings of Healingals.org.

Good luck to you and your family.

[MICHAEL ADACKAPARA]

I was diagnosed with limb-onset ALS in 2018.  I have tried and continue to try several supplements, including CBD/THC.  So far I have not experienced much pain other than occasional muscle cramps.  Personally I think that a turmeric supplement and the cannabis products have helped me.

Cannabis: My oral dosage right now is 50 mg/day THC. I mix equal quantity of THC/CBD and gradually increased my dosage to 50 mg.  If you are not used to cannabis, too much THC could give you an anxiety attack.  I get a bit dizzy and disoriented.  Smoking or vaping is probably the most effective way.  I have a few joints that I have not tried.  I also have a rechargeable (via USB) battery operated vaping tool (mine is Alpine) with variable voltage to control the draw.  This is good for vaping live resin.  I have only used it once; so I cannot comment on its efficacy.  It may be a bit difficult to find live resin.

Turmeric:  I use Theracurmin manufactured by Integrative Therapeutics ($90 for 120 capsules).  (I think that Dr. Bedlack at Duke University is using this product in a clinical trial).  Even though no prescription is needed, if your doctor orders it, you get a substantial discount ($45?).  My daughter, who is a physician, orders it for me. This might minimize some of your wife’s aches and pains.   Always take it with a little black pepper to increase its uptake.

I also think that slow release magnesium (slo mag) has helped me with cramps.

 

[MICHAEL ADACKAPARA]

After I was diagnosed with limb-onset ALS in 2018, I added a wheelchair accessible bathroom and a closet at a cost of approximately $50K, with no outside funding.  This included:

1.  A shower stall with a constructed bench and several grab bars;

2.  A tall toilet with an electric bidet (electric bidet=$250; non-electric=$25);  I like the electric bidet with the warm water and warm air dry.

3.  A grab bar by the toilet; this is of marginal use now due to my weak arms.

4.  A washbasin with no cabinets underneath;  now I have trouble reaching the faucet (so I use a piece of PVC pipe to lift the faucet handle).

5.  All new doors are 36″ wide.  Since my existing bedroom door was too narrow for the wheelchair,  I installed “offset hinges” for the door.  This provided an extra 1-2″; just enough for the wheelchair.

I also realized that I cannot reach the electric switches  anymore.  So I use my dressing tool to operate the switches.

The County of Los Angeles sent me a supplemental property tax assessment for the additions.  Luckily I was eligible for a waiver of this extra tax as the additions were medically-necessitated.

You may be able to deduct all or part of these expenses as medical expenses if you itemize during tax preparation.  I did not know this and did not do it.

[MICHAEL ADACKAPARA]

I recently recorded my voice through Team Gleason (grant) using Acapela (program).  Once Team Gleason approves your request, you will be contacted by someone from Boston Children’s Hospital to guide you through the process.  They will loan you the appropriate equipment free.  You may want to do voice banking (most useful) and message banking (limited use).  Voice banking will reproduce anything you type in into your synthetic voice and message banking will only reproduce the limited messages (e.g., thank you) that you banked.  Please follow the instructions carefully.