Moments With Debbie

Friday, June 15th

I will take back what ALS thinks it has taken from me!

The strength in my hands and legs are much weaker today. I am having a hard time typing. I use an on-screen keyboard and my mouse which I hold with both hands on a lap tray and kind of move with my legs. I know it sounds strange but it has been working OK until now. Losing the use of my hands will be torture! Damn you ALS! It is so hard to lose another ability with this disease. I have been blessed that the disease is progressing slowly in me and that my losses are slow in coming but it is still hard.

In my arsenal of products and gadgets to take back what ALS thinks it has taken from me, is a program called NaturalPoint. It uses infrared to track your head motion. You move your head to control the cursor. It also features DwellClicker, which is a time delay that clicks for me so I don’t have to click the mouse button, but I keep clicking it off! It takes patience to learn which I seem to be without or little of lately. I have a beta version of NaturalPoint and it is probably time to upgrade, as the features in the new one seem improved over my version.

I am also battling chronic sinusitis; my average is three bouts of it a year, this is my first for 2007. I’m on antibiotics and narcotics. smile Just kidding about the narcotics………Debbie

Debbie on 06.15.07 @ 01:19 PM EST [link]

Tuesday, June 12th

Longevity Part 3

This is the third blog posting where I am exploring the question "Why is ALS progressing so slow in me?" Many people have asked me what medications and supplements I am using as if I have found a "cocktail" of drugs that is helping me. I am including a list of all my medications at the end of this post and as you can see, there is nothing exceptional about it. Just the usual medications to help deal with the symptoms and supplements at regular doses. I have heard of PALS using vitamin E and C as well as other antioxidants at high doses but to me the side-affects and damage that it can cause is just not worth it. I think that you have to try anything that might help as long as it is safe and you do so with moderation.

I am taking Rilutek and have been for about 9 years now. Rilutek is supposed to be protecting my neurons from being destroyed, so maybe it is helping to slow the disease progression down. It has been proven to be safe but the jury is still out on it's value. It is amazing and very sad that in the 10 or so years since Rilutek has been approved that there is still nothing else approved to treat ALS. I participated in a drug trial for BDNF when I was first diagnosed. The trial went well and the numbers looked good until it went to the FDA for approval. There have been so many promising drugs "shot down" since then as well. It is heartbreaking for PALS as well as the researchers.

I think that the point to this posting is that there is no wonderdrug for ALS yet. The medications I take are wonderful in helping me to deal with the disease and I would not want to be without them but are the medications I take the reason for my longevity? I seriously doubt it......Debbie

Prescription Drugs:

Albuterol Sulfate/ via nebulizer/ as needed
Ipratropium Bromide/ via nebulizer/ as needed
Ambien/ 5 mg/ 1x day at bedtime
Miacalcin/ 200 iu/ac/ 1x day
Ditropan/ 5 mg / 2x day
Rilutek/ 50 mg/ 2x day
Baclofen/ 20 mg/ 2x day
30 mg/ 1x day at bedtime
Amitriptyline/ 75 mg/ 1x day at bedtime
Prozac/ 40 mg/ 1x day in morning
Lorazepam/ 1/2 mg/ 2x day
Quinine Sulfate/ 324 mg/ 1x day at bedtime
Nasonex/ 50 mcg/ 1x day
Miralax/ 17 g/ Every other day as needed
Folic Acid/ 1 mg/ 1x day
Prilosec/ 20 mg/ 1x day
Darvocet N100/ 100-650/ As needed for pain

Supplements:

Multi-vitamin/ 1 tablet/ 1x day
Selenium/ 100 mcg/ 1x day
Vitamin E/ 400 IU/ 1x day
Vitamin C/ 500 mg/ 2x day
Zinc/ 50 mg/ 1x day
Calcium w/Vitamin D/ 600 mg/200 mg/ 2x day

Debbie on 06.12.07 @ 11:31 AM EST [link]

Thursday, June 7th

Ouch!

This past Tuesday we went to the local hospital to have my feeding (peg) tube replaced. Every time I have my button replaced, I get very nervous so I took my “stay calm” pill (Lorazepam). It definitely helps. The weather was cooler that day so I wore a long sleeved shirt and long pants; good choice! It was cold in there! Two nurses made me comfortable with warm blankets and friendly chatter. They all seemed extra caring and nice that day which really helps. They took my vitals and asked for my medical history. Chris knew and answered for me. He always makes a copy of my medicines for every doctor’s appointment. They are always so happy when he does that since my list of meds is quite long.

It was 2:00pm the man of the hour is right on time. Dr. Yenchar is the surgeon who has replaced all my feeding (peg) tubes so far (4 and counting). My chair tilts back far enough that I didn’t even need to get out of my chair. He used a numbing jell around the button (he never did that before), grips it, pulls, and pops it out. I usually never look but when he was pulling, the area around where he applied the jell starting burning, so I looked and saw blood and what looked like a cherry with a stem. He then says we’re done just as he puts the new one in. I have to be honest that it hurt. The paper work took longer than the procedure though. The doctor then said that he would see me in about two years. I have been averaging just over two years per button, which is very good from what I have been told. Two years is just enough time to get prepared to do it all again.

Another life lesson learned:
When typing a letter, especially when using an on-screen keyboard, SAVE OFTEN! It can be a bright and sunny day and the freaking power goes out and wipes away hours of typing. (Ouch!) ……..Debbie

PEGtube (10k image)
This is what the PEG tube looks like and that rod is what the doctor uses to take the old one out and put the new one in.

Debbie on 06.07.07 @ 11:28 AM EST [link]

June 2007
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