Moments With Debbie

Wednesday, May 30th

Wal-Mart Mishap

I had a visit today with the doctor (surgeon) who replaces my feeding tube when it is needed. Given that I have lost weight, my feeding tube button has started seeping out around the opening. It’s been two years since I had it last replaced and my surgeon was very pleased with how it looked and how Chris keeps it clean. Chris changes the gauze often to keep it dry. Unfortunately, the doctor wasn’t able to replace it that day so I will have it done next Tuesday at the hospital. This will be the fourth one and I still do not look forward to having it done. It is not painful, just a major discomfort but at least it goes very quickly (2 minutes at most).

After the doctor visit and two short stops to pick up prescriptions (I stayed in the van), we went to Wal-Mart to exchange some items. My power chair is an Invacare TDX3 with the ASL Head Array controls. It is a very comfortable and well equipped with tilt, recline, adjustable power leg rests, and air cushion seat. It has an attendant control, which I thought Chris was using until I heard him shout HOLD YOUR HEAD UP! It was too late! I crashed into a rack of clothes. At least this time it was not a bra strapped to my face! (I took out a bra display in another store) Chris is never going to take me out in public again! At least I wasn’t in the glassware aisle. We have fun when were out and we can’t help but to laugh at ourselves.

Laughter is very good medicine………..Debbie

Storm TDX3 Wheelchair
Debbie on 05.30.07 @ 02:16 PM EST [link]

Monday, May 28th

Spiders and Doctors and Bi-PAPS - OH My!

I have been using a Bi-PAP with a full-face mask every night for about six hours a night steadily for the past 3 or 4 years. I feel comfortable with it for the reason that not only am I less fatigued during the day and without those horrible headaches but the awful thought of a spider crawling in my mouth or up my nose because the full-face mask covers me! I fear spiders more then dying! Being paralyzed with fear along with being paralyzed physically with a big hideous Wolf spider crawling up the pillow in the direction of my face, what a nightmare! Thank goodness I was awake at my computer during that episode and had Karleen to rescue me! She is fearless! She picked him up and put him outside! I know they are harmless and beneficial but they are creepy and I don’t want all those legs walking on me! Anyway, using a Bi-PAP at night helps to keep me alert during the day. smile

I am so looking forward to my ALS clinic visit coming up in mid-June. We go to the Cleveland Clinic’s ALS Clinic every six months. My first appointment starts at 8:00am so we always drive up the night before and get a room at the InterContinental Hotel right across the street; very convenient. I am anxious to have my FVC breathing test results as well as my ALS-FRS score. They are good indicators at how I am really doing. I also need to ask my Doctor about the cognitive changes in ALS patients which seem to be affecting me. I also need to ask about Quinine Sulfate, which is no longer available, to see if there is a good substitute. I still have some left and have been taking one every other day to make them last.

That is all for now………….Debbie

Debbie on 05.28.07 @ 05:24 PM EST [link]

Saturday, May 26th

My Day Out

I know that I haven't posted lately to the blog and it definetly isn't due to lack of topics or desire. It just seems that my brain isn't cooperating lately and I don't know if it is due to medications or the cognitive changes in ALS patients that has been getting alot of attention lately. I don't think it is due to lack of oxygen because my breathing is doing good again which leads me to todays topic.

I finally got out of the house for part of the day on Wednesday. I had an appointment with my pulmonary doctor. I first had to go to the local hospital to get a breathing (NIF) test. I don't know why this test can't be done at the doctor's office but anyway I scored a 35 which was impressive to the doctor. The higher the number the better and it had been as low as the teens before. He said that I was about the same as 6 months ago and improved over a year ago. He said that my breathing and overall pulmonary condition was holding steady if not slightly improved and that my general appearance looked better. I guess I must have looked awful a year ago. He really didn't say too much this time except that he would see me in 6 months. I don't think the doctors know what to say sometimes because they expect to see someone declining and I am not (well maybe just a little).

I then got to go do one of my favorite things. SHOPPING! We don't shop at the Mall much any more. The only thing handicapped friendly is their parking lot! Walmart is more handicapped friendly with wider aisles and they even have a family restroom which unfortunately is rare to find anywhere. Lower prices also make shopping there extra enjoyable. A big day for me but it was nice. More soon (If I can get my brain jump-started)......Debbie

Debbie on 05.26.07 @ 01:38 AM EST [link]

Tuesday, May 8th

Longevity Part 2

I believe that part of the reason I have outlived the average ALS lifespan is nutrition. You have probably heard a hundred times how important proper nutrition is and in ALS it is no exception. Muscles need fuel or they quit working. Earlier this year since I was putting on a little extra weight, I decided to cut back on my food intake-BIG MISTAKE-My body has not recovered from that yet and the muscles I lost from my "diet" will probably never return. Every time that I don't eat right, my body really suffers. It was recommended to me and I agree that an ALS patient should get a feeding tube put in early in the disease (before you need it). I did and it has helped me very much and the decision to get the peg tube is one I have not regretted. If I don't feel like eating or get tired of eating, I can still get my full meal through the tube. Plus I don't have to worry about choking down the numerous medications and supplements I take. They all go through the tube (I will talk about my specific medications and supplements next time). I still eat some food by mouth and enjoy eating but I am not under pressure to get all my nutrition in that way. I use a product called Jevity which seems to be well balanced and is made especially for feeding tubes.

So my recommendation is to get a feeding tube and get it before you need it and to continue to eat a good balanced diet. A nutritionist working along with your ALS doctor would be beneficial.

Eat well, stay strong! __Debbie

Debbie on 05.08.07 @ 01:43 PM EST [link]

Monday, May 7th

National ALS Awareness Month

I do believe that as a PALS that I have some responsibility to do my part in making my community aware of ALS so I wrote a letter to to the editor of our local paper. I hope that it works and that people do read those letters to the editor. Maybe they will want to do another story about me. That would be nicer! Here is a copy of the letter:

To the Editor:
The month of May has been designated as National ALS Awareness Month. ALS, which stands for Amyotrophic Lateral Sclerosis, is a neurological disorder in which the motor neuron cells in the brain and spinal cord die which leads to paralysis and eventual death of the patient usually in 2 to 5 years. The disease is better known as Lou Gehrig's Disease named after the famous baseball player who died of the disease in 1941. Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS (two per 100,000 people) is five times higher than Huntington's disease and about equal to multiple sclerosis. It is estimated that as many as 30,000 Americans may have the disease at any given time. The disease has no known cause and still has no known cure.
I have been living with the disease for 13 years now and though ALS has taken away the use of my arms, left my other muscles barely usable, left my voice barely understandable, and is making it hard to breath it has not taken away my spirit and my hope. I will not surrender my faith, my hope, my courage or my laughter to this vicious disease. I now have 4 grandchildren and often wonder if they question as to why grandma doesn't hug them or why they can't understand me. That is the cruelness of this disease. Why have I lived 13 years with ALS and others only a few months? There are still more questions than answers to this disease. Though great strides have been made in research, the cure still seems to be miles away.
Fairfield County has had it's fair share of ALS patients who have lost their fight with the disease and unfortunately there will be more but remember there are still patients out there like me who are still hoping and searching for the cure. I just ask each of you to understand what ALS is and how it affects the patients and their families who live with it daily. If you would like to know more about ALS or would like to help in fighting this disease there are many great organizations such as ALSA or the MDA/ALS which are very beneficial to ALS advocacy and a great source of information.

Debbie Tope
Baltimore

Debbie on 05.07.07 @ 02:26 AM EST [link]

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