R E F L E C T I O N S

My wife told me that I had a seizure the other night. As usual I have completely no memory of it. I slept most of the next day. Otherwise I'm completely fine.  I'm glad she didn't call for help. She must be used to it by now. When it happened she was very upset. I heard her call my name and saw her fuss. I asked her what was the matter. She left the room for a moment. At the time I was worried about what was happening. What could be wrong with her? I had no idea it was me who was having a seizure.  I see a neurologist for this and am on medication. I'm lucky I don't have a much worse disease.

The other day while browsing through the web, surfing for an interesting item, I came across this image of a beautiful woman. It's a French ad for cosmetics.   I knew about how the radioactive element Radon was thought to be healthy at one time. But these images brought this misconception to life for me. The sad thing is how lighthearted some of these videos seem to take such a painful way to die.

  FRIDAY, Oct. 9, 2020 (HealthDay News) -- COVID-19 is primarily a respiratory infection, but experts have suspected the virus can also infiltrate the eyes. Now, scientists have more direct evidence of it. Link:  New Coronavirus Can Infect Your Eyes as Well Is this is something else to worry about? ---------------------------- Anyway I found this s trange photo,  I'm sure it's just a joke,  This will not work.

I saw my ophthalmologist today. The exam was fine, almost didn't make it, just so tired.  My CIDP  is acting up. It was fine a couple of weeks ago, then last week I felt it coming back. Now I'm so weak and both my calves ache when I rest in bed. I'll have to be patient. It should improve. If it gets much worse I'll have to call my doctor.

A raining Friday, good for taking care of indoor activities around the house.   Don't want to speak too soon but I feel better after going back to subcutaneous shots of immune globulin (SCIG) instead of intravenous. Wish me luck. Yesterday I  gathered my supplies and injected myself.  One of the four lines had some blood in it, so I had to reinsert it in another location. But it didn't clear up. I had to do with three lines instead of four. The swelling is a little larger that way. Four hours later and I was done. Well it took a little longer because of setting things up and putting them away afterwards.  Also, there is a little bit of hesitation before I can get myself started. Now I'm all finished for another week 😃. Subcutaneous is more convenient because it's done at home when I want, no appointments or driving to the infusion center. Here's a video showing how it's done: Enjoy your weekend.

Why? So I won't miss out on enjoyable activities. So I'll be able to take care of myself (groceries, dump, exercise, etc) How I avoid doing it: -Spend too much time looking for the ideal to do list on paper and also computer application, instead of doing what I need to do. -Being too vague about what I want and the steps I need to take. I use Microsoft to do: It's free and seems to be as good as any other. And I use paper calendar, paper weekly schedule, Google email reminders, and an index card for what needs to be done right now today. Here is an article I find very useful:    How to Make Your To-Do List Doable I've been feeling very woozy and weak the past few days, It's my sickness CIDP.  https://www.youtube.com/watch?v=oDSWrMkvnn0&t=48s Tomorrow I have an IVIG treatment, the last intravenous one before I restart doing subcutaneous treatments on my own at home. Hopefully it will help. I keep typing in the wrong letters s...

( Photo from web ) First : Most important is to inherit healthy genes from your parents. Second : More good luck: Have no serious accidents Catch no life threatening diseases Avoid lethal food poisoning (What you have some control over) Third : Avoid/Limit Poisoning yourself with: Smoking Alcohol Sun exposure Overeating Eating excess fat, salt, sugar Fourth : Have a healthy diet that fits you personally. Fifth : Moderate exercise Sixth : Checkups with Doctors, Dentists, etc. Seventh : Social Contacts (Family and Friends) Eight : Meaningful Life Purpose Ninth : Avoid Stress. Get enough sleep, etc There must be more.

It took four hours to inject immune globulin to treat my CIDP.  I spent the time on line with my laptop. It wasn't too bad except for all the time it took.  I have this treatment once every three weeks. Hopefully it will restore my energy and strength so I'll be able to post more often; and do more of what I want to do without falling.

I signed up for a new course of physical therapy to begin in a week or so. I quit my present physical therapist because he was discouraging me, telling me I was doing worse.  He even told me to stop exercising and see my doctor.  My doctor said it was fine for me to exercise.  He wrote a prescription for me to give to the new physical therapist. I'm sure I'm getting better and hope the new therapist will help me more than the old one did.  In a year I progressed from a wheel chair to a walker and can climb the stairs with a cane. But I still need a walker for everyday activities.  CIDP left the strength in my legs and my balance affected. Lynette will have to keep driving me for a while because of a seizure I had six months ago.  Today I drove my car down the driveway to the mail box and back.  In about a week I'll be allowed to drive again (Six months is the time required after a seizure.). Lynette is going for an MRI at 8:30 tomorrow morni...

Our daughter Laurissa is coming down from Brooklyn to visit us tomorrow or Friday.  We'll get to see our grandchildren again, Miles and Evey.  Son-in-law Ryan will take turns with Laurissa driving the six hour trip. I was hoping to give myself the weekly three hour injection of Hizentra today before they got here; don't want to scare the grandchildren with the four injection site tubing coming from my abdomen.  They're only subcutaneous but it might be frightening for them.  It would seem strange to hide in another room. The delivery of the medication and injection tubing never arrived today. There was a mix up by FedEx. The package should be here tomorrow. I have a dentist appointment at 1:30 but there should be enough time to finish the injection before they get here. Just in case you want to see details I have these two videos. The first is a video with instructions. I use more; four sites and three syringe-fulls. There is no pain involved except for t...

I'm scheduled to take another EEG exam for three days.  I'll have the electrodes put in tomorrow, wear them all weekend, then have them removed on Monday.  I will go home wearing the wires on my head. It's not painful, just annoying.    This weekend I'll keep learning how to use the new iPhone I just bought.  My flip-phone would not recharge. This is the second flip-phone I've had that did this.  Besides, it was time for me to finally get a "smart phone".  Kidding around I used to call my old phone a "dumb phone" because all it could do was to make and receive calls and text.  It was easy with almost nothing to learn about using it.  The EEG will be checking all the areas of my brain.  I must be in there somewhere. Maybe the combination of all the functioning areas make up a soul. Maybe the soul just goes for a ride in the body, like a person riding in a car. Who knows for sure. It would be great for me to have more faith in God...

I usually go to the hospital for a four hour IV of Immune Globulin every six weeks to treat my neuromuscular disorder, CIDP ( Chronic inflammatory demyelinating polyneuropathy). Now I"ll try injecting myself once a week subcutaneously for about two and a half hours, which should be safer than an IV. Instead of a large needle in a vein I'll have four tiny insulin sized needles in a fatty area of the skin.   I'll be able to walk around while wearing the needles and pump. It will also level out the doses. I pasted some information below.  CIDP is: Mine affects both my lower legs and causes me to have many falls and makes it difficult to walk, especially without my leg braces. Right now I'm using a wheelchair and working my way up to a walker. The medication is called Hizentra: Mine is with four needles and it will take a few times for a nurse to show me before I'm comfortable with doing it myself. 

My rollator came in a box with only a few pieces to put together. Easy, right? But after I finished it was difficult to steer.  Either something was wrong or I only needed some practice. The next day my physical therapist was coming for a treatment session.  I'd ask her to have a look. To my embarrassment, I had the rear wheels in front and the front wheels in back!  She was very nice about it, told me men sometimes tend to put things together without carefully studying the directions. It glides very easily and is much faster than a wheelchair.  The physical therapist told me to take my time, not rush with it.  After a little practice I think I'll really like it.  It's like a seat on wheels with a small storage bag.

Medline Ultra Lightweight Rollator This afternoon one of my physical therapists suggested I try a rollator instead of a walker.  I never heard of a rollator. It has four wheels, larger than the two wheels on a walker and two hand breaks.  The front wheels turn. It weighs only 11 pounds so it will be easy for Lynette to fold and put in the car. (I can't drive myself for a while.) She told me this was more stable and if I become woozy I can just rest on the built in seat.  It also has a storage area under the seat. At home I'll use my wheelchair until my balance gets better but I can try the rollator to go shopping or eat out. I bought it online from Walmart with free two day delivery.  It should arrive on Friday.  Wish me luck.

I'm waiting for the results of this test. Here's an explanation I found on the web: "The tilt test is a test that assesses someone’s response to orthostatic stress. Orthostatic stress is the fancy medical term for standing upright. The tilt test is also known as a tilt table test because it involves being basically strapped to a table that can tilt to different angles. A lot of the interest in tilt table tests originated from the air force. Years ago it was reported that up to 25% of those in the air force would pass out if they were in a straight upright standing position for a prolonged period of time. It was known that the tilt test could induce passing out in a subset of people and so it became a tool with which to assess people at risk for this. Nowadays the tilt test is used widely to diagnose  syncope . Syncope is the medical term for passing out. In the tilt test, patients are strapped to a tilt table. It is basically a table capable of being swivel...

I've had this test several times over the years and again last week. Here's an explanation on how it works.

For now the doctor told me I have the ocular type of Myasthenia Gravis (MG).  But I believe it can change into generalized MG. Here's an explanation. "MG is differentiated into two major clinical forms: ocular MG, in which the patient has predominantly ocular symptoms, and generalized MG, in which the patient develops generalized proximal weakness. One study found that, over a mean follow-up period of 17 years, approximately 15%-17% of patients with MG had strictly ocular symptoms." (from the web) My energy levels are low and I was told to use a walker for the time being.  I'm waiting for lab results. Medication helps with vertigo and nausea. I nap a lot. This video is technical and a little hard to follow but it explains my situation. I hope to be back to normal soon!

I've had severe vertigo the last two weeks so my family doctor recommended that I see a physical therapist skilled in performing the Epley maneuver.  I'm going for the treatment tonight.  I've never heard of it but his video explains it quite well.  Hopefully this will work. 

I'm eating chicken liver because it's  is a good source of iron, for my low blood iron levels.  Iron supplements cause intestinal irritation for me so I can't take them.  Even Flintstones chewable tablets are too much for me. Besides, I like the way chicken liver tastes. "Ingredients: 4 chicken livers (remove the tough tendons if you’re finicky) 1 tablespoon olive oil Kosher salt  Cook the chicken livers: Heat the oil in a small fry pan over medium-high heat until shimmering. Add the livers and sprinkle with a three finger pinch of salt. Cook until well browned on the bottom, about three minutes. Flip the livers, an cook until well browned on the second side and the pink color is entirely gone in the middle, about three more minutes. If the livers are browning too quickly, turn off the heat and let them finish cooking in the residual heat of the pan. Remove from the pan and  serve." Quoted from Dad Cooks Dinner bog. I found this "rec...