May 25, 2019

I want to share with you some of my thoughts about the way forward for me regarding the situation I am in presently.

1)    The flights were via BA and it allied partners and they don’t give refunds but they do offer the chance to use the ticket for a whole year (I am sure that you would have to pay something for changing the flight dates.) We booked the ticket to leave to home leave on May 31^st this year. So the ticket is good till May 31^st next year. My travel agent, Rajes, asked if it would be possible to still fly this year since the time leading up to May 31^st next year it mostly winter and not a good time for a home leave.”

If I decide that it is still not possible for me to do this traveling this year, it would mean losing the money for the tickets, which was around $1500,00. As painful as that is, I never imagined that I would have to make such a decision.

2)    There would have to be 2 things before I could even think of considering this year.

2.1 These spasms would have to stop. Now that it is clear that neither the spine nor the brain

      are the cause of these spasms and we have been put under the influence of medicine to

      bring this under  control, this is one of the things that would be necessary for a trip like

      this one.

2.2 The leg with the replaced knee would have to be, as I see it, acting normally. As it is now

      I have to hobble, and that is not good enough for travel although I am able to drive an

      unhindered now. I would like to ask the physiotherapist if she could do an intense course

      in trying to bring this knee up to standard. Seeing that it would have cost around

      R200,000.00 + for an operation, it would be much cheaper to pay the physio about

      R5000 to do the job if she thinks it is possible. It would have to be by the end of June.

3)    If these two things were under control, I would be able to think of the possibility of a home leave still this year rather than just losing the fare altogether.

I would probably opt for staying at one place in different locations and ask people to come and visit me where I am staying rather than visiting at each one’s home but that could, I think, be organized. I would still need transport, but it would be going from one end of the country to the other, and not from house to house.. I know that some of you are worried about me, but both my Aunts Stasia and my aunt Rose were driving around even after their 90^th birthdays, and I am nowhere near that yet. For me, driving is like breathing. But I recognize and appreciate their concern for my well being.

In any case, I share with you these my thoughts and any comments will be appreciated although I guess that most comments would be negative. Ha. I am still undecided what to do. Help!

It is now May 22, 2019

    We went back to Dr. Wolpe, the neurologist to hear what he had to say about the MRI. All clean, he says. No problem with spine or brain. Normal changes connected to old age but nothing to cause this.

   He put me on his table and ran through more tests and he could not connect anything with these spasms.

    So he prescribed a medicine called Baclofen, that is used to treat spastic behaviour of muscles like after a spinal injury. Other things too, but that comes the closest to fitting my situation. He says to start with a low dosage and after three days increase it a little, (if necessary) and continue until I get the results I am looking for, hopefully sooner than later.

If, after a month, he says he may ask for a lumbar puncture to check to see if there is some kind of infection or whatever in the spinal cord/fluid that could be causing this. He was perplexed but ran through many tests to see what could be causing these spasms. (as I am typing, the are doing their thing,  24/ 7, on and off.

    Anyway that is good news to me. No operation. So please pray for a good outcome. Thanks. Cas.

May 20, 2019

On the 14^th, I went to see my Eye Doctor, Casandra, who checked all but couldn’t get a good reading for the pressure int the eyes. She referred me to Dr. Pearse, an ophthalmologist who removed my cataracts. I went to see him the next day and he went through many tests but on in particular is of interest. It is the picture of the eye’s breadth of vision. The left eye was broad, but right eye quite narrow (glaucoma, destroys the peripheral cells limiting peripheral vision.)

 Ha. The picture was exactly the same as it was 6 yrs, ago when I first went to him. He was happy. He said that there was no deterioration in 6 yrs. Exactly the same. And it will be the same in another 6 yrs. The eye drops, every night, are working well. The pressure, 16 in each eye. He says, couldn’t be better. Nice to hear some good news once in a while.

It is now May 22, 2019

     Yesterday, May 21, Mike Pillay and his friend Benjamin, picked me up and took me to Hillcrest hospital where I was scheduled for another MRI at 11:30. We were supposed to be there at 11am and arrived at about 10:30 to check in. I was in my trusty wheelchair. A Doctor Rheeder (anesthetist) had decided to have a conscious sedation ready for me. Conscious but barely, like sleeping soundly though. It was past 11:30 and he still wasn’t there. I asked what was going on and was told that he was getting a 7month of child ready for a scan so we waited till 12:20. Then I had to get undressed and put on a lovely gown (underwear still on) but one that goes on frontwards. Ha. Have a wee and then he comes to push me to the room where the machine is. He asked me to climb up on the bed/table and I just looked at him. So he just picked me up like a new bride and laid me down in the machine, gave me a jab, and the next thing I Knew is that he was there saying it is all over. Finished. I was supposed to go see the neurologist who would go through the scan with me but because it was so late (about 4pm—I think the scan---whole spine and brain was about 1 ½ hrs. ). Mike had gone to fetch his kids from school and was back in time to take me home. Dr. Rheeder phoned the neurologist to tell him I wasn’t in shape for a meeting and he was sending me home. So, off we went, much like before, still a bit groggy and weak in the knees.

    I ate supper (hadn’t had any food since midnight the day before, except for a tiny sandwich which Mike’s wife had prepared for me). After supper, to bed since I didn’t think I would enjoy the news. Not much sleep last night but I phoned the Neurologist’s office this morning (Dr. Colin Wolpe) and his receptionist said there is a gap at 10:45 so I will be taken there, once again, by my friend Michael Pillay. I am anxious to hear what he has to say and I sure hope that he sees where the problem is so that we can get this thing over and done with and go back to some sort of normal living. In the meantime, I am requesting your prayers again and putting myself in God’s hands hoping for the best and getting ready for anything else. Take care. Fr.Cas

May 12, 2019

Dear Everyone. I have come to the conclusion that I have no real alternative besides postponing my home leave till next year. I am being plagued by constant spasms that are out of my control and this doesn’t allow me to live a normal life. The Neurologist and Neurosurgeon are going to look into the matter with a brain and spine scan (MRI). You can imagine how disappointed I am but….

I will keep you all informed about what is happening. I hope that there will be a happy ending. I am getting tired of hospitals now. I know that some of you have been there and done that so you know what I mean.

   In the meantime, loads and lots of love to you all and hope that I will see you all next year, the bionic, rewired man. Love and Peace, Cas.

May 10, 2019

There is more to this blog than I am including here but this is the most recent item.
I had an appointment with the neurosurgeon on May 7th, I told him that as far as I was concerned the spinal op was a success but ever since the knee op, the spasms returned again in full force. He had me check with Dr. Wolpe, the neurologist with whom he works and who made the original diagnosis. They then decided to have another up to date MRI.
     I went for the MRI yesterday, May 10th, and it was a disaster. Here is the report I wrote to the doctors....

May 11, 2019

Dear Drs. Van Der Merwe and Wolpe,

I am afraid that yesterday’s intended MRI was a disaster.

If my memory serves me right, I warned the team down there that I had involuntary spasm and needed some medication to cut out their activity. They said all would be taken care of. I reminded the receptionist, as we were waiting, that time was running out and we should be using this waiting time for the 30 minutes for the pill to take effect. Again I was told not to worry, all would be taken care of.

      I can’t remember taking any medication for the first MRI, but , as I had warned them, there were continuous spasm which I had no control over and the whole thing was spoiled.

    They then tried a second time and this time I remember the pill they gave me was not like the one you, Dr. Wolpe, prescribed. I guess that it was too weak because it too didn’t work.

     The third time (which never happened) I asked them to contact you, Dr. Wolpe, to get a scrip for the right pill (the pill that worked so well for the first MRI some months back. It was the tiniest pill I ever saw and only cost R8. Wow.

      On of their team volunteered to get the pill from the pharmacy with some of my money. She came back with two of those little pills and I put them under my tongue.

However, in the meantime, it was decided not to do the MRI today but to book the 21^st of May at 11am.

    In the meantime, the pills began to take effect. Wow. My legs turned to rubber and I had to have two hold me up, getting out to the car, getting into the car and then into the house when we finally got home.

    This morning, when I got up to take a shower, I still have more rubber legs than I expected and actually fell down at the entrance to the shower and again, after I managed to get upright again.Then I fell the third time and had to work my way on my buns to my bed where, finally, I was able to grab onto the end of the bed and lift myself up. I skipped the shower ( I was afraid to fall again) and went back under the covers hoping to sleep off the aftereffects of those powerful pills.

    I am really sorry to have wasted so much of your time, and I cursed the  source of the spasms.

    Dr. Wolpe, I think that if you get another scrip ready, I will come early to the hospital on the 21^st of May and collect the scrip from you and bring it with me to Jackpersad so we avoid a repeat of the last try.

     I  am really sorry, but I warned them that that was going to happen as I had no control over these involuntary spasms and they had to be put solidly to sleep if we wanted a good scan.

    Many thanks, again, for your continued concern.

Love and Peace, Fr. Cas. (James Lee Paulsen)

That's all for now. I am trying to sleep off the powerful effects of that pill that stopped the spasming.