Got the call to get to Dr Mareira’s rooms yesterday, neurologist with a brilliant reputation and a few months waiting list. Way to go Dr Jeans for getting me in. What a delightful lady she is! Discussed my prognosis and told her I was feeling great and hoped that I wasn’t wasting her time. She made me strip to my panties and bra ( yes they were decent) and then did tests including walking up and down….. You could say it was a bit embarrassing with this orange-peel body, but hey she couldn’t care less right?? She showed me the MRI on her computer and said I actually have quite serious damage to my neck, and yes the right side is worse. After many questions she came to the conclusion that yes an op would be inevitable. An artificial disc would replace the damaged one, a 3-6 hour op and 3 days in hospital. My choice, so discuss it with my hubby and then come back and see her. She is the best from reports I have heard and the more I speak to people the more I am convinced that she is the one to use. What’s the first thing Jan says………. Why don’t you go to SA and get a second opinion……. No surprise there. Here’s the thing!!!! Find a surgeon, get an appointment, do another MRI and blah blah blah!!!!! Nope!!!!! Technology today, her reputation …… May as well do it here. If I’m going to do it! As my Physio says, get the papers, set it up and I can always change my mind! Only question I did forget to ask was about the hospital and it’s after-care. Big worry after going through Michaels terrible experience…… Horrific experience, maybe one day it can be a chapter in my blog. Although I am more for remembering the happy times! But challenges in life and getting through them count for blessings too. As for the AS she gave me three things to remember and I seriously popped them out when she asked me to, no second thought; telephone, bicycle, red! Ooh now that I think of it was it right? Whatever the case she too is almost doubtful it’s AS and is sending me for my pre-op check-up with a Neurologist. So whatever comes from it, I might get a second opinion on this thing that is engrained in my brain and questions my every thought and action! Will I have the op? Mmmmmmmmmm check back in a day or two?
Friday was a great day after I had a good cry at the doctors office. Must have thought I was a blithering idiot….went in and burst into tears telling him I was tired of pretending I’m ok, when I’m not! Tired of being in pain and scared to do anything stressful in case the pain came back. Anyway after finding me a tissue to wipe my snotty nose and streaming eyes, I decided yes it was time to bring in the big guns….. A specialist neurosurgeon to see if an op was inevitable. So I am on standby as he has to pull strings and get me in.
I then went to see Mike playing T20 cricket which was rained out. Ended up with a few of the team’s folks and Mike’s team at The Mill and had such fun. So nice to get out and have fun. Pain was even minimal which was even more fun. Mike’s two team mates Cuan and Carl stayed over, such lovely boys. Went to watch 50 over game at St George’s and again had such laughs and fun with all the parents. Jan and I finally seem to fit in somewhere in this huge lonely town called Harare. So happy to see Jan let go. Peterhouse beat George’s by 130 runs, Adrian Kok got 110 which was wonderful to see.
Sunday morning Mike did a organized run and we then just chilled. Again minimal pain! Started sorting out Mikes applications for College…… Now that’s heart sore!!! My boy boy leaving at the end of the year. My Lee got to go to lunch with my school friend Trace, and our old Zambian friends Gail and Mark also visited her, she sounded so happy. So glad cos she seemed a little bit homesick. Miss her too much!
Tarien got an apprenticeship for two days a week for a skincare range in a Marketing position. So hope it comes to something, she has waited too long now and needs a job in Sydney to get on with her life.
Today I went to Physio and again was without too much pain. Starting to think Murphy is working again…..doctor organizing a neurosurgeon because I can’t bear the pain, and the pain is totally bearable ☺️.
About my AD….. A few name slips in my head, but just never vocalized them. I am learning slowly how to not always make an idiot of myself! ✔️ for me!
A night to forget, morning to be so glad to see. Went to bed feeling anxious and a bit shaky, dizzy and nauseous. Could not wait to get into bed to sleep. But sleep did not come, tears came, terror came and I just could not get it together. I tried to pray to give me calm but that just became mumbo jumbo . My brain felt fried and my head was all over the place. By midnight I thought I would phone Jan to make me feel better and calm me down but he was asleep. I sent him a message to please phone me when he woke up. I went through having Simba’s other girlfriend (huge fat mama) with her child lying on my bed kicking me off and me tring to get her to get off. To Dozie on my bed on top of me over and over again and me pushing him off. To someone screaming and crying for help and a child screaming even louder, realizing its Moila and child Tana….. and I couldn’t get to them but it wouldn’t stop. Eventually I realized it was all hallucinations, nightmares or dreams! Whatever it was it went on and on and I could not get out of it. Until Jan phoned at 4 to ask what was wrong? I told him I felt so terrible I just wanted comfort. I then cancelled my Physio at 8h00 and slept until 9. Felt groggy and shaky when I woke up but had a bath and pulled myself together. Met a few Moms at Willowbean to collect monies for 11 week motivational course boys are doing, and then proceeded to come home and spring clean! Just Imagine! Moved pictures, couches, tidied study….. Felt better. I went online to compare pill Donacept (from SA) and Donapezil (from here) to see if that could’ve caused “headcrazy” but exactly the same. Side affects are dizziness but is recommended a full glass of water be taken with pill. So putting it down to that…. Note to self …..Much More Water!!!!!!!
I have been trying so hard to feel better about my pain with regards to my shoulder and neck but just when I feel it is getting better, the pain comes back with a vengeance. My right arm is almost fully functional now but my neck is in agony. So right now I am thinking maybe I should just bite the bullet and see the specialist for a professional diagnosis. It just seems it is never going to end. I am trying so hard not to show my sweet hubby Jan that I am not in pain, he worries and truly cares for me and I hate the fuss!
I went to town this morning and needed frames removed from my car and could not for the life of me remember Bernard’s name. I wanted to call him and until my gardener said his name it was gone. Five years Bernard has been with us as a loyal guard……. Blank, nothing, zip. Biggest telltale sign for AD for me….. Forgetting names of people I know well!
I finished “Finding Alice” last night. Brilliant, her speech in the book at the end to an audience is phenomenal, I will post it here at a later date. The thing about this book is it tells the story of a woman with early onset AD and how she feels. It’s accurate for someone like me, but very very scarey because she goes downhill very very quickly! Not enough time for me, not nearly enough time! Also my family will not handle it, and I will not expect them to. They have got to put me In a home. I know it will kill Jan slowly, and I cannot bear to do that to him…………..
I turned on the TV this morning and a moment of blankness came over me when I could not remember how to change the channel. A few seconds only, but a simple task I do every day of my life. Doubt in self…… Check! ✔️
Mike came home on Sunday after he had been to my cousin’s sons, (Sean) 21st birthday party.
From the pictures on Facebook it looked like the party of all parties…… I wish I’d gone and wish I’d made a plan for Lee to go. She so wanted to but the logistics from school always becomes a problem. All the family was together and all looked so happy. Some I have not seen for so long and felt heart sore for not seeing them. They all looked so happy, and dressing up as hippies was the cherry on top. I was so glad to see my Mom looking so happy. After many years of being unhappy in many days of her life she told me this year she would change her life around and be happy. I really hope so, she deserves it but it has to come from her!
Back to the party. It has to be said at the end of the day family is so special, we all have our problems but we all care deeply for each other!
I have sent my maid home for a few days as the poor thing found out her husband who also works for us, has a girlfriend and a 5 year old son. They have a 4 year old son together. She cried to me for hours and was inconsolable. All her suffering, a widely used word here in Zimbabwe, poured out to me within these hours. She supports her whole family, he provides her with nothing, he lies about his money ……. On and on and on……and tears to fill buckets. I had given her money to send her little boy to school so told her to take that and go home. And use it to help her family and then
when she comes back we will give her money again. Her little boy stays here with her at our house.
The poverty in Zimbabwe is so sad, so shocking, fortunately we are blessed and help all the staff working for us as well as all in our lives. Jan is the most generous man around…….. But we give and give and give, and they keep coming back. My point is we are blessed but some days it just becomes overwhelming. Where is Bob Mugabe in this state “suffering”? Sitting in his mansion living the billionaires life!!!!!
Today I decided to catch up on my sewing! Jan’s pants and their hems (how?), Mike’s shorts (always torn at the crotch…. another how?) but I could not thread the needle on the sewing machine. I don’t mean putting the cotton through the needle, I mean threading it through the machine. I tried, laughed, “no man I’ve done this a million times”, (to myself) and tried again and again…. Finally I took the manual out and figured it out. A real sign of my slow beginnings of Alzhymer’s? Well maybe! So I proceeded to mark all the buttons on my machine. Length, width, tension etc. etc. some advice actually used from all the books I have, and am in the middle of reading.
I went to a talk for a course for Michael before that, “The Making of a Champion” with some parents and kids from Mike’s cricket team. Once again I screwed up on calling Keith Kevin….. The name thing again. Anyway standard joke with a guy called Adriaan who I called Paul all day, introduced me as Mandy. Cute! The lighter side …….. If only he knew, actually not, but you know what I mean.
For any of you reading this who have been diagnosed with early AD you will know it is a doubting game with almost every action you do. This is an inside scream which is hard to share. It’s a constant wonder, wonder if it is your disease causing the stupidity, wonder if it’s just normal. (No offense to the word “stupidity” but stupid and useless is a feeling I often feel). This leads to doubt and insecurity, within yourself. No one knows that it is constantly on your mind…. And I really am a positive person ☺️. But it’s there, all the time. And then there’s the wonder if your family who knows you have it, wonders the same thing when you do something unusual.. Or stupid 😉. Vicious circle I’m afraid.
I have a very strong faith in God. I do believe he has got me through a lot in my life. But I am not one to preach, never. I know my son also has a strong faith so I remind him often to pray and use it throughout his life. But my daughter Lee has too many questions and is still finding what she believes in. You may ask what this has to do with Alzhymer’s? Well when I tried to bring God up in a conversation in December she replied “If God was so good why would he give you, such a good person, a disease like this Mom, it’s just not fair?” It hit me like a brick wall, broke my heart actually. It made me realize she might need help with this. Where though, and how? I am still working around this! Not my belief, but the reason why she is so skeptical. It’s scarey!
So today was a really bad day with my speech! Fortunately only my immediate family knows my prognosis so I am sure no-one is aware of it! I hear the frustration in Mike’s voice but I realize he does not put two and two together so I let it go. Note to myself ……. Write letter to Jan and kids to have patience and forgive me when I am slow! My friend Nicola drove us to school today to Parent/Teacher meeting and to fetch Scott and Mike. This because last night I had a black out and Jan came home to me sprawled on the floor and the dog’s going mad. Don’t know how long, don’t know what happened but when I woke up I was on the floor,with Jan holding me. I was fine after that, guess I was just exhausted, I had felt dizzy all day. My dogs were really in a state if you can believe that and cried and followed me around all evening. Max slept next to my bed, almost on top of me, and continues to be even more vigilant about where I am and where I am going. Poor thing traumatized.
So Jan said I will not drive…… So I listened. Hate what I am putting him through, hate that I am so useless at the moment. I went up to three times looking for things today, and back and forth trying to remember what I went for in the first place, well at least I am getting exercise. My neck is what hurts now, not so much my arm……. Must mean I am getting better, well my arm is certainly moving a lot more. Yippee!
Reading “Finding Alice” about a woman at 50 diagnosed with early Alzhymer’s. So very sad, she deteriorates so quickly, I pray to God that won’t be me……… I pray to God my family listens to me when I say they need to put me in a home and not be my caregivers when I don’t know what is going on around me. I wish to be remembered as the person I am…….. NotThe person I have become with AD……. How awful!
Hoping for a better day tomorrow. Still a good day today as pain subsiding day by day!!!!!