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| Front: Lorraine, Karin, Neill - Back: Hugh, Karel, Elizabeth and Emlyn. |
Four very important events took place over two days, all connected to MSA.
I had two visitors that I had not seen in years. It was a joyful occasion and full of meaning as well as demonstrating that indeed the world is small and providence does exist! The Lord works in sometimes silent ways, however always with direction and compassion! He most certainly "talks" to us. I had known Karin and Hugh Holtzhausen for years. Hugh and I were colleagues when we were both in the Paint [Dulux] industry and I had met his wife Karin. She is well known all over the world through her compassionate care of Sonja Van Rhyn during her journey with MSA. It had been around 18 years since we last saw each other and it was MSA that brought us together again. How difficult for Karin, having two friends suffering from MSA, one already passed on to heavenly heights.
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| Rt. Revd. Bishop Vincent Zungu OFM blessing the Defeat MSA Awareness Shoe. Elizabeth and Neill with the Bishop |
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| Our "Getting to know you" Tea Party group in Port Elizabeth |
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| Karin, Lorraine, Elizabeth, Emlyn, Neill & Karel my Carer. |
The third event was so very special. Meeting the warrior Elizabeth and her Husband/Carer Emlyn and Lorraine who cares for her husband Alan made MSA more vivid for me. Knowing that there were real people out there who live very close to me was hugely comforting. Just sitting around discussing our problems, sharing ideas, exchanging experiences benefited each of us. I am sure it will be the first of many more get together's.
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| Karin, Me and the late Sonja Van Rhyn's Wheelchair. |
The final event was bitter sweet. While relocating Johnny Van Rhyn's home, Sonja's husband, Karin and he where discussing what to do with Sonja's belongings, always a delicate and difficult task. Karin suggested that one wheelchair, that was specially made for Sonja, be paid forward onto me. Johnny and his two sons, Loubser and Chris immediately agreed. I was both humbled and honored that a "part" of Sonja would be with me as my disease deteriorated. I too, when the time comes, will find an MSA warrior to pass the wheelchair onto. Thank you Johnny, Loubser, Chris and Karin for thinking of my needs going into the future. Sonja and Karin's journey together is well worth a read and may be found here
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| Retirement |
Generally, the past few weeks have been alright for me. With the visits of friends, new friendships, lots of excitement. Very early on in my retirement (not even two weeks), I have discovered one aspect I do NOT like! That is the lack of interaction with other human beings. I never ever thought I would miss this! I suppose it is because of the very active and interactive life I have led over very many years. What I DO like, is not having to set my alarm except for reminders to take my meds!
From the disease point of view, the ups and downs of MSA remain with me. From the Urology point of view, all is reasonably well with ongoing use of Doxazosin, plus a new daily dose of 100 mg Macrodantin antibiotic, or one can categorize it as an "internal" disinfectant to help keep UTI's away! At my last visit a week ago, we discussed the various methods of catheter use that will confront me down the line. I have almost lost all feeling in my thigh ad pelvic region and from time to time do not even know I am urinating. This is becoming an embarrassment during the day and an obvious hassle at night. I simply cannot afford the very costly adult diapers. A permanent catheter is going to be the only solution to improve quality of life. Now just to choose what method.. I will probably opt for Foley. The double dose of Carbilev (Carbidopa/Levodopa) that the Neurologist suggested has not helped at all. Ataxia and Tremor is about the same. I am certain that at my next visit, the drug will discontinued. It most certainly helps PD patients, however does not appear to help us in the long term. Of all the symptoms we suffer from, the most debilitating and frustrating for me is the total exhaustion! I simply cannot do what I would like to do and when I would like to. Everything is geared around exhaustion. When I am up and about, I need to get things done as fast as possible, for I know in a few hours I will be on my back again.. resting!!!
Thinking and praying for all the MSA warriors and the carers out there!
[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]
Keep safe,
Neill
Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses rapidly and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com
