An Unexpected & Stunning Turnaround. A Health Update

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Last November I posted a health update that reflected a rather bleak outlook for 2019. I had watched my physical health deteriorate under the influence of Parkinsons to the point that most days were spent with hours of disabling tremors, a window of functionality that might last anywhere from one hour to many hours, followed by many hours of dyskenesia.

I was scheduled for a promising new treatment in February 2019 but this was cancelled when it was discovered that the other disease rattling around in my body, chronic lymphatic leukaemia (CLL), had advanced to the point I would need chemotherapy. The lowered immunities chemo brings meant the Parkinsons treatments would need to be delayed.

The outlook was made a little more grim when a late January consultation revealed that the type of chemotherapy I required would leave me with permanently lowered immunity. This would put the Parkinsons treatments permanently out of reach.

But at the same meeting a glimmer of hope emerged. My haemotologist suggested that I try an alternative treatment for CLL. This is very new but has proven to be extremely successful in keeping CLL under control. I will join a trial at the end of 2019, and given an improvement in my blood levels since the previous visit, my doctor was confident we could wait til then.

And so it is that two weeks ago I was able to start a new Parkinsons treatment. This sees me wearing a small pump that sits in a bum-bag like holster around my waist. It pumps a steady and continuous dose of medication into my body via a tube that reaches down into the duodema, a place in the small intestine that rapidly absorbs liquid medications.

The results have been incredible. From around 6am to midnight each day I have been spectacularly free of debilitating tremoring and dyskenisa. I still get some patches of tremoring and dyskensia but these are very mild, infrequent, and not debilitating. It is as if my body and my life have been given back to me. I have recovered energy levels of old. I am doing things I never thought I’d do again – cooking meals, taking walks, writing, spending a full day working, getting out of the house without any concern that my body may seize up or send me into dyskensias. I anticipate getting my drivers license back, getting out in my boat, and taking holidays with Sandy and the kids.

At the moment the tube delivering the medicines into my body runs through my nose. Not the most attractive look! On April 2 the tube will be removed from my nose and surgically implanted through my side.

The treatment doesn’t cure Parkinsons but controls the symptoms. Like all existing Parkinsons treatments it will eventually prove insufficient. But for now its given me a window. I don’t know how long. 2 years? 5 years? More? However long it may be I am relishing this unexpected and stunning turnaround.

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Bev Murrill
1 year ago

Praise God for advances in medication like this. That’s absolutely brilliant, Scott. I have thought of you often since I read your post about the Parkinsons so I’m thrilled to hear this. Emmanuel.

Shane Clifton
1 year ago

Love this. So pleased to hear some good news, and i hope that your unexpected joy lasts for as long as possible.

Stephen Logan
Stephen Logan
1 year ago

So happy for you, what a fantastic turn around for you, I’m sure you are thanking God for such a blessing to you and your family

Becky Bauer
Becky Bauer
1 year ago

Such great news Scott! So happy for you mate!

Sue Jennings
Sue Jennings
1 year ago

Great news Scott. Enjoy your new found life for as long as it lasts. Hopefully many years until the next emerging treatments are available

Fiona Jones
Fiona Jones
1 year ago

Such wonderful news Scott. So glad to hear you have been able to get back doing the things that you love. Thank you God!!

Natalie
Natalie
1 year ago

Fantastic news, Scott! Brilliant that this has given you back the life you love. Go well, my friend.

Justine bennett
Justine bennett
1 year ago

Congrats Scott. What great news. Long may it last.

Sue Chamberlain
Sue Chamberlain
1 year ago

This is amazing and wonderful news, Scott. I am so happy for you and your family. I am sure you all are relishing this new and renewed life you now have. I am thankful to God and modern medicine with you. …
🤨.It puts a whole new slant to the silly saying “Up your nose with a rubber hose”!!!! 😁

Shelley Taylor
Shelley Taylor
1 year ago

So happy to hear this Scott! Enjoy! No doubt you will make the most of it.

Kelli
Kelli
1 year ago

Wonderful news. Such a blessing for you, your family and all of us who respect and admire you.

Geoff Broughton
Geoff Broughton
1 year ago

Great news Scott. Wonderful, simply wonderful.

Kim Hawgood
Kim Hawgood
1 year ago

So good to hear this news Scott. You embrace positivity in the good and the bad. And you inspire us all.

Janelle Lamont
Janelle Lamont
1 year ago

Such a wonderful turn around for you Scott! Such great news! Very happy for you and your family. So great for you to be able to experience such an unexpected and positive step forward in technology that changes things for you so dramatically… and enhances your quality of life. Wonderful to read this!

Tania Harris
Tania Harris
1 year ago

Whoot! We’re rejoicing with you!

Keith Mascord
Keith Mascord
1 year ago

Dear Scott. What wonderful news. Am SO pleased for you. It is just such a stunning development, given how bleak 2019 was shaping up to be.

Faye Hudson
Faye Hudson
1 year ago

So happy to hear of the improvements in your health.My thoughts and prayers are with you as you go forward.Praise God for the medical staff who are helping you.xx

Elizabeth (Libby) Sorrell
Elizabeth (Libby) Sorrell
1 year ago

Great news Scott, It must be wonderful having your normal life back most of the time

Amand
Amand
1 year ago

Wonderful to have positive medical news Scott.

greg wood
greg wood
1 year ago

Praise God! So wonderful to hear this Scotty. It’s an amazing answer to prayer.

Emily's Nephew
Emily's Nephew
1 year ago

That is just wonderful news. God is good!

Dave McNair
Dave McNair
1 year ago

Scott thanks for sharing about your health. Great to know you a window of vitality given to you.

Lyn Davey
Lyn Davey
1 year ago

I’m so pleased to hear this Scott. xx

TED LEASK
TED LEASK
1 year ago

HI Scott,
This is certainly a refreshing change for you amongst the tougher days. We have a family member also living with the daily challenges of parkinsons. He has had a deep brain stimulator fitted for a handful of years now that wins him mobility and capacity that would be hard to gain with out it. It’s wonderful for you to gain capacity back. It’s an amazing time in medicine and technology and the capacity to help when it’s difficult. Thankyou for your postings. They make for deeply challenging thinking and reflection.

Wendy
Wendy
1 year ago

That is wonderful news that you can have some quality time with your family and for yourself (doing what we all take for granted).
I hope this reprieve lasts a long time.
Wendy

Helen Wiltshire
Helen Wiltshire
1 year ago

Praise God. What a wonderful turnaround for you and your family. I pray that the surgical implant of the tube is successful and does not set you back in any way.

Elizabeth Jenner
Elizabeth Jenner
1 year ago

Thank God for your improvement. Wonderful.. blessings

HUGH MORGAN
HUGH MORGAN
1 year ago

Scott, that is wonderful news. Praise the Lord. So good that you can enjoy the great moments of life more fully. This will be so good for Sandy, your children and your wider family too. We will keep praying Bro – Blessings, Hugh & Dianne.

Chris Roberts
Chris Roberts
1 year ago

I had missed this post in Feb. such great news! A friend of ours has used this treatment successfully too for several years. Yay!

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