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Flossie88’s Story

In Feb 2011 whilst painting the house Baz slipped a disc and whilst in hospital was diagnosed with severe aortic stenosis and was advised a valve replacement.

At the same time I was having some gyno problems and in April was diagnosed with uterine cancer. So… on the 5th of June Baz had his valve replaced and on the 21st June I had major surgery.

How could I have missed it?

We both recovered amazingly in about 6 weeks we were back playing tennis, riding our bikes, and swimming everyday. In September I started chemo every 3 weeks for 6 sessions, but we continued all our activities. Life was good. It was when I finished chemo in Jan 12 and we went skiing I knew something wasn’t right. Baz was very anxious, becoming depressed and could only turn one way on his skis, very frustrating. He said when he looked in the mirror he saw his dad (who had PD) looking back at him.

OMG. How could I have missed it? I was aware of the strange odor on his clothes just like his dad had, the speech quietening, not blinking, pin rolling of his fingers, but NO tremor and so active, how could he have PD. We saw a neurologist privately who confirmed it was PD and started him on Azilect.

Went to our GP who tried to refer him to a neurologist but as the waitlist was so long referred him to a geriatrician with a special interest in PD at the local Frail old persons assessment service! (he was only 63!)

She is truly amazing, so supportive, on the ball, and treats us both as part of the team in decision making. Baz was started on a low dose of Premipexole and the depression and Anxiety went almost overnight.

Over 5 years the dose was increased by a small amount at a time and we continued on our journey, playing tennis 2 hrs twice a week cycling 45-50 km twice a week, 10000 steps every day. Skiing 3 weeks every winter, a road trip to the USA every year Baz doing all the driving me all the navigating and map reading.

Staying active and working

After a week at the European Parkinson’s Therapy centre (which was life changing) we returned home and decided to turn our bathroom into a walk-in shower room. As this went well we decided to put a new kitchen and bathroom in our rental Property. Everything took Baz a lot longer than it used to but I wouldn’t let him give up. Our roles were somewhat reversed, whereby I was now the project manager and under supervision, he was still able to undertake most of the work. Including making all the units with the circular saw plumbing, tiling, flooring, what a team!

After 5 years He started On Madopar 100/25 TDS and for a few months all was well. Then he had a rotator cuff tear and a ruptured bicep. Not being able to ride his bike or play tennis for 3 months he took up power walking. Unfortunately this didn’t stop him putting on a bit of weight.

Baz decided he would like to loose a stone and get back to his ideal weight, so we both went on a diet. It worked, we both lost a stone but because it was high protein it really messed up the PD. Dyskinesia and dystonia started as did long off periods. I think it upset me more than Baz .What were we going to do now?

It’s hard to believe he has PD

Firstly back on the bike and back on the tennis court! Secondly Back to the drawing board. Between the team it was agreed that Baz reduce his protein in the mornings, reduce the dose to 50/12.5 every 3 hrs. (still 300 a day).

First thing wasn’t enough so has 100/25 then 50/12.5 2 hrly. As long as I don’t poison him with protein this is working well! Yes the PD has progressed slightly over 7 and a half years, yes Baz has some tunnel vision, yes it is an inconvenience at times, I have taken on all the finances, I try to keep life as stress free as possible. We still lead a very full and active life between our home in the UK and our second home in Spain.

Whilst in Spain I have the old Baz back. We live outside, socialize all the time, cinema, meals out, friends around, play tennis, and cycle every week. It’s hard to believe he has PD.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Chris H. moderator
    2 months ago

    Thank you so much for sharing this, @flossie88. It seems you’ve both come a long way from some tough health challenges. It’s wonderful to read how active and engaged you keep one another throughout the PD journey. Thanks again. – Chris, ParkinsonsDisease.net Team

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