dystonia, Just wobbly life

The revitalising power of the sea!

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Nothing quite like the seaside to calm the soul

It has been one of those weeks. One evening out, to discuss scarecrows of all things for the village Scarecrow Festival, meant three days of bed recovering. The joy of being a spoonie!

Today I longed to be out at the sea, even if it was looking at it through the car windscreen. Anti sickness meds taken and dosed up with yellows, off we went. It was heaven. We are so lucky to live close enough to the sea we can be there under an hour. We really need to go there more often especially on days the children are at school and the tourists haven’t arrived yet.

#wobblylife #seaside

The sound of the waves, the smell and salty air calms your soul and wakes it up. It is a truly revitalising experience.

The tide was coming in so I was able to hobble with help of my daughter to the sea. Shoes off and jeans rolled up, we went on a slow walk to the water. The baby turtles on the nature documentaries are faster than me. There is nothing like the feel of damp sand squishing beneath your toes to make you feel happy.

#wobblypaddling #wobblylife

I learnt that, being low on dopamine means you can’t leap up and a way from freezing cold waves. Instead you have one leg that freezes causes you to stumble forward needing to be caught by your hubby.

I do miss the ability to walk along the shoreline for miles with my husband. In the past I would be walking, skipping and jumping into waves with energy to spare. My husband would hold my hand for romance, not as a carer making sure I could get from A to B without falling over. Now the effort to walk the few metres  to the water while fighting a leg that is insistent on spasming and twist is tiring. I miss running to the water’s edge jumping over incoming waves with my daughter,laughing as the cold water makes  you squeal. I wish we had done it more when I could and appreciated those moments a lot more.  But I guess life changes and you have to look at the positives. I am lucky I have a great family as well as yellows so I can have days like today and still paddle in the sea*.

 

*If you take at least one step in the sea and get your jeans soggy, it is still classed as paddling.

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dystonia, Just wobbly life

What a night, what a weekend!

Last weekend was definitely an “up” moment in wobbliness. Hubby and I went to see David Gilmour at Royal Albert Hall! The gamble of buying tickets so far in advance paid off – THANK YOU BRAIN!

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Buying tickets and arranging nights out have become a big no-no in this household.  Not only is money tight and not to be wasted, experience has taught us there is a high chance  dystonia or vasculitis will cause  the whole proceedings to fall apart at the last moment. Whether it is because of pain, extreme fatigue, spasms or hospital admissions.  As soon as my body realises I want to do something exciting and fun, it hatches up a plan to play up like an irate toddler having a tantrum. All the excitement you feel and hopes you have are smashed. You are left feeling fed up, angry, envious of those getting ready and enjoying themselves as well as guilty for letting others down. That is on top of wasting your money. Tickets for theatre and gigs not transferable or refundable.  Selling them online is near impossible as there is not much demand for wheelchair tickets. Nights out as a spoonie are organised with  precision not on last minute whim. I have lost count of how many nights out have been cancelled over the years.

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This time my brain allowed me to have a night to remember. David Gilmour is my husband’s hero and I wanted him to experience seeing him live again. We saw him in 2006 when my wobbliness was just a little wobble in comparison and I could  limp through London and the underground system. How things change.

The Royal Albert Hall was fantastic, the architecture fills you with awe and they provided disabled parking directly outside the door we entered. One bonus of being wobbly! No hassle of managing the wheelchair through the city and our sat-nav found it without a hitch (getting out of London was a different story but that did not matter). Inside the area was easily accessible and close, unlike someplaces that are like a rabbit warren to get you to your place. The seats gave a perfect view of the stage and what a show! David Gilmour was amazing and I feel so lucky to have gone to see him. I feel very grateful that my body behaved as well as it did. It did not matter my hands curled up and my brain could not work out how to get them to clap or stand when everyone else did – I was there and I can hold on to the memories to be recalled for a lifetime. #100happywobblydays

Now I have to work out how to convince my brain to behave for Christmas.

dystonia

PD or not PD: the results are back!

I finally got a letter from my neuro with the results of my recent DAT scan and it was all normal – YAY!!! It is definitely not Parkinson’s disease.

Me – if I could still dance around the kitchen

I can breathe a sigh of relief and that niggle in a box, never to be dwelled on again (hopefully). Though, I had got my head around it either way as it would not change my meds or current daily life, my main worry was the risk of dementia*. More than the deterioration of  physical abilities, losing myself and recognising those I love was the scariest scenario. Even at times when I can not move and feel trapped in my own body, I am still me! I can still think my thoughts, dream my dreams  and love all thing I love until my next dose. To lose that is my ultimate nightmare. With the knowledge my brain cells are there, just not behaving means I can stop festering  on that thought in the middle of the night. I am sure it will come up with some other worries such as the genetic nature of DRD but they are for another day.

Today I am grateful for a normal result and magic yellow ones!

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* My fear of dementia in association is common ( it gets talked about in the media) but it doesn’t happen to most people with PD and depends on many things. There is more info at Parkinson’s UK (who are great for support and advice) – Parkinson’s and dementia