My battle with cruel disease
Heather Greenaway
SANDY Patience has spent his entire life watching loved ones being taken from him by Huntington’s Disease.
He was just 21 when his beloved mum Margaret slipped away in 1984 and last year his sister Helen lost her battle with the incurable genetic condition, which has a 50 per cent chance of being passed from parents to children.
In 2017 Sandy was given the devastating news that he too has Huntington’s and, that over time, he will gradually lose the ability to walk, talk and swallow.
But instead of getting angry and accepting his fate, the dad-of-one is tackling the terminal condition head on by taking part in a two-year clinical trial to find a treatment for the disease.
Sandy, who is originally from Avoch on the Black Isle but now lives in Inverness, is one of only nine people in Scotland taking part in the Roche Generation-HD1 study, which aims to find out if a new gene blocking compound can slow the progression of Huntington’s.
The ex-railway signalman has been travelling to Aberdeen Royal Infirmary every two months for injections in his back – not knowing whether he is getting the trial drug, manufactured by drug company Roche, or a placebo.
Sandy, who married to community nurse Laura, 58, said: “I’m not doing this for me, a cure will come too late for me. All I want to do is give people hope. I’m just praying something good comes from it.
“Huntington’s Disease has had a massive effect on all my family. Everyone I have ever loved has been affected by this illness.
“My mum was 59 when she died and although I was only 21 at the time, the hurt is still raw. My grandmother also died from HD. She was one of 11 and several of her siblings had the gene too.
“Then last year I lost my dear sister Helen. I had to watch helplessly as the illness robbed her of everything apart is from her wonderful wit. Seeing family members suffer and understanding that might also be your future is a very difficult thing to deal with.” Sandy, who found out in 2019 his daughter Kimberley, 30, did not have the HD gene, admits his diagnosis on December 4, 2017, was one of the worst days of his life. He said: “I was absolutely devastated. I even asked my dear wife Laura to find someone else because of my understanding of my diagnosis, because I loved her so much. Her response was the same back ‘but I love you too much to leave you’. I was at such a low point I didn’t know how I could go on but fortunately that feeling didn’t
Sandy Patience is involved in a bold new initiative tackling the incurable condition that devastated his family, writes last long as a few weeks later I watched the BBC News at lunchtime and it was saying about the success of the phase one trial for this study. I nearly fell off my seat.
“I had waited 50 years for news like that not, just for me but for everyone – my mum and sister who are no longer here and all the people who have been affected by this around the world.
“As soon as I saw the report I thought ‘I’ve got to chase this, I want to be one of those to take part and play my own small part in taking the fight to Huntington’s.”
Sandy added: “I’m hoping against hope I am on the trial drug but even if I’m on the placebo, the trial has had a very positive effect on my life. From a real place of darkness I am now able to focus on the good.
“To me it’s a privilege to take part and I feel like this is what
I have been born for – to make a difference.
“Finding out I have not passed the HD gene to my daughter and my beautiful grandchildren Harrison, Hope and Sofia Rose and being part of the trial gives me a reason to celebrate life.”
Professor Zosia Miedzybrodzka who is leading the trial at Aberdeen University, said: “There is a long way to go yet, but the trial does offer real hope to families with HD.
“The volunteers taking part are playing an important role for the entire Huntington’s disease community.”
Alistair Haw, CEO of Scottish Huntington’s Association, added: “Sandy is an amazing ambassador for the Huntington’s disease community.
“His continued willingness to share his own experiences to help others is nothing short of inspirational.”
YOUR home may need a good spring clean after a long and difficult winter, but your finances probably need it even more.
The last year has been tough on many people’s pockets, so now is a good time to have a proper tidy up.
Cutting spending, paying down debts and building savings for the future should set you in good stead for the year ahead.
Find out where you stand
Now is the time to blow the dust off your bank statements and work out where all the money is going.
Pauline van Brakel, chief product officer at money app Yolt, said: “Take a look at your essential outgoings, such as rent or mortgage, council tax, insurance, energy bills and groceries, to find out how much you need to get by each month.
Subtract that from your income, to see where you stand and make sure you are living within your means.”
Avoid financial regrets
Our two biggest financial regrets are failing to save for a rainy day sooner and waiting too long to start a pension, according to Hargreaves Lansdown.
Personal finance analyst Sarah Coles explained if you are kicking yourself don’t leave it any longer. She said: “First, build a pot of cash with easy access, ideally six months of salary to see you through emergencies. Then look to the long term by saving in tax-efficient pensions and Isas. Do the right thing automatically by making regular savings and inves tments.”
Balance your debts
If you’ve run up credit card debt, consider switching it to a zero interest balance transfer card.
Borrowers can save £676 a year in interest by transferring the average £2177 debt, according to online credit score experts TotallyMoney. Chief Alastair Douglas said : “Introductory ‘honeymoon’ rates are getting shorter but there are still some good deals.”
Sainsbury’s has an interest-free balance transfer card with an introductory rate lasting 29 months, subject to status – but with a three or four per cent transfer fee. It has a card with no fee but a shorter intro period of 18 months. Make sure you clear the balance before the full APR kicks in, when you could suddenly pay 21.95 per cent. If your debts are piling up, get free advice from Citizens Advice or debt charity StepChange.
Get cheaper car cover
The average car insurance premium fell by £100 to a six-year low of £627 in January, according to Comparethemarket.com. Motor insurance head Dan Hutson says car owners will only benefit if they shop around rather than renewing their existing policy.
Switching saves up to £250 but Hutson argues don’t leave it to the last minute. “Plan a month beforehand to find the best-value deal.” Don’t just sign up to the cheapest policy, check it has everything you need.
Show energy
Energy bills have gone through the roof in lockdown and will increase again as the energy price cap jumps by £96 on April 1. The average customer on a standard variable tariff will then pay £1138 a year for gas and electricity.
Uswitch.com energy expert Sarah Broomfield says British Gas, EDF, E. ON, Scottish Power and Npower are all hiking bills to the cap – but the market-leading fixed deal from Avro Energy costs just £945. “By shopping around for a better deal, you could save £193.”
Check your bank account
Happy with your bank? If not, it may be time to start afresh. Online and telephone bank First Direct is offering a £100 “welcome” to new customers who switch to its 1st Account, while Virgin Money is giving away 12 bottles of wine worth £138.
To qualify for these deals, you must be a new customer, switch all your banking through the Current Account Switch Service, set up
two direct debits and pay in at least £1000.
Trace lost s
Tens of billions are sitt bank accounts, investm pension policies. Even of money years ago, it you. You can trace mi building society acc charge at Mylostaccou the Pensions Tracing S you find lost persona plans.The Unclaimed will help for a fixed £2
Time for cl
Sweep up all your old cashback deals, gift ca points, and put them It’s easy to lose track expiry dates. Failing to throwing money away out your home and f same time. Have a cle stuff at a garage or car restrictions have eas sites like MoneyMagp
Save fortun mortgage
If you have a mortgag
lean up ne on
e, it may be one of your biggest monthly costs, and offer some of the largest potential savings.
One in four pay over the odds on their lender’s standard variable rate, broker Habito says.
Standard Variable Rate deals at the the top six lenders cost on average 3.53 per cent, yet new customers can get two-year fixed rates starting at 1.26 per cent.
Somebody with a £150,000 mortgage could save up to £4080 per year by switching. If your income has fallen or you have taken a mortgage payment holiday, your lender may still be open to a product transfer, or speak to a mortgage broker.
Update your will
Three in five adults haven’t written a will, which means their assets could go to the wrong people.
Neil Jones, tax and estate planning specialist at Canada Life, said this is even more important following marriage or divorce, new children or grandchildren, or the death of a beneficiary.
Getting started is the hardest part but the reward is peace of mind.
Jones says: “You don’t have to worry about bequeathing your loved ones financial difficulties.”
The Ministry of Justice has helpfully legalised “remote witnessing” during
lockdowns.
Save for a splurge
In these difficult times, everybody needs something to look forward to. Reward yourself for cleaning up your finances by planning a treat for when lockdown is finally over. Whether that’s a weekend away, a party or a holiday in the sun, you’ve earned it.
Dear Coleen
MY daughter dropped the bombshell last week that she and her fiance plan to have a small, intimate wedding with no fanfare or big party, which has really disappointed me and my husband. They don’t want to wait until the lockdown restrictions are lifted for celebrations and said they are happy for it to be the two of them.
I think my husband is most disappointed, as she is our only daughter and he always imagined himself walking her down the aisle in a church ceremony.
What makes it harder is that both our sons got married abroad a few years ago and we weren’t there either, although both of them did have celebrations when they returned, which we attended.
This has really upset us, probably because we’ve felt so cut off from family over the past few months. I don’t want to upset her by making a fuss, but at the same time I feel I should tell her that we’re disappointed. I’d love your advice as I don’t want to say the wrong thing and cause a falling out.
Coleen says
I THINK you can share how you feel with your daughter but also tell her you love her and understand it’s her life and her decision.
But I think it’s OK to acknowledge that you’re disappointed to not see her get married.
They could still have a tiny wedding and have both sets of parents present, but perhaps they’re worried about upsetting people by doing that.
The bottom line is, you have to accept and respect the decision and you will get over the disappointment. Perhaps when all the restrictions are over, they will have a party to celebrate.
I think this is hard from both sides because I’m sure your daughter and her fiance don’t want to upset you or anyone else.
And what I find lovely is that for them getting married is not just an excuse to have a big showy party and wear a lovely dress (which it is for some people), so I think that says a lot about their relationship.
They just love each other and want to be married and that should be reassuring for you as parents that it’s a good decision and they’re committed to each other.
“My husband had imagined walking her down the aisle