TOP TIPS
These are just a few of the top tips that KD-UK has picked up over the years. Please E-Mail sam@kd-uk.com if you would like to share your own.
Avoid Falls
Falls are a major hazard for people living with Kennedy’s Disease, and the risk of a serious injury is exacerbated by the fact that many Kennedy’s Disease patients suffer from Osteopenia (brittle bones).
Most falls occur in the home and KD patients should, as their disease develops, consider installing nonslip tiles in their bathroom, reducing clutter around the home, removing rugs, and installing handrails wherever there are steps. Early installation of a stair lift, or home lift, should also be considered and an equipment grant from the MNDA could help with the cost.
You should also learn to re-educate yourself to SLOW DOWN and be much more deliberate when you move about the house. You need to accept that you can’t do things at the same pace you used to. Easy to say but quite hard to do.
Daily Balance exercises, and regular hydrotherapy, are also excellent tools that can reduce the risk of falling, especially for people living with the disease who suffer from significant peripheral neuropathy.
Share Your Diagnosis
There is no stigma attached to having a disability.
Although it is clearly a very personal decision, the team at KD-UK would encourage you to share your diagnosis with friends, family and your social contacts. It is highly unlikely to have a detrimental effect on your relationship with them. Understandably, it’s more difficult to decide when to share your diagnosis with your workplace as it may have unintended consequences. That said, most employers will be supportive.
As Kennedy’s Disease is a genetic illness your diagnosis will also impact on your next of kin and wider family members. Do encourage them to catch a breath, and visit a genetic counsellor, before they rush off to get tested. There are many circumstances when it is best to avoid testing before having symptomatic illness.
As the disease progresses, don’t be afraid of asking for help when you need it even if it is simply asking a stranger to open a door for you or a house guest to carry the wineglasses. Contrary to what you might believe, almost everyone takes pleasure in providing support to people with a physical disability. You may fear that you are being a burden, but it is highly unlikely that is how people will perceive it.
Don’t forget to manage your mental health. Living with a progressive disease does have its challenges and taking time out to talk through your worries with a mental health professional can be time very well spent. Your GP should be able to refer you.
Have a Positive Mindset
A Kennedy’s Disease diagnosis is not a life sentence. Almost all Kennedy’s Disease patients can live active and fulfilling lives with a normal or near normal lifespan.
Your world will inevitably shrink a little as the illness progresses, but you need to focus on the things you can do as opposed to those you can no longer do. For example, you can swap golf for bowls (golfers make very good bowls players!) or swap hiking for photography.
Save up and buy the equipment you need to keep the world open to you for as long as possible. That might be a small portable scooter you can take with you on an aeroplane or a simple car adaptation to make driving easier. An MNDA grant may help with the cost.
If you really are short of things to do, you can always fundraise for KD-UK or become a charity Trustee!
There is no room for self-pity with Kennedy’s Disease. Maintaining a positive mindset will make living with the disease much less of a burden for both you and the people around you.
Pay Less Council Tax!
There are grants available through the MNDA, which are not means tested, that can help you with the buying of equipment. Don’t be afraid to access the grants. You are entitled to them and, as you will have probably found out, living with a disability can be expensive.
If you have had to specifically adapt a bedroom, or a bathroom, in your home you can contact your Council to request a one band reduction in your Council Tax (most but not all Councils support the scheme). It is simply a question of filling in a short form which will be followed up by the Council with a home visit.
Don’t be afraid to apply for a blue badge when your mobility becomes restricted. The issuing authority in your region is very likely to approve your application if you share a copy of your Kennedy’s Disease diagnosis letter with them. It will help you save on car parking charges and will dramatically reduce walking distances.
As the disease develops, you can benefit from reduced charges at many theatres, sporting events, and attractions. Do make use of these concessions as they will help to improve your quality of life. You should also take advantage of the free seat selection offered by most airlines and the assistance they offer with getting through security and passport control.
Engage with the Kennedy’s Disease Community
Do engage with the Kennedy Disease Community. Kennedy’s Disease conferences, and patient days, are great places to pick up tips on how to manage the illness. You will inevitably leave these events better informed, and with new friends.
Online Facebook groups are great places to exchange experiences and pick up the latest KD Community news. For example, KD-UK is active on Instagram and Facebook. Running a fundraising event for Kennedy Disease research can also be very rewarding.