Last Saturday I went along to the Aylesbury Parkinson’s Disease support group and gave a presentation on eating well. I think it was a much appreciated session, there were lots of questions and people seemed to be very grateful for the information.
Hydration is a big problem. There are so many reasons why something as simple as taking a drink can become a challenge. Tremor and spasm can result in spillages and make someone only half fill their cup so needing more cups to get the fluid they need. Mobility issues making trips to the toilet a trial can easily result in a desire to drink less in the hope that this will result in fewer trips – this can have the opposite effect as the more concentrated urine irritates the nerves in the bladder more and can result in increased frequency and urgency. Having periods being ‘frozen’ and unable to easily get a drink also can reduce fluid intake. Drinking can be challenging if posture is poor, many people with Parkinson’s Disease struggle to sit up straight and lift their chin from their chest. This makes lifting a cup particularly difficult. A straw can help but sucking can be difficult and a valved straw drinking system may be a solution. For some, dysphagia can mean swallowing liquids particularly difficult.
Having a sports bottle of water close to hand can be a help as it can be squeezed to get the fluid out, it can be left on a table by a favourite chair or by a bed and it is difficult to spill if tremor or spasm is a problem. Other useful things are travel cups that keep hot drinks warm and have a lid to prevent slopping or spilling. They have a range of different mouthpieces and it may take a little while to find the one that works best. Of course, a chat to an occupational therapist will open up a whole range of specially designed cups and drinking systems that can overcome many of the problems that Parkinson’s Disease presents to drinking well.
Fluids can also be thickened with products to make them different consistencies – syrup, custard or pudding. This could help many people who find drinking very hard. Eating jelly and watery fruits and vegetables such as melon and cucumber also contribute to fluid intake in an easier form.
The other big worry for carers was poor appetite and weight loss. So tips on food fortification and ways to make a small amount of food more nutritious were very welcome. Ideas for little snacks and nourishing drinks were also snapped up.
It was important to me that I spoke to the carers about themselves a little too and not just focus on the issues of their loved one, Parkinson’s Disease affects them too and can make them less able to eat well. However, their ability to care depends on their health. That I had given information for them to resulted in thanks (and one lovely gentleman who looks after his 90 year old father even gave me a hug!) So while it was a session that I was paid for, the warm fuzzy feeling of speaking to such a lovely group and getting lots of heartfelt thank yous was special.