Moving with PKU: Get moving.

Welcome to the second of Soheb's blog posts. Soheb also has PKU and is an active member of the online community. He has combined his IT skills and PKU knowledge in several ways to help himself and others manage their PKU.

These include the PKU calculator to help manage exchanges and supplements through out the day, and the associated PKU Talk forums. Soheb has been known to whip up neat software programmes on the whims of the PKU community to make it easier to follow NSPKU’s supermarket food messages.

In his first blog for PigPen.Page, Soheb discussed the benefits and potential pitfalls facing a PKU-er moving out of home for the first time. Here in part two, he looks at practicalities of moving and how to prepare:

Get your Exchanges (or Phe allowances) sorted

It sounds really obvious, but if you are where I was before I moved out, I really had no clue about exchanges and measuring protein levels etc. If you can, really try to get to grips with counting exchanges and gauging if you are meeting or exceeding your exchanges and your supplements every day. This is important because our body makes phenylalanine by itself if it hasn’t got enough, and it will do so by breaking our bodies down.

At that time, in 2015, I didn’t really have a good idea on my exchanges. Due to the way I was managing my diet (low/free protein on the weekdays, bingeing on high protein on the weekends), the dieticians assumed I was on 20 exchanges. After a bit of a reset and recalculating exchanges, I’ve found out I’m actually on 6-7 exchanges.

If you are unsure about your exchanges and don’t really know where to start, try speaking to your dietitian about your exchanges. They are there to guide you on the right track. Bear in mind that it is in their best interest to see you managing the diet well, so the both of you have a vested interest in getting your diet back on track. If, for some reason, you feel like you can’t speak to your dietitian, try speaking to a charity that specialises in Phenylketonuria. The one in the UK is called the NSPKU and they are absolutely wonderful, helpful, and judgement-free.

How to get your Exchanges sorted

Either way, try your best to get to grips with exchanges and measuring out your food, etc. If you don’t measure out your food, once you’ve worked out your exchanges (if you haven’t already or you aren’t confident that it is correct), start by introducing some food with phe in your diet that you feel like you can easily measure. Cereal is a great starter for this and can really help you get in the routine of measuring your exchanges and slowly taking control of your diet.

I’m not asking for total control of your diet, all I’m saying is have some control on your diet.

And don’t worry if you don’t. I didn’t really have control, at the time and my phenylalanine levels in my blood test when I lived out were some of the lowest phe results I had in my entire life, just due to being extra cautious. It just helps to prepare as much as possible before you move out as it can make your PKU, and your life, a lot easier to manage. One way or another, you’ll get to the point of having things under control.

What you need in a new home

So, you are looking around for a new place, what should you look for? For me, I would say the following is a must:

• Adequately sized kitchen
• Plenty of storage space for prescription food
• Adequate fridge/freezer space

When I moved out, to save on the cost of rent, I moved into a shared house, so the above was really important to me. I think if you rented out a flat or a house on your own or with family, you wouldn’t have to worry about the above so much as you don’t have to worry about anyone else taking up space.

If you do decide to go with a shared house or flat like I did, be warned that some housemates, new and old, can just gobble fridge, freezer, and storage space. Normally just having a kind word about asking for a bit more space should do the trick. My experience has been as it is a shared house, nobody really wants to start drama, everyone wants to get along, so people will be happy unless it seems you’re making other people’s lives more difficult.

Think about your options in new places

Something to think about and consider when having any shared space is do you want a bigger room to keep your food & supplements in, or do you want to take advantage of the available shared space? Luckily while I lived in a shared accommodation, nobody dared to drink my supplements (it only happened once, behind my back, and the person deeply regretted it after getting a load of the bitter acidic taste). My food was also safe, especially when I explained PKU to them. In fact, a lot of people were incredibly sympathetic to my plight, even though there was little that could be done by them.

My room was a 6x6 box, lovingly called “my cupboard with a bed”. The single bed fitted from end-to-end, it was that small. The kitchen was somewhat long, but not very wide. Two people would struggle to get past each other. There was lots of fridge/freezer space. But the oven didn’t work. It would short circuit the bottom of the house when someone used the oven and turned on the TV downstairs.

Option: The GP and Pharmacy

So, you’ve found a great place to move into and are seriously going for this place. Excellent! The first thing to do when you get there is to note down the nearest GP and pharmacy. If you are planning to essentially live there long term, then I suggest you register to your closest GP and try to find the best pharmacy around you that caters to your needs. Things to think about include:

• Home delivery options
• Location and parking
• Customer service, will the staff be easy to contact and communicate with.

My original plan was to stay in my shared flat for no longer than 2 years. Since I wasn’t planning on sticking around for too long, I decided to stick with the GP at my parents’ house. However, I ended up in that flat for three years. Eventually, my the GP near my parents house found that I was living somewhere else and advised me to sign up with the GP near my flat. This was because I was using services further from my home and affecting their ability to support more local patients.

That meant I had to move to a new GP. Which meant asking my dietitian to call them and explain my condition and how I have to go to London to see a specialist because my condition is just that rare and that I was a bit unique. I was allowed to get my new GP to send prescriptions to the pharmacy at my parent’s place. This may seem incredibly long winded and stupid, especially as I’m going to take the food and supplements back to my place, but I was already spending every weekend at my parents and there wasn’t much storage in “my cupboard with a bed”.

It worked well for a while, but when I moved back to my parents changing back to the old GP was a pain. Several months were spent ensuring pharmacies got prescriptions from the correct GP. If I had to do it all over again, I would probably try to register to the new GP as soon as possible, as that was a hassle I’d rather get over and done with as quickly as possible.

Option: PKU Prescription food has changed

Food choices for people with PKU used to be incredibly scarce but now we have an ever-growing amount of options to choose from, and it doesn’t seem to be slowing down. We have more options on prescription and companies to chose from than ever before so you can be as fussy as you like.

Help is readily available, more than ever before.

And if you have any prescription problems, you can always (as a last resort) go to the manufacturer’s website and order food directly from them. This will cost you money as opposed to getting food on prescription, so be wary of that if you are trying to manage your finances.

Before doing that though, don’t forget to get your dietitian or your local PKU charity (NSPKU in the UK) involved. There is no reason why you should have to fight the battle alone. A lot of the time if the pharmacist gets extra heat from specialists, you best believe they will take the issue seriously. Just check that you have paid for the prescription or that your prepayment certificate is up to date.

Even dieticians are more accessible which means you can quickly fire off a random question to your local group and get an answer within a matter of minutes, rather than days or even weeks like back in ye olden days of yore.

Option: Vegan food in supermarkets

One of the things I used to freak out over before I moved out is where I would go and get food. Now I know people would say “the supermarket, duh!” But with PKU that’s an... uh... very restrictive place. Of course, I had to go there to get the basics and whatnot, but it didn’t really have much in terms of low protein food back in 2015. Back then, veganism was a quirky thing that only a small amount of people would bother with.

Nowadays in 2020, veganism is all the rage and supermarkets are all about options. Seriously, how much variety in cheeses do we have??? (Polly’s note: There will never be enough cheese!)

There are plenty of places (both physical and online) that sell more variety of “alternative” food like cheeses that are vegan friendly and super useful for us PKU folks!. Even supermarkets have some vegan options which may not be phe-free, but are low enough that you can use as exchanges. Not only that, but in the UK we have online stores such as Alternative Stores that have a section just for PKU people! That honestly blows my mind to even think about!

Hopefully this blog has given you a few things to think about and options to investigate as you look to move. I’ll finish by echoing what I said in my last post. Mistakes will happen, but …

The greatest teacher, failure is. Yoda

**Main image used with thanks to Michal Balog for sharing their work on Unsplash.