Fog

Posted on November 6, 2014November 6, 2014 by Amanda Horner

I once described suffering from high levels like walking around in a fog. Everything dim and pale. Sounds muffled, sights clouded. A fog that swirls around the outer edges of your minds eye. Slowing down time, coating life with a dense haze. Movements slowed, your body sluggish struggling to keep up. Watching the world pass you buy. That your standing there as it moves over your body, spreads across your face like walking through spider webs. Weightless yet suffocating. Standing in the cloud as it twists and turns around you, hiding you from sight. Looking out and no one looking in. A beam of light slithers forward, blinding and bright , a ray catches through the thinnest veil, reflecting through the air, trying so hard to reach you. You hold out your hand desperately trying to cling to the light, to pull yourself closer, to pull it in, to brighten up the darkness. Each Struggle in vain. It washed through your hands, slips through your fingers. It disappears and you wait for the next beam to cross. Or to wait for someone to find save you, to flip the switch and bring back the sun. Cole did that for me once.

He was my light. How many times can one person save you? before you realize you have to save yourself?

When their shoulders and their strength is no longer enough to carry you. When you learn that they should not carry you. They are there to support you. TO help you, for you to lean on. Not to fall on.

Though my levels sit around 9 , I find the fog has been settling in again. Its different this time. I don’t feel as lost, I don’t feel alone. I have hope deep down inside. I feel him standing on the other side of the veil calling out to me. Reaching his hand out through the fog, Why don’t I reach out and take his hand? It is fuzzy…It makes me feel so tired, my reactions and my actions sluggish. My body protesting any movement , its so heavy. I am so tired. Can’t I just lie down here?

The world does not wait, life does not pause. I need to speed up. I need to jump back on the merry go round. Shake off these cobwebs, breathe in deep, and stand tall. All the tools are around me, to pull myself up. To get myself out, I see them there, around me at my feet. My brain knows the steps, I know what I need to do , yet I cant seem to make myself , cant seem to push hard enough? I catch a glimpse of a mirror , but who is that looking back at me?

Her smile doesn’t reach all the way, her eyes don’t shine, her shoulders slump , her skin is pale, hair is flat. Where is that bounce in her step?

————————————–

My levels are not that high, I am lost in my depression and I am growing increasingly worried about my mind. Memories slipping through the cracks. My mom use to describe my mind like a sieve. Maybe she was actually right? I feel my long term memory fading. Information missing, holes widening. I try to remember, I try to focus. What was that drug information? what is the definition? what are the side effects? what tests do I need for this diagnosis? What is this procedure? How do I do this again? What is a normal Bp? What are normal creatine levels? What is the drip rate for this normal saline?

Why cant I remember? I graduated college 4 years ago, There is so much I cant remember. I cant retain the information. I cant recall that answer? What are the steps I need to do for this?

How do you long divide? what are my 9 times tables? Where is this country on a map? What is the capital city? How did world war 1 start? What are the provinces in order? Why dont I know this? Why can’t I remember? what is wrong with me? What have I done? Did I do this? Did my non compliance to my diet as a teenager really effect me more then I ever could have known?

When I was 13 , My levels were so high, I was admitted to BC Children’s Hospital to be withdrawn from high levels. To be educated on the diet , to monitor and treat my side effects. They did so many tests. The one that has always stuck with me was the MRI. My mother came over by ferry to be with me, she sat on my bed when the doctor came in. He held the results in his hand, they sat there talking. Mom was crying. The doctor was talking about White matter. I didn’t understand.

what have I done?

Is this permanent?

I cant recall facts, I don’t remember what I learnt in school . Grade school and some of my college. I feel like it there. I just cant reach it. It is so frustrating!!

Cole and I will be sitting on the couch watching some program on TV, usually history, or discovery, something will come on , I know I should know it . I have to ask him. he explains. And asks why don’t you know that? didnt you learn it in school. What can I say? Probably? Yes? I dont remember? I didn’t pay attention? I was so sick I could not focus?

Little does he know how stupid I feel. How hard it is for me to ask , something so simple I should know. How mad I am at myself. That I blame myself, that It frightens me.

My biggest fear is as I grow old , it will worsen. That I am susceptible to alzheimer’s and dementia. That one day I will forget his face , That I wont know who he is, who my family is, who my friends are, and worse.. who I am?

I am 28 years old, and these are my thoughts, these are my deepest fears. My secret of secrets. My biggest self confidence. My lowest self esteem. My own mind scares me.

How can I hold off this fog? How can I help the light shine through? Can I prolong its creeping fingers?

Who can help? what questions can I ask? I want to be better, I want to get better. I want to be me , I want to be healthy and happy and enjoy life again!

I want to change! where do I start?

Levels, Managing the diet

Annual Blood work 2014

Posted on October 28, 2014October 28, 2014 by Amanda Horner

Yesterday I had my annual blood work done. I hate getting this done due to the fasting. I fasted for about 14 hours. Fasting makes me so sick!! I always wake up very hungry right away, and the longer I dont eat the sicker I feel. Buy the time I drive to the lab and wait in line I feel like I am going to faint or throw up. I have never looked forward to these tests for that reason. The actual tests don’t bother me at all, I watch to and sometimes coach the girls. The girl I had this year had not seen so many tests . I told her not to worry and to breathe and joked around with her about how use to this i am. I have it down pat. I ask right away that they use a butterfly, that I get something to grip, only use the one arm, don’t worry about the scar tissue, or hurting me. no tape, band aids only.

My guess this year was for 6 vials, it was 7 with a urine test to test kidney infection. These annual blood work are important for your clinic to see how your low protein diet and formula are effecting your body. if you are getting enough or to little and if any changes need to be made. Last year my cholesterol and triglyceride where high and my ferritin levels had bottom out and where un readable under 5. This year I have already received a few results back. With some improvements!

I thought I would share my results with you so here are the results I have already received.

My total Cholesterol has improved, last year it was 5.09 and now it is 4.06 ( Normal is 2-4.59)

Prealbumin is 268 ( Normal is 170-360)

WBC
5.5
Normal is : 4.0-10

RBC
4.70
Normal is : 3.80-4.80

Hemoglobin
145
Normal is : 120-150

Hematocrit ( out of range)
A 0.45
Normal is : 0.35-0.43

MCV
95
Normal is : 82-98

MCH
30.9
Normal is : 27.5-33.5

MCHC
326
Normal is : 305-365

RDW
12.8
Normal is 11.5-14.5 %

Platelet Count
273
Normal is: 150-400

Differential
Neutrophils
4.0
Normal is : 2.0-7.5

Lymphocytes
1.0
Normal is : 1.0-4.0

Monocytes
0.5
Normal is : 0.1-0.8

Eosinophils
0.1
Normal is : 0.0-0.7

Basophils
0.0
Normal is : 0.0-0.2

Granulocytes Immature
0.0
Normal is : <0.2

Ferritin ( Out of range )
A 12
Normal is : 15-180

Adults: <15: diagnostic of Iron Deficiency

15-50: Probable Iron Deficiency

51-100: Possible Iron Deficiency

>100: Iron Deficiency unlikely

persistently >1000: Test for Iron overload
Sodium
141
Normal is 134-145

Potassium
4.7
Normal is : 3.5-5.0

Chloride
105
Normal is 98-106

Bicarbonate
26
normal is : 20-29

Urea
4.1
normal is : 2.5-7.0

Creatinine
65
normal is : 50-100

Estimated GFR
94
Normal is : >=60

Calcium
2.31
Normal is : 2.10-2.55
Cholesterol ( out of range)
A 4.60
normal is : 2.00-4.59

LDL Cholesterol
2.30
Normal is : 1.50-2.99

HDL Cholesterol
1.47
Normal is : >1.10

Chol/HDL (Risk Ratio)
3.13
Normal is : <4.4

Non HDL Cholesterol
3.13

Non HDL-cholesterol is calculated from
total cholesterol and HDL-C and is not
affected by the fasting status of the
patient. The optimal non HDL-cholesterol
level for intermediate and high risk
individuals is <= 2.60 mmol/L.

Triglycerides ( back in range, improved since last year )
1.82
Normal is : 0.45-2.29

Urine Calcium
0.2
mmol/L

Urine Calcium/Creatinine
0.07
Normal is : 0.01-0.39
Urine Creatinine
2.7

Urine Protein
0.02
normal is : <0.15

Urine Protein/Creatinine Ratio
7
Normal is : 0.0-25.0

ACR (Microalbumin/Creatinine Ratio)
<1.0
Normal is <2.8

TSH
2.0
Normal is : 0.27-4.2

Prealbumin

268

170-360

All in all I am happy to see that my TSH is normal. That my Ferritin has improved, that my cholesterol and triglyceride are better. I am not surprised that my sodium is border line, I eat alot of salt. I will have to work on that.

I am expecting more results soon. Including my Amino Acids and Blood PHE.

Low pro food / cooking

A Baker’s Paradise

Posted on October 15, 2014 by Amanda Horner

I have a bakers love affair with products from Taste Connections.

I first tried the products at a BC PKU day in Vancouver . I attended a cooking session with Malathy herself!

I was instantly impressed by the products as they are the first products I have used that have ingredients I can pronounce. They are easy to work with, they don’t take a lot of time or adding extra ingredients The dough is so soft. IT is very easy to work with and reminds me of ” real dough” meaning that it does not harden and become stiff while working with it, or like the sugary cambrooke mixes, to soft and burn.

The products I got to sample where tortillas, English buns, and bread. All where so soft they melted in your mouth. What is better , they where “airy” they raised and had air pockets ( bubbles) they also tasted like the real thing. Even though I should not know what the real thing tastes like, I did use to cheat as a teenager and though I bake alot . nothing I have ever made has compared to the real thing!

After the conference I began to hound special products to bring in the baking mixes for BC residents! and guess what ? they did! but only the all purpose mix currently.

My disappointment came after what I could not access the website. While looking for recipes to trial with my new baking mixes I kept being blocked from viewing the website. My anti virus kept blocking the site with a big flashing warning. Luckily I have been able to email back and forth with Malathy. Who was very generous to email me some recipes that I was looking for!

However today I am excited to announce that Taste connections has a new look and a new website!! That I can access! I am so impressed with the simple recipes that I cannot wait to get started!

I am thinking of trying the perogi and some cookies tonight!!!

I will be sure to be share photos after,

However in the mean time, please show your support and check out Malathys new taste connection website at the following lunch and happy baking!!

http://tasteconnections.com/

BC Residents and news, Low pro food / cooking

Special Products Distribution centre update.

Posted on October 1, 2014 by Amanda Horner

just had mini heart attack from a misunderstanding. I had hear the BC Children’s hospital Special products distribution center was closing down, then I read on the website that the retail side of SPDC is closing and panicked. So to clarify after speaking with the staff at SPDC, they are not closing down! They are shifting focus to the metabolic foods . They will not be selling retail items like breast pumps, feeding bags, syringes and what not, they are continuing with the BC metabolic food fund. Currently they have a lot of back order specially from cambrooke that has not come in yet. They have no estimation of time on when they will be in and the current October order form is not available online as the whole website and systems are being updated right now. The website will be a metabolic food website. Please check back in a few days if you are wishing to place your October orders!

ahh panic over and hopefully crisis prevented for anyone else whom may of been confused!

Now once again having just looked at the current page that is up through the BC childrens website, SPDC list 2 list for low protein food, one stating covered foods such as low protein staples (baking mixes, bread/cereal products, sauces, protein food replacements ) and then a list for

Non-staple Low Protein Foods may be purchased. This greatly concerns me as I am worried all the “GOOD” food will fall under this category, like the cambrooke foods, such as the eggz, tortillas, or the maddys muffins and cakes. or any of the pre made cambrooke foods we have been asking for them to bring in . Looks like I have some more investigating to do , to bring you all the answers. Hopefully the new website that will be up in a few days will provide some clarity as all links are currently broken and I cannot investigate further that way.

I know cambrooke has been trying to work with the BC government to have their foods subsidized and delivered to our doors, but I have heard no update on their progress , I choose to remain hopeful.

You will know, as soon as I know.

Amanda

CanPKU

Facing my fears

Posted on September 29, 2014September 29, 2014 by Amanda Horner

This weekend was a weekend where I faced some very big personal challenges and looked one of my fears head on.

Perhaps I should start from the beginning. Most of my adult life I have lived with severe chronic depression, anxiety and panic disorder. I do not blame my PKU for this, I think it has an impact, but it is not the source. This effects me because I have my comfort zones, and my comfort radius and I do not leave that. If I do , I need Cole with me. I will not go out alone after dinner unless he is with me. I will not travel with out him. I will not spend the night any where over night with out him. I am dependant on him, he is my comfort. My security. I feel stronger and more confident with him around. He knows me, he knows what my triggers are and how to work me through them. I rely on him to give me strength to do things.

I wont drive very far on my own, I am totally fine driving to and from work and around kamloops on my own and during the day, but once is Cole home in the evenings, I want to be home to.

Cole drives me to my clinic appts, I cannot drive that far on my own. I refuse so drive the Coquihalla Highway myself or anywhere in or near Vancouver. If I could perhaps I would go back to Victoria more.

Over the years I have passed up many travel opportunities, trips, and girls night out, or sleep overs with friends. I don’t go out to bars or have a night life. I have lived with the regret and being left out , friends don’t even ask me any-more. For the most part I have told myself I am ok with it. Because I just cannot face my fear. I would NOT face my fear.

I have been slowly pushing myself over the years , I feel like I have come along way, though I still have along way to go.

This weekend I really really really pushed myself! and I survived!!

I flew to Toronto!!!!!!!!!!!

LIKE OMG!!

I went away for a whole weekend, WITHOUT COLE!

I flew from kamloops on west jet Friday morning to Calgary, met up with Nicole Pallone vp of CanPKU and then flew 4 more hours to Toronto for CanPKU meeting and strategic planning session!

We stayed at the Sheraton hotel and had meetings every day. Friday we went for dinner and then we had the Annual general meeting , followed by a board meeting. I am now a Director for CanPKU! Seeing the inside workings and leaning so much about CanPKU was amazing! We even had a low protein candy bar for the meeting,

Saturday morning was a buffet style breakfast, I had low protein bagels, fruit and cereal! we had our Strategic planning session, with lots of brain storming and making plans for the future of CanPKU. Which p.s, I am so excited to be a part of!! Lunch was amazing, I had a low protein potato salad, celery root braised potatoes, and cream of vegetable soup!

Nicole always puts so much effort into making these events PKU friendly and the variety of food always makes me so excited. It is not heavy on the medical foods, but its real food cooked in ways I would never think of and it gives me ideas, and inspires my passion! I really appreciate all her hard work in making myself and the other PKU adults feel normal and it takes a huge stress off my shoulders not having to worry about what I am going to eat , when I am going to eat and what I need to bring with me! I can relax and enjoy myself and know that it will all be OK.

All of us went out for dinner together to Jacks bar and grill and it was so much fun. We shared some laughs , some drinks, and experiences / memories! It was a great social experience and I cannot remember a time when I have gone out with friends with out Cole, stayed out late and been able to not be anxious and stressed out. I enjoyed myself! I felt like an adult and I had fun! I talked and socialized with everyone. I bonded and got to know the faces to the familiar names and voices that I have been on conference calls with over the years, worked with over email and who live all over Canada!

Sunday morning , we had a hot low protein breakfast and I finally got to try cambrooke eggs ( note : I still prefar the Pku prespectives eggs) with potatoes and a camburger pattie.

Not only did I fly on 4 planes this weekend, I went out to dinner and enjoyed myself with great pku community friends but I also slept alone in my own hotel room! with a king size bed lol. I made myself a “nest” in all the big puffy pillows and fell right alseep. Though the changing time zones did effect me and I didnt get much sleep. I was to tired to be nervous or scared. I talked to cole once a day on the phone and texted with my mom all weekend.

We left the hotel sunday morning at 1130 Toronto time, for our flight at 1 pm. Nicole, Jen and I had a snack type lunch at the airport. Jen flew back to Vancouver and Nicole and I flew to Calagary.. I had a 5 hour lay over and had to hang out at the airport by myself and my phone was dead. I had dinner by myself and did some shopping!

I got home at 9 pm local kamloops time. Cole and Copper picked me up and Copper was soooo so excited that he sat on my lap with his paws around my neck licking my face the whole way home and then fell asleep in my arms. It almost made me cry. My baby puppy!!!! Holding him in my arms and holding coles hand on the way home in the truck and just quiet. Went straight to bed and was great to be home! and sleep in my own bed.

Flying was such a new experience for me. For years I had been to scared thinking what if the plane crashes? what if I die? i am not ready to die, I have so much life left to live, I have to many things I want to do and my biggest regrets would not ever being a wife and mother. I was scared to be on my own, to be alone, to have to depend on myself to stay calm and responsible. All week I thought about the Alanis morrasset song where she talks about the “man who was afraid to fly, he waited his whole damn life , to take that flight, when the plane crashed down he thought isn’t it ironic? ” because it truly would be ironic. People talk about how safe flying is and how nothing rarely happens, but then it just so happens to happen with me?

Flying the way there was beautiful and breathe taking, specially over the Rockies and beautiful BC. But the weight of my situation did not hit me then as I was still really nervous and not use to the turbulences and bumps. On the way home from Toronto it hit me. what I had done, what I had accomplished and just how far I had travelled. I could not get over how much of the country I was seeing. I was a little sad, as I sat glued to the window watching life go on under the clouds ( I WAS ABOVE THE CLOUDS!!) that I could not recall my elementary/ high school education specially my geology and could not appreciate where I was , what I was seeing and where each province started and ended, or even what order they are in. I felt so sad and stupid. I regretted cheating on my diet, lying about what I ate and the damage that i did to my brain. I have come so far and accomplished , but I still have these effects that linger, specially with my memory and recall. It is something that burdens me and weighs on me, it also weighs on my soul and my guilt. I hope now it will drive me and give me back the motivation that I need to pick myself back up and get back on track with my health and PKU!

Over all, what a great weekend and I am so proud and happy to be apart of such a great team at CanPKU and I am eagerly looking forward to what the future holds and just how far CanPKU and PKU will go!

in closing, here are some photos from the weekend!! i hope you enjoy them as much as I enjoyed taking them!!

That's my PKU life

Update on me

Posted on September 24, 2014September 24, 2014 by Amanda Horner

It has been a while since I have posted. So much has been happening and summer has gone by so very fast. Yesterday was the first full day of fall. Already!

I have had a very busy summer, even though a lot of it did not feel like summer activities. We got our new pure-bread chocolate Labrador puppy Copper in June, the day after my birthday. July we travelled to Revelstoke to Arrow lake for camping to celebrate our 9 year anniversary. It was our first camping trip with Copper. August took us to Victoria for my sisters wedding. We spent a week visiting with friends and family. August I also started a new job with interior health. I am excited and nervous all at the same time. I have been working in private facilities since I began my career 4 years ago. Also In August kamloops hosted a meet and greet with Shawn Johnson and Graham Wardle from the tV show heartland. Shawn Plays Grandpa Jack and Grahamn is Ty. I had my photo taken with them and got their signatures. I also met a new friend waiting in line! I took part in the ice bucket challange for ALS and we went spent the last week of August in clinton with family.

Our Garden did not end up doing well this year, either from not watering it regularly, i didnt have time to weed it as often as I wanted , and then copper was using it as his toilet despite my vocal protests! But our fruit trees did great!!! We got some wonderful juicy and large peaches and many many many pears. We are all the peaches fresh or i added them to baking and food. The pears I mixed with apples and made apple/pear sauce. I did get some good carrots, and peppers this year too.

September has been even busier. Almost all month I have been battling a chest infection and was on antibiotics but they didn’t seem to do much. I have also been finishing off my orientation for my new job. it has been sporadic to get it in and finished with our really busy schedule.

Started off the month attempting to shave Figaro. He needed it badly, he was so matted and so hot and filled with dander. It took me 8 hours though since I had the wrong shaver.

We puppy sat chris and Rae-Anne ‘s puppy steve, who is also coppers brother . We watched him over night and him and copper play so much! it was like having twins!

had a lovely visit with Claudia and Katie, We harvested the pears, went walking along the beach, had dinner and then the next day we went to breakfast and the farmers market. It was the longest I had left copper at home and We where gone about 4 hours.

I was finally able to do some low protein baking and canning. Harvesting what I could from our garden. I started to make my first few steps to regaining control of my levels and my pku diet. It has taken some hard knocks this summer and I have suffered from it. I have had high levels most of the summer, not being eating a lot of low protein and eating out a lot. No baking, no tracking, no blood tests nothing. I have been having side effects and greatly suffering from depression. When I think back I think i began to fall off track in March. Since then it has been a downward spiral with my compliance and effort. I have been battling with my depression and anxiety again with very high-tended side effects. My medications where increased and I have accepted and chosen to go to group therapy to work out some of my problems . September was the month I chose was finally going to be my turning month and I was going to try to get back on track. It has not been as easy as it has in the past for me, and its been baby steps all month long. Focusing on habits, working on portion sizes, attempting to write everything down to see patterns and habits, and trying to increase my low protein foods again, as well as fruit and veggies. Trying to kick my bad rice and sushi habits.

We travelled back to Victoria again for another wedding. This time instead of being in the bridal party, I was the wedding photographer . I had my PKU Clinic visit on the way home from Victoria.

Last weekend I travelled to Vancouver with my one of my best friends Daphne to the Blake Shelton concert. It was great!!! Opening acts where Dan and Shay, Neal McCoy and The band Perry. Then the big man himself whom I like to call god’s gift to country girls! Daphne bussed down from Edmonton on the Friday night. I picked her up Saturday morning at 7 am from the bus depot. Then we left kamloops at about 11 am, drove to Vancouver got there about 2, went for dinner at 5 , concert started at 7, over at 11, walked back to her brothers and left Vancouver at 12 am and got to kamloops at 4 am. I went to bed just before 5 am! So Sunday was a rest day!

Monday Tuesday I did my evening orientation shifts and tonight I do my night orientation . Tomorrow will be a rest day and then I have a major challenge I am facing that will put my anxiety to the test. I am flying out Friday morning at 6 am to Calgary and then meeting up with Nicole and flying to Toronto for the CanPKU annual general meeting and advocacy training. I will be gone 2 nights 3 days ( and 4 plane rides) Back late Sunday night. That will give me 2 days before October starts and wow has it gone by fast. I am really nervous. I have never flown before or travelled alone with out cole! If cole was coming I think I would be way more excited!! Right now I am worried and going through many “what if ” scenarios!

My goals for October include more frequent blood tests. I find doing them weekly keeps me accountable . One of my bad habits is I will not do a blood test if I feel like my blood tests are high. I will tend to make an effort to drop them a bit before I do one. Right now I feel like I could be around 11 or 12. All the levels I did in August and for September have come back between 7 and 8.

My next goals are to bake more, focus more on eating different meals and mixing it up a bit. not eating the same thing everyday because it is so easy. I also need to cut back on mashed potatoes and rice. I have no problem with my formula but I tend to drink it only 2 times a day. So I want to try spreading it out a bit more through out the day. I also want to start making my own soups for fall and winter. I have some zucchini to use up and want to make some bread. I am also hoping to increase my activity levels more, starting out small and not overwhelming myself. possibly walking Copper more regularly and maybe swimming too. My goal range for levels is 6 and under. So we shall see how it goes.

That is what is new with me. I apologize for my lack of posting and activity on social media as of late. I am looking forward to things quieting down and getting back into a regular schedule again!

Avery's Ride for PKU

Avery’s Ride for PKU Summery

Posted on September 18, 2014October 28, 2014 by Amanda Horner

** taken from the latest edition of CanPKU news/ written by Nicole Pallone**

AVERY’S RIDE FOR PKU

When planning for Avery’s Ride for PKU began almost a year ago, a team was assembled and goals were set.

The initial team was comprised of Kevin Dube, John Adams, Nicole Pallone, Tanya Chute and Jenn Pino. Many, many (many) others joined us along the way. A project of this magnitude does not come together without a lot of planning and we spent hours on the phone planning routes, discussing logistics, making decisions – and setting goals.

We had three primary goals for Avery’s Ride for PKU:

1) To improve the sense of community among the PKU patients and families of Canada;

2) To increase the awareness and advocate for the needs of the PKU community; and

3) To raise funds so that CanPKU can continue working towards the goals of the organization.

Kevin didn’t just dedicate his entire summer for Avery’s Ride for PKU. He spent hours every week for the eight months prior to the ride planning, preparing and training. He had the support of his wife and family: a wife who was willing to stay home along all summer with their two young children, and who was still supportive of the adventure when she found out she was pregnant in January; a dad who was not only willing to donate his van for the duration of the ride, but who also drove Kevin out from Ontario to Victoria to start the journey, and who drove the support vehicle for the first two weeks of the Ride.

Kevin, we know you set out at the beginning of this Ride to honour your Grandfather, who passed away at the beginning of June while you were en route to the starting point. His work ethic and kindness was obviously an inspiration to you – we are all sure, without a doubt, that you did him proud with what you accomplished this year.

So, in honour of the whole Dube clan, this newsletter is a Special Edition that is focused on Avery’s Ride for PKU. Please read the articles below, each highlighting one of the goals. And to each of you who were a part of this magnificent project, big or small – thank you.

Goal 1: A Greater Sense of Community

When Kevin Dube and the team started their ride across Canada, inspired by his own young niece Avery Dent, I am sure he can only have imagined how physically and emotionally challenging this ride would be for him, and the people he might meet across the way.

Back in 2013, when the whole concept of the ride was just being formulated, could any of us have known how successful, inspiring and touching it would be?

We cover Kevin Dube and his travel teams’ journey across the country with excerpts taken from his blog site:http://www.rideforpku.ca/english/blog/?start=26

When anyone plans a big physical challenge, asides from the financial and planning aspects of it, surely you would ask the question, am I really up for this? Can I really do it? When Kevin first started planning the trek, and questioned if he was really going to be able to do it, what kept him going?

Kevin stated in his November 26, 2013 blog, “When I start to doubt if something like biking across the country is even possible, Avery’s smiling face is a real reminder of why we are doing this.” He of course wondered how his wife and two small children would fare in his absence, and on May 24th he blogs: “I really want them to know that sometimes its not all about doing things for yourself and its important to make sacrifices for those you love, especially your family.”

The Official Announcement for Avery’s Ride for PKU was made on January 31st, 2014 and covered in a number of media links: “PKU uncle will cycle across Canada in 71 days this summer to raise awareness and $25,000.” (from PRN Newswire). Below is the CanPKU brochure advertising the event.

In reality, Kevin had already begun his training and planning many months before. By March 24th, with better weather approaching, Kevin was able to move his training outside. On May 25th, with one week left before the ride starts, things started hitting home. “I’m realizing the hardest thing about all of this is not going to be climbing mountains or biking crazy distances every day for two and a half months, but its going to be leaving my family for the whole summer,” and on June 1st, when he had already left for the ride start point he says it “was extremely tough leaving the family at home. Its going to be a tough few weeks before returning to see them.”

Kevin, Svend & Ken - Mile 0

Finally, day 1, June 7th, and mile 0 begin with hope and optimism. Kevin was joined by Svend Paulsen, an avid cyclist who has a distant cousin with PKU, who also dedicated his whole summer to Avery’s Ride, and a local resident and cyclist named Ken, who is also a cousin of CanPKU President John Adams – already, the Ride was bringing PKU community members together. “Its going to be long and difficult but its also going to be a great experience. I hope we can raise lots of awareness and funds for PKU. I really hope that somehow this will make a difference for Avery as she grows up and for the PKU community as a whole,” blogs Kevin afterwards. Mile Zero was accented with a generous donation from strangers who had never heard of PKU but were moved by the cause – awareness was already being raised.

In Vancouver a small get together joined more PKU community members, including a PKU adult from the UK who was in the city visiting family. In Hope, a waitress donated some of her tip money in support of the ride. On June 9th Kevin started a very physically challenging section of his ride – Merritt and the Coquihalla mountains. “Today was the day I was nervous about from the startof planning. It was the day I would have my first real climb in the mountains. Not just the first of this ride, but ever.”

Days 4 and 5 were spent in Kamloops staying with PKU adult Amanda Cosburn. Of that stay Kevin says, “We had some food, did a bike/walk around the island and had some great conversation with the people there. There is quite a big PKU community in Kamloops and it’s great that they can all get together and share stories and help support each other.”

In Salmon Arm, more PKU connections were made when PKU grandparents put the Avery’s Ride team up in a hotel, took them to dinner and also spoke with media. In Cranbrook, CanPKU VP Nicole Pallone’s mom put the boys up for the night and provided meals, and Nicole took over hosting when Aver’s Ride hit her hometown of Sparwood, BC.

Alberta also saw the PKU community come together: accommodations and meals were provided by two different families in Claresholm; Accommodations in Calgary were arranged by Calgary PKU Mom and CanPKU Sponsorship Chair Sandra Harland; Edmonton saw an event hosted by the Lenkenhoff family and PKU relative Theresa Garskey arranged for several free hotel stays. As Kevin wrote about Vegreville, “The manager here even asked for a stack of postcards that other guests could take and learn about PKU and the ride. This is really helpful is spreading awareness regarding PKU,”

In Saskatchewan, Saskatoon residents Heather Garton and Jodi Hoover made arrangements for this leg of the journey, where Kevin spoke at a school gathering. By June 25th, Kevin and the team were pushing on to Regina, with strong winds making the progress slow. “The wind really messes with your head. In my opinion the physical challenge of riding in the wind is not even close to the mental challenge it poses,” blogged Kevin. In Regina, Kevin and the team attended a BBQ hosted by Lyle and Linda Stewart, “It was really encouraging to have the Minister of Health from the Saskatchewan Government attend the BBQ and hear about the ride for PKU,” he said. At this event, “I was stunned to learn that at the end of the night over 2600.00 was collected for the ride,” which “officially put us over the 25,000.00 mark eclipsing my goal for the entire ride before we had even made our way through Saskatchewan.”

By June 28th Avery’s ride had reached Manitoba. More unfortunate weather followed, with fog and rain causing concern for Kevin, “We woke up today to Fog, and lots of it. I was a little nervous starting out on the road in that much fog but with my flashing light Svend assured me I was visible…. and then the rain started, and it poured!” FInally, by July 2nd, some decent weather arrives and a few days later Kevin reaches beautiful Falcon Lake, Manitoba. He was excited with this milestone, he blogs, because “next day was the day I’ve been looking forward to for a while, the day we enter my home province.”

On July 9th, “The ride today to Terrace Bay was absolutely beautiful, and one of the best days we have had so far,” and then the group was on to Marathon, where friends had set up a “meet and greet at the mall today and we were able to pass on some info about PKU to many of the people who were out shopping.” After this, right into Blind River to stay with hosts Muriel and Wayne Orton after the “total ride yesterday was supposed to be 76 km but turned into 219 km, the longest ride I have ever done and it felt good to get a 200 km day in.”

On July 21st Kevin arrived at his home to spend a few much needed days with his family after 46 days away. ” I had a great day with the kids and my parents. Sarah came upFriday night and it was nice to be together as a family for the first time in more than a few weeks.” And on staying a few extra days, “It will be great to be here for a few extra days since we have modified the route slightly. It will be great to see lots of family and friends.” There was also a big fund raising event in Kitchener, where Avery herself was in attendance, which raised close to $4000 for the Ride. Other fundraisers in Peterborough and Ottawa also took place, contributing to all three of our goals.

Later in the ride, in Oshawa on July 28th, Kevin and the team were able to stay at Svends’ place and learned “that John Adams had arranged for us to meet Helen Dionne, who after having two children with PKU was a driving force behind getting new born screening to be made mandatory in Ontario. It really was pretty special to meet Helen.”

While in Ottawa Kevin was able to tour the Newborn Screening Lab, which was interesting for him “see the machine that 11 months ago would have determined that Avery was positive for PKU and it was great to meet the people working in the lab, they are all passionate about what they do and it is so important.” After this, Avery’s ride moved into Quebec – arriving in La Chute on July 31st.

Arriving in Quebec City on August 5th, sometimes its the small things that become important – Kevin was happy to accomplish two desired goals on a much needed ride day off, “1. Laundry and 2. Eat Poutine! – successfully did both before noon!” and then spent the rest of the day walking around the city where he blogs, “The history in that place is unbelievable!”

On August 7th the ride continued and crossed yet another provincial border into New Brunswick and the East coast “the last leg of the journey and I’m looking forward to riding in the eastern provinces. We rode about 160km into Edmundston NB. It was a great ride, with great weather.” In New Brunswick, the Avery’s ride team met up with PKU Dad David Brennan, and were able to enjoy a large Acadian Festival going on at the time.

In Moncton on August 10th, the group attended an event at the local clinic that had been organized by Stewart and Marise Landry, and the next day were on the way to Charlottown, PEI where they attended an event hosted at the Culinary institute of Canada, organized by Natasha and Colin Moore, where the students were preparing low protein food options. Kevin says, “everyone who attended (the event) received a name of someone who had PKU and their challenge was to eat a meal based on the phe tolerance level of that person. It was an interesting way to educate the average person who may not know much about PKU, and it really put the diet in perspective.”

In Halifax, Kevin, John Adams and local PKU patient Diane Little met with the Minister of Health, to discuss PKU and patient needs. Kevin is hopeful that this meeting will encourage the government to “review Nova Scotia’s current coverage and hopefully make some changes that will further assist those in NS with PKU.”

Avery’s Ride for PKU ended on August 17th in St Johns, with local families welcoming them at a couple different events. “Finishing the ride was really cool but it was also a little odd to finally reach a goal we had been working towards for over 2 months and not have to get up the next day and figure out a bike route and get ready to get back on the bike,” Kevin blogged on the day. “I tried to reflect a lot on the last day of riding. Part of me could not believe it was here, it seemed surreal.”

What was most enjoyable about the cross Canada ride for Kevin? “Being able to meet people who have PKU and meet parents, aunts, uncles, grandparents, siblings and friends of those who have PKU was the absolute best part of this trip for me. ”

One of the goals of Avery’s Ride for PKU was to promote a sense of community for Canadians living with PKU. There is no doubt, as evidenced by the vast number of people who volunteered and planned events through the big and small towns the ride went through that this was accomplished. Please forgive us for not mentioning each and every person that contributed to this amazing journey! The Ride allowed people to connect and support one another and help us feel that we are not alone – Goal One was accomplished.

Goal 2: Awareness and Advocacy

Another goal of Avery’s Ride for PKU was to raise awareness and advocacy, and we want to illustrate how this Ride created a vast amount of media and news coverage.

From Victoria, BC to St Johns’, NL, many incredible stories of both Kevin’s journey and those across the country touched by PKU have been shared in these articles.

Press Release – January 31, 2014

TELEVISION

Breakfast Television Vancouver (City TV): June 9, 2014

Breakfast Television Calgary (City TV): June 18, 2014

CKWS Television Kingston: July 28, 29, 30, 2014

CTV Ottawa: July 30, 2014

CHEX Peterborough: August 1, 2014

CBC Prince Edward Island: August 6, 2014
RADIO:

CBC Radio St. John’s: segment aired on Monday, August 18

VOCM Newfoundland: segment aired on Monday, August 18
PRINT

Blue Mountains Courier-Herald – May 14, 2014

Elk Valley Herald – June 4, 2014 (page 4)

Stony Plains Reporter/Spruce Grove Examiner – June 6, 2014

Salmon Arm Observer – June 19, 2014

Peterborough Examiner – June 30, 2014

Claresholm Local Press– July 2, 2014

Waterloo Region Record – July 5, 2014

Cambridge Times – July 16, 2014

Peterborough This Week – July 17, 2014

Kitchener Post – July 24, 2014

Metro Ottawa – July 31, 2014

Chronicle Herald (Halifax, NS) – August 5, 2014

Waterloo Chronicle – August 6, 2014

The Guardian (PEI) – August 6, 2014

The Bugle-Observer (New Brunswick) – August 12, 2014

The Telegram (St. John’s) – August 18, 2014

Southern Gazette – August 18, 2014

If you have an article to share that we may have missed, please contact us to let us know!

Goal Three: Fundraising for CanPKU

The third goal of Avery’s Ride for PKU was to raise funds for Canadian PKU and Allied Disorders Inc., the only Canadian PKU organization dedicated to providing support to patients and families living with PKU and other allied disorders. This goal was met with resounding success and the final total far exceeded our initial goal.

In the many months of planning that occurred prior to the ride, we discussed what this goal should be. Too high and we would be disappointed if the goal was not met. Too low and we might surpass it early on and have the donations stop. Finally we settled on $25,000 as a realistic, attainable goal that we would still be very happy to meet.

By Day 1 of the ride, we had already raised several hundred dollars through the online donation option – special thanks to the Canadian Organization of Rare Disorders (CORD) for facilitating that program and allowing people to receive tax receipts for donations over $10.

And on Day 1 of the ride, at Mile 0 in Victoria, we chatted with complete strangers about PKU. We educated them a little about the disorder and they surprised us with a very generous $40 donation. Throughout the ride, it was this that impressed us most: the willingness of complete strangers, people who had never heard of PKU before, to open their hearts and wallets and help us reach our goals. Anonymous friends who left an envelope with cash under the windshield of the van and strangers who bought t-shirts in support of the Ride were as important to us as the companies that donated hundreds of dollars.

On Day 19, less than 3 weeks into the 10 week adventure, we hit our first goal of $25,000. It was an incredible feeling for Kevin, Svend and all of us who had worked behind the scenes to plan and prepare for the Ride. At that point we had a good estimate of what the expenses for the ride would be and we decided to set a second goal of $40,000, which would cover the expected $15,000 of expenses and still leave us $25,000 to support the goals of CanPKU. With so much of the Ride still left to complete, we felt fairly certain that this goal would be reached: and it was, before we hit the end of July!

When all was said and done, the generosity of Canadians (and a few Americans!) totaled a whopping

$64,693.67!

Although some expenses still need to be accounted for, this leaves us with approximately $50,000 for CanPKU to continue supporting, educating and advocating on behalf of PKU patients and families.

Due to the outstanding success of this project, we are also looking at how we can offer financial support of PKU research for the very first time in the history of this organization.

Avery’s Ride for PKU was more successful than we expected and we have you to thank for it.

Whether you donated $10, bought a t-shirt, organized an event, hosted the team overnight, bought them a meal, donated a silent auction item, attended an event or simply cheered Kevin along across the country, you helped make Avery’s Ride for PKU a success and from the bottom of our hearts:

THANK YOU.

And to Kevin Dube, the man with the mission, from everyone at Canadian PKU and Allied Disorders Inc. and everyone who benefits from the CanPKU organization:

THANK YOU.

Managing the diet, News

Repost of the 2014 new PKU treatment guidlines

Posted on September 11, 2014 by Amanda Horner

I am posting this again as there have been frequent questions asked regarding treatments and PHE levels. I think it is very important for everyone to be aware of these changes. I am hearing about more and more clinics implementing these new guidelines. I am hoping that one day all countries will set these guidelines as the standards for PKU treatment. It makes me very uncomfortable that each place , province , and country has many differences in expectable levels and treatment guidelines. I really think it should be the same globally. Change is slow but these new guidelines are the best I have seen. I believe they where announced February 2014. I do have another post in my archives the day the news was announced.

2014 New PKU Treatment Guidelines

****The ACMG and GMDI recently released new guidelines to the medical community for the optimal treatment of PKU.****

Below is a list of the key recommendations on the new guidelines:

The guidelines refer to PKU as phenylalanine hydroxylase deficiency.

* The treatment of PKU should be initiated as early as possible. Treatment is lifelong with a goal of maintaining blood phe levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages.

* There is no convincing evidence that levels about 360 umol/l and above are without clinical effect.

* Blood phe levels should be monitored at least weekly until age 1; biweekly to monthly in ages 1-12; and monthly in adolescents and adults who are stable and well controlled.

*Routine biochemical assessments (phe, tyrosine, plasma amino acids, prealbumin, total protein, complete blood count, ferritin, and vitamin D 25-OH should be monitored at regular intervals based on age.

*Plasma amino acids (full panel) should be considered when a formal nutritional assessment suggests it is needed.

*Patients treated within the early weeks of life with initial good metabolic control, but who lose that control in later childhood or as an adult, may experience both reversible and irreversible neuropsychiatric consequences.

* PAH genotyping (i.e. mutation analysis) is recommended for improved therapy planning.

* Medical foods (formula and foods modified to be low in protein) are medically necessary for people living with PKU and should be regarded as medications.

* Medical foods should be consumed throughout the day and divided into at least three servings because more frequent consumption is associated with better phe tolerance and improved plasma phe concentrations.

* Any combination of therapies (medical foods, sapropterin, large amino acids, etc) that improve a patient’s blood phe levels is appropriate and should be individualized.

* Large amino acids may be used in adults who are not in good metabolic control and do not adhere to other treatment options.

* Experience with sapropterin under the age of 4 is limited.

* Response to sapropterin is not accurately predicted by a person’s gene mutations and thus response should be documented by formal testing.

*Reduction of blood phe, increase in phe tolerance or improvement in clinical symptoms of PKU are all valid indications to continue a particular therapy.

*Genetic counseling should be provided as an ongoing process for individuals with PKU and their families.

* Due to an increased risk for neurocognitive and psychological issues, regular mental health monitoring is warranted. A number of screening tests are recommended to identify those in need of further assessment.

* Blood phe should be monitored at a consistent time during the day, preferably 2-3 hours after eating.

* Tyrosine levels should also be maintained in the normal range.

* Clinic visits should occur weekly- monthly for infants; every 6 months for children 1-7 years; every 6-12 months for 8 years old and up; and monthly to per trimester for maternal PKU.

Maternal PKU recommendations:
– Maternal phe levels should be maintained at 120-360 umol/l before conception and throughout pregnancy.
– Large neutral amino acids should not be used during pregnancy
– Women taking sapropterin who become pregnant should be offered the option of remaining on the medication
– Women who may benefit from the lowering of blood phe levels with sapropterin should be offered it as an option during pregnancy
– There are no contraindications to breastfeeding postpartum as infants not affected by PKU are able to metabolize the slightly higher phe levels in their mother’s breast milk

Treatment of PKU will eventually be individualized with multiple medications and medical foods available to tailor therapy. The primary goal of therapy should be to lower blood phe, and any interventions, including medications, or combination of therapies that help to achieve that goal in an individual, without other negative consequences, should be considered appropriate therapy.

For more information please see :
https://www.acmg.net/docs/Phenylalanine_Hydrosylase_Deficiency_Practice_Guideline_AOP_Jan_2013.pd

Managing the diet, That's my PKU life

Kelli Floyd

Posted on August 7, 2014August 7, 2014 by Amanda Horner

As many of you have heard already, a dear friend of the PKU community . a PKU adult and advocate Kelli floyd passed away on the weekend. Kelli and I first met over 9 years ago on the internet forum http://www.pkuboard.info I met her as Kelli Wrenn. I never had the pleasure of meeting Kelli in person but we have had many conversations on-line. Kelli was a inspiration. She had such a positive outlook and advocated for adults to try to mange their diets. To try harder and to take one day at a time. To try to drink their formula and she did her best to be supportive. To share her experiences so others could learn from them. I am sad to say we lost touch over the years and I did not make the effort to keep our relationship strong. Life got in the way and our paths took different twists and turns. I sit here now wishing I kept in better contact. knew how she was doing and what she was going through. Spent more time getting to know her. I did see her comments and posts around fb, I did read them when I saw them and commented when I could.

Her death came as a shock to me. I was un prepared and it effected me more than I would have guess. It effected us all in some way. I learnt that she had gone into cardiac arrest after struggling for a while with health problems and seizures. She was lifeless for 20 mins . They where able to revive her, than she started again to have multiple violent seizures. Her husband never left her side. The test after the seizures did not provide hope and we leant Kelli was brain dead and was on life support. These where not kelli’s wishes. Her husband and family disconnected the life support. The doctors said she would live for 30 mins. She fought and held on for 18 hours before God took her home.

I have kept kelli in my thoughts and in my prayers. Along with her husband and family. Kelli touched the lives of so many people and since her death there has been an out pouring of support, prayers and messages from all those kelli touched.

There has also been much self reflection in the community. Specially for the adults. Kelli’s story and death have hit deeply for all those who still struggle with PKU or even for those who do not have access to treatments. Many of us know of Kelli’s struggles to acess food and formula and that she had gone some time with out regular formula intake. We know she had high levels but was working to stay on track.

There is much fear in the community this week regarding the link between pku and seizures , as well as if PKU contributed to kelli’s death. thus I felt it was necessary to clear a few things up. Kelli would not want us to be acting this way.

We do not know if PKU was the cause or contributed to the cause of kelli’s death. We do know that seizures are a side effect in some who suffer from uncontrolled, unstable or unmanaged pku and high phe levels. Not everyone who has PKU will suffer these side effects . I am not saying that it was not the cause. It is a proven fact that people with PKU who have high phe levels are at a higher risk to have seizures. Though we cannot be sure that was what happened with Kelli. I Instead of causing fear and alarm and spreading panic , kelli would want us to focus on learning from this experience.

Even if Kelli’s death was or was not pku related, and even if her seizures where cause or not caused by PKU take a look at your own health. If you are concerned about your levels, if you suffer from high levels, if you are not on diet , if you wish to go back on diet, then please seek medical advice and treatment. It is not easy to just “go back on diet” i know that just as much as of all you. But together we can support each other to do our best and try to make better choices and decisions to better our chances. Take from this and learn from this. Let it motivate us to take care of our health and fight for access to treatments so something like this does not happen again to anyone.

I also must be clear once again, not all illnesses, health concernes and life problems are caused by PKU. There are always more variables, more causes and more risks. You can have PKU and other health issues non related, even seizures.

However there is always the risk,, and if you know you suffer already from side effects, if the damage has already been done, please let this push you to educate yourself, have a conversation with your doctor and your PKU clinic. Try new formulas and gain acess to low protein foods.

We should not speculating at a time like this on what is and what is not related. What the cause was, what the reasoning was and or causing panic. It is good to be aware and to educate yourself, share your story so others can learn. but please refrain from making medical suggestions and sharing opinions with out more fact. It can cause alot of fear in newly diagnosed families, children , family and friends in the community as well as in our selves . I do not mean to discourage anyone from sharing their thoughts and feelings. We all are here for support , to learn from one another and to educate each other. We have all been taught or told different things over the years. The research is always growing and developing and changing . The pku community has come so far over the years and I am so happy and grateful for that . We still have a long way to go so do keep that in mind.

I feel very passionately that being on diet for life, and taking advantage of low protein foods and treatments when we have access is the best possible way to keep our body and our brain healthy.

It frustrates me when I hear people off diet talk about how they do not feel the effects, or when someone does not understand PKU and how serious it is and can be. It is not just about diet or what we eat. It is so very much more than that . At the same time, we are very lucky that PKU is manageable and can be treated with food and formula. If we actually use them!

I know for myself I truly feel my best when my levels are low. under 6 and I feel amazing. Higher than 8 and I become so sensitive and out of touch with my body. I can tell the differance now that I am healthy, how much it effected me to be some what off diet. Though I always drank my formula. I cheated and lied about what I ate. I suffered and I paid the price and still have it weigh on me. I know how hard it is, how dark it looks from the bottom. How hopeless and difficult it is to pull yourself up. I promise you for those who are currently off diet and dont think it is effecting you, you will notice when you get your levels lower and it will amaze you!!!

it truly is like that say, like a fog has been lifted, or a light switch flipped. It becomes so much clearer and it becomes easier . The motivation stemming from just simply feeling good. I wish I could show you all what it is like. You wont believe it till you feel it.

I encourage you all, who struggle or are off diet, reach out, seek help, seek support, educate yourself and take the first steps to improving your quality of life and lessing your risk for side effects such as seizures . Do it for your family, your children, your siblings, your parents, your spouse, your friends, your co workers, your team, the public. Do it for Kelli but first and foremost, do it for your self. It will change you. You can trust me when I say it is worth it. You are worth it. Do not give up. All you need to do is ask for help!

Even if you are not struggling, if you are managing, and think you are doing ok, try a little more, push a little harder, challenge yourself , reach higher and expect more from your self. We can all benefit from focusing more on our health. And not just PKU health, anyone;s health . Any ones journey. For weightless, for fitness, for diabetes, for your brain , for your heart , for your lungs, for your body, for cancer, for diseases, for sickness and for health. Push yourself and keep on working on you!

That is what i am going to do . Thank you Kelli for showing me its time to pick myself up and try again. I will miss you. I will think of you and I will do my best to keep your hopes dreams for us all to continue to grow. I will pray for peace and strength for your family and your loves ones. RIP .

Social Media

a note to the online community:

Posted on August 7, 2014August 7, 2014 by Amanda Horner

I spent half an hour writing out a post for this group, but then my computer crashed and I lost the post. I will try again though i really hate repeating myself as well I hope i will capture much of what I wanted to say.

As this group expands, we cross international boarders and welcome many diverse people into our community, we tend to forget about each other on a individual basis. We all have our own thoughts, feelings and opinions. thus my reasoning behind this post.

I feel that I need to ask that we all be a bit more considerate of things we post and comment on. A lot of postings in this group are very emotional and become quit passionate.

I mention this because tonight I feel very emotional and hurt over off hand comments made towards pku adults vs being on diet.

It makes me so sad and frustrated. It hurts so much to hear people talk and say things like ” well just follow your diet” ” just go back on diet” ” its just food” and other such remarks. I am one to always say, things we face are not always PKU related, that far to often pku adults blame life problems on their PKU. But however on the flip side of the coin, it is not always easy. It is not as simple as drinking our formula or only eating low protein.

There are so many more sides to having PKU other than diet. There is a whole side that includes psychosocial, physiological , mental , emotional and physical aspects. Specially in adults who have been taken off diet, struggled with diet , have been inconsistent, or have not had access to treatments and low protein foods. It is not as easy as non pku people thing.

I use to tell myself all the time, that once I had low protein food coverage that it would be so easy , that i would never fall off track again , that i would keep my levels in range always. But now I sit her tonight confessing to you that is not the case. I still struggle. I still have side effects. I still have trouble keeping motivated and working hard on tracking and managing my intake, Cooking or baking, meal prepping and finding the time to cook or bake from scratch. Avoiding temptations like grabbing something quick.

I have ups and downs , i fall off track. I get discouraged and I struggle with depression and anxiety. I find myself so jealous and envious of the attention children with PKU get , knowing they will have an easier time. I am very happy for them and grateful for how far pku treatment has come and how our community has grown. Thought I find it difficult as an adult when I see companies, non profits, media and government focus on the children. It makes me feel like why not me? why not the others like me? don’t I deserve support? don’t I deserve help too?

I am 28 years old and I strive to be the support and voice for the adults and an advocate for anyone who has PKU touch their lives. I am the most involved adult I know. I find so many adults have been discouraged from joining forums like this. They cannot relate to many others and they feel disconnected. Judged even. They feel unsupported and that no one can relate to them. So I ask once again please be considerate when commenting. We do not walk in each other shoes, though we walk a similar paths. Please be respectful to others feelings and things you do not understand. PKU effects everyone differently, patients, family and friends. It is dynamic as we are. All of our journey’s are take different paths. We are hear to support each other, and to learn from each other.

I apologize for such a long post, thank you for understanding and thank you to those who read this post.

I am PKU Strong