CBC Prince Edward Island

Claire's journey
A Prince Edward Islander travels to Poland for
multiple sclerosis treatment unavailable in Canada

Another physio appointment

Just got back from another physio appointment and I have two new exercises on my sheet. We did a lot of work on muscle weakness and spasticity in my right foot and toes.

Although I still rely on one of my daughters or my husband for some walking, I feel that I have improved since before I went away and I believe that physio is helping.

Hard to believe that I will soon be back to work, and then it will be interesting to monitor any differences since last spring. I still have my cane in my car but never use it as there is usually someone there to help me if I feel I need it.

Overall I still feel quite positive that things are improving and I am looking forward to continued progress.

Visiting Mom in Bathurst

Annie and I are in Bathurst with Mom. We will all head back to P.E.I. tomorrow. Mom is going to stay with Peggy and we are going on a camping trip.

I have been doing my physio every day and feeling pretty good. Jill and I went to visit with a man here in Bathurst who is interested in getting the treatment done. He had some questions and I tried to answer them as I talked about my experience in Poland.

I try to walk a bit every day to add to my exercises through physio, every little bit seems to help. We are looking forward to our trip back to the Island!

Physio update

I am doing my physio exercises daily and I must say I feel my legs are getting stronger. The exercises that I have been asked to do are exactly what I need at this point. I also try to walk a bit every day. I am thrilled with the little changes that I have noticed so far and I am curious to see if there will be any more improvements.

I have been getting a lot of phone calls and emails from people who are looking for information to help in their own journeys to MS clinics. Everyone is so excited about the announcement from Premier Wall in Saskatchewan and we are all looking forward to the doors being opened in other provinces in Canada.

It would be so much easier for people if they didn’t have to travel out of our country for such a simple treatment. As I tell everyone, I would do it all again in a heartbeat.

Although the improvements might sound small to some, this is huge for people who suffer with symptoms every day and understand the hurdles that are sometimes faced. Keep on thinking positive everyone!

First visit to physio

Just got back from my first appointment with physiotherapy. It feels really good to be doing something proactive to help with my muscle strength. I have exercises to work on and will go back in a little over a week. I actually did not too bad there today. It is nice and cool out and I feel good! Hopefully this nice weather will continue and I will continue to make improvements.

First post-treatment visit with my family doctor

Had an appointment with my family doctor this morning and was happy to learn that the medication prescribed for me in Poland is exactly what I should be taking for now. Got a referral for physiotherapy and will call them tomorrow to set up an appointment to start working on my weakened muscles. Also discussed exercise and will talk to the people at physio about this too. I am anxious to start rebuilding and getting my strength back.

I feel good about my improvements since I went away. Got a nice call from an MS friend today and realize that all of these changes take time and that moving in this direction is a good thing. Looking forward to a visit with a new MS friend from Souris tomorrow. It feels good to share my journey to Poland and to give advice to those who are looking to talk.

Another sunny P.E.I. day...at the beach

Yesterday was another really nice sunny day. Greg, the girls and I spent the afternoon at Stanhope Beach. It was beautiful! I even went into the water and it was not too cold. A nice feeling for my legs as I was able to cool off as I floated and swam a little bit. I am still not where I would like to be for sure but the water was a good start. Today is another hot humid day. We’ll see what this weather brings!

Improvements since my return to P.E.I.

The changes since my return to Poland have been in small steps, but I am going in the right direction so that is the main thing.

So far I have noticed that I can easily lift my right leg and cross it over my left leg without even thinking about it. This is quite a change for me as I used to have to lift my leg to cross it.

Another improvement is that I no longer have muscle spasms in the mornings. I used to be bothered by severe charley horses in my right calf and complete involuntary straightening of my leg each morning. Since my treatment I have not experienced that feeling at all, and I now can sleep with my legs straight or bent, changing my sleep position often. That is huge for me!

I can also put on a pair of pants without having to lay on the bed or to slide my right leg over the opening as it is on the floor.

My walking is still not as smooth as I would like it to be and this seems to be more apparent in the daytime when it is hotter and more humid. I do much better with my walking in the evenings.

Those are the main positive experiences that I have noted since my treatment in Poland. My thoughts are now "think positive" and 'baby steps." Little improvements every day are like gifts for me!

Compass comes to visit

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Home again!

Posted on July 6, 2010, by Claire Bungay

Hi everyone,

Greg and I are home on Canadian soil again! What a nice reception at the airport.  Of course, we saw our beautiful girls and was it ever good to see their happy positive faces! Peggy, Stephen and the whole family were there, as well as Danny, Wanda and Ryan. What a treat!  

And then, the biggest surprise was my mom, my brother Patrick and my nephew Michael from Bathurst. Wow! I don't know if it was adrenaline or what, but did I ever feel good to see everyone.  

Everyone said that they feel that my walking and colour have improved. I was tired after being up since 3 a.m. Poland time, but I felt good.  

Slept in this morning and then had a visit from Mom, Pat and Michael before they had to head back home to Bathurst. Peggy and Tommy came by too.

We all looked at my CD of the treatment, and they were pretty amazed by the pictures of the blood flow after the stent was inserted. It is really cool to see.

Better go. I appreciate everything that everyone did for me and my family, especially when Greg and I were gone.

As I said to Mom, I have amazing friends and family, and I know just how lucky I am. Thanks all.

Last post from Poland!

Posted on July 4, 2010, by Claire Bungay

Well, this will be my last post from Poland. Greg and I leave early tomorrow morning and will not have a chance to write then.

This has been an amazing experience. What I will remember most is all of the great people that we have met; it was incredible!  

Greg went to Auschwitz today, and he said it was quite a trip. We went for a walk and then took a cab to the local mall this afternoon. Did a little shopping and then came back for supper.  

I still get tired and begin to drag my leg if I do too much, so I have to monitor how I am feeling and work up a bit every day.

There have been some improvements, but I am certainly hoping for more as time goes on and I get stronger. We will see.  

Even if this is the extent of the improvement, it has been worth it for sure.  See everyone back in Canada!

Last Day in Poland

Posted on July 4, 2010, by Claire Bungay
 
Hi everyone,

Today is our last full day in Poland. Greg has gone to Auschwitz with a friend. 

I just said goodbye to our friends, Mark and Mary Ann, from Holland. They are such nice people, and it was hard to say goodbye. 

Mary Ann is doing well. She got a stent too and seems to be doing great. Went to the Sky Bar last night and watched the soccer game on the big screen. Great game, so exciting! 

Mark had his laptop with him, and I was able to watch the DVD of my  treatment procedure. Was it ever cool to see, the stenosis and then the blood flowing properly when the stent was put in.  I'll show you when I get home. 

Might make a quick trip to the local mall when Greg gets back.  It will be an early night tonight as we have to leave the hotel around 4:30 am tomorrow!  See you tomorrow!
 

Back from Krakow

Posted on July 3, 2010, by Claire Bungay

Greg and I had a great day in Krakow. It was beautiful and sunny. What a pretty old city!   

Kind of tired out after a busy day though. Came back and rested a bit.

Greg is up in the room watching the soccer game and I will soon join him. The whole gang of us might get together to watch tonight's game at the Sky Bar, top floor.  

A lot of people are leaving tomorrow. Greg might try to go to Auschwitz tomorrow.  It sounds like it is quite a walk, and I don't really like places like that, so I will likely pass.

There is another lady who would like to go, so he will have some company. Didn't get to the Salt Mine, but we have some literature on it and it sounds really cool.  

Better go again for now.

Another sunny day

Posted on July 3, 2010, by Claire Bungay

Greg and I are going to take a little trip to Krakow. Our driver will pick us up in about an hour.  

Just had a visit from the neurologist, kind of a final check before we leave. He was pleased to see and hear that there have been improvements but told us that, as a neurologist, he is skeptical.  

He mentioned, of course, that he did not expect to see real improvements, so he said that he is pleased for me, but skeptical. Whatever!  Same old story I guess.  

The doctor seems to be a nice man who is just doing his job, but the improvements that I feel are real. For example, Greg noticed that I crossed my left leg over my right while we were talking to the doctor, and I had always had to lift it before.

Greg mentioned that to the doctor, and he didn't say a whole lot. I also told him that putting on my pants is so much easier now. I can lift my left leg rather than shuffle my foot over to the pant leg as it is laying on the floor.

Small things, I know, but it makes a difference. Well, we are off to Krakow in a bit.  

Back at the Hotel

Posted on July 2, 2010, by Claire Bungay
 
I am back at the hotel after spending the night in the hospital. 

It was quite a busy day, but I know it was worth it. We arrived at the hospital around 8 a.m. and filled out some forms, then went in for blood work.

After that, Dr. Simka arrived and did a Doppler on each of us. What a nice man!  He took time to talk to each of us and explain what he saw. 

He said there was stenosis on the left side and that they would first try angioplasty, but he thought it would likely require a stent. He said that the right side looked pretty good with just a little stenosis, but they would check it while they were in there.

Turns out, Dr. Simka was right, and my left side required a stent, but my right side had angioplasty only. Another doctor performed the procedure, and they asked me if they could put a stent in the left side.

They said that angioplasty worked on the right side but that the left would require a stent.  I quickly agreed and they inserted a stent.

The whole procedure took about an hour and was relatively painless. Dr. Simka watched and gave input from another room behind a window. It was great! Had a pretty good night, no ear pain, Peggy, not sure if it is connected or not. 

My neck is tender and sore, but I am taking Tylenol for that, and I think it will be fine. 

Greg and I are going to walk to the pharmacy in a few minutes. I have a number of drugs that I must take.  Mine are a little different because of the aspirin allergy. 

Better go for now. I hope all is well. See everyone soon!

Back from the hospital

Posted on July 1, 2010, by Greg Bungay

Hello,

Took Claire to the hospital at 8 a.m. this morning. Just got back to post this at 4:30 pm.

Claire had blood work done and then had a Doppler performed by Dr. Simka. There were two blockages, one on each side of her neck. She went in for the operation at 11:10 a.m. and finished at 12:10 p.m.

The right side of her neck seemed to be repaired with the angioplasty (balloon). He tried to do the same thing with the left, but apparently it kept collapsing so he put in a stent.

Claire came out just great. She has to lie still for at least six hours, so it will be a long night. She has some pain due to the stent, but overall is in great spirits.

There were six others done today with her: three from Canada, and they are all in the same room. We have been meeting so many people. It feels like the "United Nations of MS."

She is due out of the hospital tomorrow morning so I am sure she will want to elaborate more.

Greg

Two down, two to go!

Posted June 30, 2010, by Claire Bungay

Hi,

Just got back from the MRV. It went well and was not too long.

The disc will be delivered to the hotel, and we will get it to take with us tomorrow.  So, we have had two exams, and tomorrow is the big day: first a blood test, then the Doppler, then hopefully the liberation treatment.  

Everyone is hoping for the best for sure!  Hungry now, haven't eaten since breakfast, so I think we will get an early supper and have an early night.

We are all hoping there will be reason to celebrate when we get back from the hospital on Friday morning.  

Thanks for the positive thoughts and comments!

Back from eye exam

Posted on June 30, 2010 by Claire Bungay
 
Hi Everyone,

Just got back from an eye exam and will head to a hospital for an MRV this afternoon.  

We are meeting so many nice people, from Canada, England and Holland. Everyone is here for the same reason, and it is great to talk to others about the "journey."   

The hardest part will be fasting before the MRV this afternoon and then fasting for a longer time tomorrow because of the liberation procedure!  As our driver said, "Have a big supper tonight!"

The weather is really nice here, very hot and sunny. Greg and I went for a walk yesterday, but we didn't go too far: my right leg really tired out quickly and I was pretty draggy. Hopefully, I will be in better shape after tomorrow.

Thanks for all of the good wishes!

Poland!

Posted on June 29, 2010 by Claire Bungay

We are in Poland! Had a great flight, a long wait in Germany, but the flights were great.
Arrived around 5:30, got our luggage and were picked up by a driver who works for Euromedic. He drove us, and a couple from Holland, to our hotel in Katowice.

Mark and Mary Ann (the Dutch couple) are very nice. We cleaned up at the hotel and then met Mark and Mary Ann for a nice supper at a restaurant at the hotel. Mary Ann will have the liberation treatment on Thursday, the same day as I will, so we made a toast before supper and shared good wishes for success!

Also met a Canadian woman from Calgary who is being liberated tomorrow. She was happy to meet another MS patient from Canada!

All in all, this is such a great and hopeful start to our trip. I received a call from Marta (patient co-ordinator) today, and she went over the itinerary for the next two days.

The driver will pick us up tomorrow morning and take us to the clinic for 9 a.m. I will be seen by an ophthalmologist and have an MRV tomorrow. I will also be seen by a neurologist. Thursday, I will have a final Doppler exam (ultrasound of my neck) and then the treatment.

I will spend the night at the clinic and will go back to the hotel on Friday. On Saturday, I will be seen by a neurologist again before I leave Poland.

I'll post more later!

An introduction

My name is Claire Bungay. I am a 47-year-old woman, a wife, and mother of three daughters. I was diagnosed with multiple sclerosis about 13 years ago after the birth of my third child.

I was very fortunate to have few symptoms for the first number of years but have noticed significant decrease in my balance and mobility in the past year or so.

Like many others with this condition I was hopeful and pleased to hear of Dr. Zamboni's research and work in the area of chronic cerebro-spinal venous insufficiency. My journey began by visiting False Creek clinic in Vancouver in February 2010, where I underwent magnetic resonance venography as well as a Doppler ultrasound of my neck. Results showed that there was abnormality, especially on my right side.

I took this to be good news as for the first time there seemed to be something wrong that could be fixed. After my trip to B.C., I began working hard to investigate clinics and to get on lists for treatment. I was really hoping to go to Dr. Simka's clinic Euromedic in Poland and received news that I would be seen early in 2011. I was quite surprised to receive news in early June that my name had moved up the list and I could be seen June 30 and July 1.

Immediately I began to make plans to travel to Poland. With the financial support and good wishes from my family and many good friends I was able to move quickly and to be here under short notice. The interesting part is that many people I have met here have very similar stories to mine.

I hope most of you can follow my blog and hear about the rest of my journey in Poland.