Journey for MS--off to Poland, **UPDATE** post #22

[crazee4mickey]

My younger brother and I are off to Katowice, Poland in a couple of weeks for him to see Dr. Simka and hopefully receive the breaking MS CCSVI treatment that has been all over the news the last short while.

When the news first broke about the blockage of the veins causing MS symptoms back in November of 2009 he immediately emailed the hospital in Poland. He had all but given up hope from hearing from them when he received an email last Thursday saying they could get him in July or August. My Dsis-in-law can't go with him due to their two very small children(new babe born a couple of months ago) and everyone else in my family is not well enough to travel. So at the time I jokingly said that I'd go since no one else could....never thinking he'd get in this quickly...I thought that by the time they could set up an appointment my Dsis-in-law could go because the kids would be older! He received word on Monday that the appointment is in 3 weeks!

I'm nervous as its not only a huge medical journey but he said that he could have anyone go with him but he wants a close family member to be there just in case anything happens to him I also have never been away from my 4 kids(ages 12-24...and yes to those who say 24 isn't a kid, he's still my kid and always will be) or family this long.

I have no idea what we should be expecting upon arrival in Poland...I am getting conflicting reports--don't ever carry a purse..... its totally safe to carry a purse.....don't ride the train...the train is the only way to travel....does anyone have any advice to pass on that may be of use, safety issues, must see places, etc?

I would appreciate any info on Poland...we know that Euromedic is outstanding in their care of patients so this doesn't worry us at all....its just the general getting around that has us a little concerned!

 

[kimblebee]

My sister and her boyfriend are travelling through Europe right now and one of their stops was in Poland. From the pictures I have seen it is a beautiful country. They have had no problems with crime or violence anywhere so I would say as long as you are aware of your surroundings you should be fine.

On a side note, I am crossing my fingers for your brother. I have MS and hoping that one day the treatment will be available in Canada. I haven't checked my lottery ticket from last night but when I do, and if it is a winner I will be starting my search to go overseas to have the procedure done. I hope you can keep us updated on how your trip goes and how his surgery goes.

 

[Heidict]

I don't know anything about Poland, but I just wanted to say good luck to your DB. My sister suffered from MS for 10 years before passing away this last September and I know how it can take it's toll.

Like Kimberlee said, please keep us updated.

 

[crazee4mickey]

My sister and her boyfriend are travelling through Europe right now and one of their stops was in Poland. From the pictures I have seen it is a beautiful country. They have had no problems with crime or violence anywhere so I would say as long as you are aware of your surroundings you should be fine.

On a side note, I am crossing my fingers for your brother. I have MS and hoping that one day the treatment will be available in Canada. I haven't checked my lottery ticket from last night but when I do, and if it is a winner I will be starting my search to go overseas to have the procedure done. I hope you can keep us updated on how your trip goes and how his surgery goes.

Thank you both for your kind words!

I am excited for him but scared at the same time.

I found a great blog today by a woman in Calgary Alberta and she had a CBC camera crew follow her through her experience in Katowice http://iamsickofms.blogspot.com/ --I haven't watched the show yet but apparently it is very good, her blog was enlightening about what to expect at the hospital.

Ijust hear so many different opinions of Poland and I am sure if we use common sense we will be fine but I always like to hear from those who have been there!

 

[crazee4mickey]

Kimblebee, I sent you a PM

 

[bumbershoot]

I wish your brother all the best!!!!!

My uncle has had MS since he was in his young 20s, and he's now 60ish. His progression has been really slow, so I don't think he's ever really sought out anything out of the ordinary.

But if he had ever needed to do it, I hope he would have been able to, and hope that one of his siblings (there are 7 total) would have gone with him like you are doing.

 

[quasar4legs]

Try tripadvisor for travel information on Poland, I have always found those forums very helpful.

How wonderful of you to be there to support your brother and I hope that the treatment will be successful.
I have a cousin with MS (10 yrs) doing well on Tysabri but our family has been following this surgery option with interest as there have been some very positive results reported.

Safe travels.

 

[kimblebee]

Try tripadvisor for travel information on Poland, I have always found those forums very helpful.

How wonderful of you to be there to support your brother and I hope that the treatment will be successful.
I have a cousin with MS (10 yrs) doing well on Tysabri but our family has been following this surgery option with interest as there have been some very positive results reported.

Safe travels.

What has been his results with Tysabri? I am thinking of switching my meds to this one but am still not convinced. What is the dosage schedule? Are there any side effects?

 

[cats mom]

There are some very detailed reports from folks who have traveled to Poland to have the liberation treatment on the forums at thisisms.com. Have you checked out that site?

It sounds strange to say; but I hope your brother has venous flow issues. Even more importantly, I hope they are able to correct said issues, and that doing so helps his MS.

It's great that you're willing to step so far out of your comfort zone to be with your brother when he needs you.

Good Luck to both of you.

BTW, I too hope you'll update this thread to let us know how things went.

 

[bumbershoot]

Oh gosh, totally forgot to mention. ricksteves.com (he's the travel guy on PBS) has lots of info and tips for European travel. I'm sure he covers Poland, and even if he doesn't, people who visit his site most likely do. He likes to focus on realistic safety, so if he has a poland section, I bet he'll have good info for you.

Another site is lonelyplanet, they have forums (used to be called the "thorntree" but that might have changed). I haven't found them to be superduper helpful, but it's always possible someone has asked a question that will help you.

 

[Disneyadore]

My sister and her boyfriend are travelling through Europe right now and one of their stops was in Poland. From the pictures I have seen it is a beautiful country. They have had no problems with crime or violence anywhere so I would say as long as you are aware of your surroundings you should be fine.

On a side note, I am crossing my fingers for your brother. I have MS and hoping that one day the treatment will be available in Canada. I haven't checked my lottery ticket from last night but when I do, and if it is a winner I will be starting my search to go overseas to have the procedure done. I hope you can keep us updated on how your trip goes and how his surgery goes.

There is a clinic in Düsseldorf ,Germany that does the same operations.

http://www.ccsvi-online.com/

We had a special program on tv this week about this specific subject.
They interviewed people that had the operation and they had all a very good outcome from the surgery.Many of them could walk again. A young lady that was totally immobilized and had to use a WC and scooter just could walk again,had found a job and was so happy .

With a big smile on her face she showed us her E-scooter in the garage but confessed she still uses it for her dog. He was old ,had severe arthritis and she just drove him to the pet play ground. . That brought tears into my eyes.
Te cost of the operation was 8000 Euro.

Just for the record I don't work there.
Wishing you all the lottery luck in the world.

 

[crazee4mickey]

Try tripadvisor for travel information on Poland, I have always found those forums very helpful.

How wonderful of you to be there to support your brother and I hope that the treatment will be successful.
I have a cousin with MS (10 yrs) doing well on Tysabri but our family has been following this surgery option with interest as there have been some very positive results reported.

Safe travels.

How long has your cousin been on tysabri?
My brother has been on tysabri for just a bit over 2yrs and has had 0 relapses...its been a miracle, he actually can enjoy life and has gone back to work. It has even shrunk the lesions on his brain which is wonderful but sadly there is a risk after the 2 year mark so it is in question whether or not he will be able to stay on it after the 3 year mark and unfortunately it is extremely expensive.

I thank you all for your words of support.....

 

[quasar4legs]

Kimblebee sent you a PM re the tysabri

Quasar

 

[crazee4mickey]

I'm getting a little concerned that no one on the Dis has any personal traveller inside info on Poland?

 

[laurie31]

I don't have personal experience, but DD13's best friend went there for two weeks in May (last month) and had a ball. She also went to Austria and Germany and said Krakow was her favorite of all the places they went.

They rode the trains and buses and didn't have any issues. Her Dad had been to Poland twice before, so I don't think he would have taken his DD13 there if he had any doubts as to it being safe enough for her.

I hope you have a good trip and things go well for your brother.

 

[quasar4legs]

How long has your cousin been on tysabri?
My brother has been on tysabri for just a bit over 2yrs and has had 0 relapses...its been a miracle, he actually can enjoy life and has gone back to work. It has even shrunk the lesions on his brain which is wonderful but sadly there is a risk after the 2 year mark so it is in question whether or not he will be able to stay on it after the 3 year mark and unfortunately it is extremely expensive.

I thank you all for your words of support.....

Sorry for the late reply, just noticed your question.

My cousin has been on the Tysabri 2 years and has had no attacks since being on the medication. We know a number of people that are taking tysabri and all have improved on the drug.
I'm in australia and there is talk of an oral tysabri type of medication that will be available here at the end of 2011 so many are hoping to swap onto that as it does not have the risk of PML (as I understand it).
My cousins quality of life has improved dramatically on the Tysabri and I am pleased to hear that your brother is also doing well.

Hugs to you and your brother
Quasar

 

[crazee4mickey]

cats mom--we have been on the thisisms.com and had not thought of asking for travel info fromthose who may have already been

bumbershoot--glad to hear Rick Steves info is good...I had ordered a book of his from Amazon just before your posting and had no idea who he was!

laurie31--thanks, it makes sense that the country is safe (if using common sense which sometimes I think tourists forget at home ) if someone will take their young daughter there to visit. Just watched a video on Kracow and it looks gorgeous

Thanks to all for your well wishes I will keep you updated on how it all goes!

 

[eowensby]

I has been 10 years since I was in Poland. We were there for 3 weeks for mission work to teach English. We were in Sopot, near the top of Poland. My husband and I did travel to Krakow by train for a few days on our own. We spoke only a handful of Polish words. If you can find a younger, college age person, they usually speak English...if you need help. The trains were fine and seem to be the major way of travel. One of our students actually booked our train tickets for us from Sopot to Krakow. He booked us with first class tickets so we could have more privacy and be a little more comfortable on the train. It wasn't expensive either. Just use good judgement. My husband carried a travel pouch thing, not a fanny pack , that his belt went through on his waist. It was worn on the front of his pants. Someone else in our group wore their money and passport around their neck under their clothes. We were warned of pick pocketers, but never had an issue. We absolutely loved Krakow.
I wish you and your brother the best for this trip. Please keep us updated.

 

[crazee4mickey]

3 more sleeps until we are off!

 

[Tosie]

I have been following this research too - DH has MS - please update us when you get back! Prayers and pixie dust for your journey and for the procedure!