Hi all.
Obviously one of the results of my cidp is loss of strength and muscle in my legs.
Was thinking the other day, anyone have it ever tried physiotherapy?
Any feedback or Thoughts?
Many thanks
Bazza.
Hi and good morning from Denmark,
You asked if any one has tried physio therapy and my answer is a big yes. I’m two years in with GBS exactly from tomorrow and have had physio almost since day one. I go twice a week now to rehab training led by a physiotherapist. I have gone from 95% lame to 90% good. So yes, yes, yes it helps more than you can imagine. Yesterday I drove into town on my el scooter…parked it outside the shops I wanted to visit and was able to browse in the shops unaided just like I did before. It was my energy that was giving out in the end, not my legs.
I was wrong saying that I am as good as before…I am better because I appreciate everything so much more now.
Hey.
What a great reply. Thank you I appreciate that.
Sounds like it’s helped you a huge amount.
I will make some enquires I think…
hi:
you write “Obviously one of the results of my cidp is loss of strength and muscle in my legs.”. this is wrong. there is a rare variant of CIDP, known as the pure sensory CIDP or sensory predominant CIDP (i happen to have it. it occurs in about 5% of CIDP cases) in which there is no loss of muscle strength at all. there are also other variants of CIDP with their own specific set of symptoms, e.g. vestibular loss, resulting in a lack of balance. many neurologists, including CIDP specialists are unaware of these variants and completely miss the diagnosis.
richard
Wow that is wonderful Xstitcher- do you remember some of the specific exercises the physio gave you?
Hi Cannuk
For the first 7 weeks after my hospitalisation I lived in a rehab home because I was completely lame. My first victory was to wiggle my toes and move my legs sideways a couple of inches. At the home we had chair gymnastics which were hell at first because I didn’t seem to be getting any where. This is where will power and positive thinking are your best equipment believe me.
After I was sent home still in a wheel chair but able to use a walker for a few steps I was sent on a 10 week course twice a week where we were using state of the art machines that were geared to develop the wasted muscles and still use our blood, sweat and tears.y I was picked up and delivered back home in a handicap transport, first in my wheel chair, then my walker and on the last day I walked out and climbed onto the bus unaided…tears all around.
I was still dependent on my walker for trips to town and right away began rehab group training with about 8 others twice a week at at physio therapy Center nearby and that’s where I am now. I’m not perfect but you can’t see by my gait that there is anything wrong with me. I get about in a super metallic red mobility scooter.
I just came home from town a couple of hours ago after 3 hours of shopping. I park my scooter at the door of the shop and waltz in like any other dedicated shopper!
Without my training I’d never be this good. I do go for short walks on the days I’m not training . My weakness lies in lack of energy. The saying “shop until you drop” has taken on a whole new meaning.
I wish you all the best Canadian girl. Keep us in the loop eh.
In case you haven’t guessed I’m an ex Canadian. C
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Hi!
I have CIDP and I am also a physical therapist. I can tell you that PT has really helped me. I am still working and I am quite sure that doing PT all day and using my hands has helped me to regain a majority of my strength. I am very aware of my “flare up days/weeks” & have to constantly try to keep my strength. Sometimes I have to focus on one area that is particularly weak. I think it is important to find a therapist that is willing to learn about CIDP. In school we were taught about GBS but not CIDP. But I feel any orthopedic/neuro therapist will understand. I have both sensory and motor issues as well as balance issues etc. I think if you can find someone to work with as well as be given a home program, it can make all the difference. Please ask me any PT related questions. I am happy to help. I know this is a frustrating path, but muscles have memory and I am sure that you are fighting this battle with all that you have got!!
Wow Xstitcher, your story brought tears to my eyes! I can only imagine how it felt walking on to that bus. Thank you so much for sharing your heartwarming story 
Haha shop to you drop… I’m definitely one of those people who finds shopping exhausting to begin with! Thank goodness for the online variety.
Ex Canadian eh? Now I am curious! Where did you grow up, why did you leave? I’ve only ever lived in Canada (but am preparing for a vacation to Hawaii- it will be my first time there and I am so excited!)
Hi LRach that is a generous offer, thank you for sharing your wealth of knowledge! My mother was also a PT and had heard of GBS but not CIDP.
Hi Cannuck
Hi Canuck,
'
First of all let me wish you a wonderful trip to Hawaii. Maybe you’ll bump into that lovely Mr &a Mrs Obama.
Thank you for your kind words about my journey with GBS.
This might sound very strange but it has given me many positives experiences that have been life changing, most of all my appreciation of everyday things I can again do for myself and not be dependent on others.
I too enjoy shopping online. It was my life line when I was so sick and my poor hubby was forever arriving at my rehabilitation home laden with parcels.
I enjoy browsing about the shops and people watching in town…just seeing what colours are being worn, how they are fastening their winter scarves, what colour nail polish is “in” and lipstick of course. I guess you could call it living life.
Now how did I come to Denmark? In a word 
️.
I was born and brought up in London Ont. A few months ago I Googled my London only to be terribly disappointed in the city “improvements” in the downtown area. It made me sad to see the mix max of Victorian architecture and modern, but that’s progress I guess. Hmmmm!
The city I live in here is the same size as London so I’ve always felt completely at home here.
Now, how far have you come with your recovery and how long is it since you were struck down? I guess you are doing very well since travelling is in your plans. Good for you.
It was lovely to hear from you. The
Wow, wouldn’t that be cool?!
In retrospect, hard times do make you appreciate those everyday things. Sort of backwards though, isn’t it haha?
Okay my story: I’m a moderator here and part of the moderator support team for Ben’s Friends. Our team is all volunteers from different backgrounds, and together we manage about 30 patient support websites. One of the @ModSupport members, Seenie, was my neighbor back in Eastern Ontario. She and TJ come from PsA and Facial Pain. She told me all about BF and the work she does here, so I became involved!
I’m now living in Alberta, doing my MSc in Biomedical Engineering and hoping to get into medical school. I’ve done some neat projects with engineering, but really enjoy working with people- hearing their stories, struggles, triumphs, and what makes them “tick” (just not the Lyme kind… haha!). On top of that, BF is pretty rewarding work!
Denmark- wonderful! Was there a particularly “culture shock” to get used to, or was it pretty similar to Canada?
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I had no trouble adjusting to Denmark. It’s very much like Canada.
I love living here. It’s such a tiny country that you really can get to know it very easily. The only problem I had in the beginning was getting my tongue around the language. The Danes themselves say that it’s not a language but a throat disease.
Now don’t forget that physiotherapy and spread the word.
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But Xstitcher, that’s the exact same thing that the Dutch say about theirs!
LOL
Seenie from Moderator Support (one of the ModSupport team consisting of Meli, TJ and me, and a Dutch-speaking Canadian)
LOL LOL LOL touché. The Danes say that if you can speak Danish, English and German then it’s possible to read a bit of Dutch. I don’t have the German.
You’re so right about it also belonging to the throat disease languages. I found out when I was learning Danish that having a humbug-like sweet in my mouth helped with my pronounciation. No kidding! :- ))
Learning Danish is bad for your teeth then! LOL
Hav en god dag!
Physical therapy helped me tremendously with weakness from Miller Fisher variant of GBS. I started out twice weekly for several months before dropping back to once weekly to regain strength in my legs, back and hands. A physical therapist specializing in balance disorders helped me, as well, with balance and vertigo problems. Both of my therapists had treated a GBS patient previously. I think that it helped me recover more quickly.
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Mange tak skal du have! :- ))
Hi Tar, it sounds like you and I have had similar treatments and are firm believers.
When I became mobile again I asked to learn how to get up if I fell down. This was when I was still having physio at home I’m glad to say because although I managed it, it was far from elegant.
Sometimes, well many times actually, a sense of humour is a necessary tool in the recovery phase.
My balance is about 90% but I wonder where GBS and old age meet. I prefer to blame GBS for everything, with the thought that by doing so I make what ever disfunction I’m feeling at the moment, go away. Mind over matter!
Keep up the good work Tar. You most certainly have the right mind set to move mountains.
This all fantastic.
I’ll def be making more enquires.
Really appreciate all this.
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