Submitted by Nessabear on Fri, 2007-08-24 18:17

Saturday 25 August 2007I said goodbye at the end of my last blog entry as I had decided to stop the CAP but thanks to encouragement from Sarah (thank you once again) and my husband, I am going to stick with it.My legs are still heavy and the foot drop in both feet is still bad so I am leaning heavily on the wheelie walker for every step, but at least I am still stepping! I can use two walking sticks to walk the short distance from the front door to the car, but the going is very slow and I feel like one of those Star Wars robots with the really long, gangly legs. I am waiting to hear back for appointments with the OT and PT at my local hospital to see if they can help me with other aids (maybe ankle foot orthosis, Canadian crutches and/or wheelchair; we'll see). I've been a bit of a zombie the last few weeks. Annie and Vic came to stay so I had pretty much one whole week in bed, but I am getting a few things done again now so there must be at least some small measure of improvement. Here's hoping it continues.Thursday 30 August 2007I saw a physiotherapist, Helen, yesterday at Shoalhaven Hospital's rehab unit. She gave me a few exercises to help improve and maintain my muscle tone. She has also loaned me a pair of Ankle Foot Orthoses (AFOs) to try out for a week to see if they help with the foot drop. She assessed my walking with the AFOs with a wheelie walker and with a walking stick and was surprised to find that I was actually walking better with the stick. She suggested that I use two walking sticks for specific walking practise, rather than the wheelie walker. The AFOs helped a little, but not as much as she thought they might, which indicated that the foot drop is only partially responsible for my slow, laboured gait; the muscles and inability to lift my leg properly are playing a big part too. I asked about Canadian crutches, but Helen said that people tend to lean forward too much so it's better to use the sticks/walker and use the crutches as a last resort. She also checked on my OT referral, but they are very understaffed so it may be a while until I hear from them. The overall message that I took from the visit was that the most important thing is to keep walking as long as possible, which of course is what I want! I will do the exercises each day and see her again in just over a week.Sunday 9 September 2007Very quick update while I think of some things I want to keep track of. Pins and needles are spreading up both legs to my thighs. My right foot is almost completely "asleep" constantly now. Left leg maybe slightly better. Not really sure. Still extremely slow getting around. Started another course of prednisone today, 80mg (neurologist said I could do this early September and as the legs are still not great decided to go ahead with it).Big weekend. Kaidee's 5th birthday yesterday! We had a party at Bounce 'n' Slide for him with eleven friends. I didn't really have to do anything but sit on my scooter, but was still too tired to go out to Tig's soccer presentation last night. Was sorry I missed it as he got the trophy for best player for the season! Beautiful spring afternoon. Kai had a nice time bouncing on his birthday trampoline, then we went for a walk/scoot to the park with Inge, Michelle and Jackson. House is filled with freesias!! I have to keep thinking about all these positive things as I have some nasty attitude snarling to get out. Monday 10 September 200780mg of prednisone today. Tapers down from here for the next twelve days. Side effect of sleeplessness returned immediately, so barely slept last night and no nap today. Very frustrating and not conducive to emotional wellbeing. Couldn't contain the attitude beast too well today and had a couple of nasty verbal outbursts at poor little Kaidee when he decided to test the boundaries. I apologised very soon afterwards of course and tried to explain things a bit. He is so mature I expect far too much of him I think. I promised to try really hard not to have an angry voice tomorrow and he said he will help me by reminding me to take deep breaths! Little angel.Did most of the exercises the physio gave me after missing them altogether last week. Have decided not to persist with the AFOs as they just magnify the intensity of the pins and needles to an unbearable level. I see her again on Wednesday. Off to bed to read and hope that sleep will arrive eventually.Tuesday 11 September 200760mg prednisone today. Slept a little better last night and period started today which hopefully explains most of the bad attitude yesterday (didn't realise it was so imminent). Will try to sleep while Kai is at preschool today. Also want to do the physio exercises and would like to attempt a yoga session. Need to scoot up to the butcher to get some meat for Scout later too (poor thing looked forlornly at his bowl of biscuits sans fresh meat the last couple of days). Actually, will try to remember to ask Tig to pick it up on his way home from picking up Kai!Wednesday 12 September 200760mg prednisone today. Starting to see some improvement in leg strength and control. Walking slightly better and both legs performing better on my LIK scale, although the pins and needles are still tingling with a vengeance. Tig's work crisis continuing so he only got about an hour and a half sleep last night. I sent him back to bed after his 6am meeting, so I got myself and Kai ready for the big trip to preschool. Had to scoot up to the shop for bread, come home, make his lunch, then get us into the car (me with two walking sticks) and drive to the Beach. The teacher kindly came out to the car to get him for me so I didn't have to inch my way up the path and into the hall. Only 45 minutes late, not bad I thought! ha ha.Drove home, did a 45 min yoga session, did the physio exercises, did 15 min on the Zen massage machine, unstacked the dishwasher, made poached eggs and smoked salmon on muffins (Tig's breakfast, my lunch) then crashed into bed for a few hours. Michelle picked up Kai then we went round there for dinner as it's Graydon's birthday today. Yep, the steroids are doing their thang: no way I could have achieved all that last week! Sleep was a bit disturbed last night and I'm not tired yet but sleeplessness is a small price to pay for a little physical improvement, even if it is only very temporary. I will enjoy it while I can.Tuesday 18 September 2007I'm up to day 10 of the 14 day course of prednisone and feeling great! Just for my future reference, here is the schedule:Days 1 & 2: 80mgDays 3 & 4: 60mgDays 5 & 6: 40mgDays 7 & 8: 30mgDays 9 & 10: 20mgDays 11 & 12: 10mgDays 13 & 14: 5mg On Sunday we went to Kiama for the day so that Kai and Lucas could see each other for their birthdays (Kai now 5, Lucas 3). It was lovely to see Holly too who is now 9 months old and cute as a little doll. Nic and Kaz are well and Mum, Gaz, Jake and Cassie made it too. No sleep, but I feel terrific and could even stay up to visit with Inge for some red wine on Sunday night. Yesterday was good too, though I was a little tired. Michelle took Kai and Harry bowling then he went to Yvonne's for the afternoon, so I had a lovely long sleep, then a spa, then did a few things. I can't believe what a difference the steriods are making, both physically and mentally. Though maybe the mental improvements are a result of feeling better physically. My legs aren't nearly as heavy and the pins and needles aren't so obvious. Yesterday I walked a short distance with two walking sticks much more quickly and easily than I have done for a couple of months. On Friday our English au pair Jenna arrived. She is having a few days in Sydney and will officially start work on Saturday. She is really lovely and I think we will all get on well. The plan is for her to work about 21 hours per week looking after Kai so that I can have sleeps, especially during the school holidays and on weekends and she will also do some cleaning and helping around the house.Depending on how things pan out once I stop the prednisone, I am going to talk to the neuro about the possibility of staying on a low dose permanently. I know it's not ideal, but I'm pretty sure there are other conditions, such as asthma, where it is possible and helpful.Tuesday 25 September 2007Flagyl pulse 13 (started Mon 24 September 2007) Prednisone finished and already the benefits seem to be wearing off (or am I just feeling the results of being able to do more because of the steroids??). I fell over last night and have really bruised the left side of my bottom and hurt my left arm and wrist. I was falling forward so have no idea how I ended up on my back! I was attempting a few steps without the wheelie walker, so won't be doing that again in a hurry. My legs aren't feeling as good as they were a few days ago, but certainly better than they were before the prednisone. I'm able to use two walking sticks to go small distances, such as from the front door to the car, but feel freer and more secure with the wheelie walker.Jenna is working out well. Kai loves her and it's been fantastic to know that on non-preschool days I have a guaranteed three hours of rest time in the afternoons. This is the last week of preschool before two weeks of holiday, so thank goodness she is here!Friday 26 October 2007Flagyl pulse 14 (started Monday 22 October 2007)No major changes. Back sore for the last few days, aches like with the flu. Maybe the flagyl, maybe spending too much time sitting at the computer (have been trying to get some writing done).Thursday 6 December 2007Flagyl pulse 15 (started Monday 19 November) Very slack with the blog. Am so sick of devoting time to MS. Completed Flagyl pulse 15 (Monday 19 November - Friday 23 November 2007). Ran out of Copaxone a couple of weeks ago and don't see neuro until 21 December. Have called his office to post new script but hasn't arrived yet. Have also run out of Azithromycin and almost out of Doxycycline. Feeling sense of relief at letting go a bit.

Vanessa, I can't begin to tell you how happy I am that you are back and are continuing! Many salutes to your husband! I salute Sarah every day! This is (I hope) the hardest thing you will ever have to do - I believe it is for me (my 3rd anniversary on abx is in 11 days) but, as I keep saying, the rewards are incalculable. We all have to go on hope sometimes.

 

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 44 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

well, here's to your husband & Sara Nessa.  I am so happy you are keeping with it, you deserve to get to the other side so keep at it!!!  Sara is definitely inspiration & especially for those with MS as is Rica!

GOOOOO Nessa!

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 250 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metro

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Good for you and good for your husband and Sarah, I know how hard it is to continue doing this in isolation and without the constant encouragment of the medical profession.   There will be light at the end of the tunnel...  You only have to look at Rica to see what tenacity can do for you...

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

 

Aah, my feel good day!  I'm glad your husband feels the same way, Vanessa: a supportive spouse is almost a necessity, I think......................Sarah

An Itinerary in Light and Shadow   Stratton/Wheldon regime since August 2003, for aggressive secondary progressive MS.  Intermittent therapy after one year. 2007 still take this two weeks every three months. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

YES! Just love to hear good news! You won't be sorry; quite the opposite. I think you'll look back and say 'whatever was I thinking'. YAY!!!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thanks all for the encouragement. Onwards and upwards I hope!

Vanessa :o)

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

That was encouraging news you got from your physio.   It is true that if you are able to exercise this will make a difference to your walking ability.   It works for Ella, during pulses her walking deteriorates but she perseveres with her gym routine and floor exercises and it means that when she has recovered from the after effects of the pulse she can see some improvement in her strength and stamina.   I hope it works for you too.

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Thanks Michele. It's good to hear that Ella has experienced benefits from sticking to the exercises. I'll keep this in mind when I can't seem to get any response from my uncooperative toes; they just don't want to lift up off the floor! 

Vanessa :o) 

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Hey, I'd like a house filled with freesias! Maybe my green thumb will recover along with the rest of me and I can coax a few out of the ground next year!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Mackintosh,

I certainly hope you recover, green thumb and all. I can take no credit for the success of the freesias. They are all growing wild near where we live and my son, mother-in-law and friend pick handfuls for me whenever they take our dog for a walk. They lift my spirits as soon as I catch their scent wafting through the house.

Vanessa :o) 

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Oh, Vanessa, I'd call myself recovered right now. I plan to continue another six months, at least, just to 'be sure', but if I stopped today, I'd say I'm at 98% fine, or better.

I love the scent of freesias, yet keep forgetting to add them to the ever-growing list of 'let's buy that' on the gardening site I buy from. Today. Will do it today. You've convinced me!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Gosh, it seems strange to think of freesias growing wild anywhere, but why?  My favourite blue bearded iris grows wild in the French Pyrenees after all........Sarah   An Itinerary in Light and Shadow   Finished Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving with no exacerbation since starting. EDSS was 7, now 2, hopefully will soon be less.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Vanessa,
Thank-you for the update and keep walking, even if its slow. This home came with a wheelchair as the owner did not have legs. I refused to use it inside until I had no choice as I was too weak to walk. It was stay in bed or use the aid. I got better, well up and down but now use wheelchair too much as its easier. I am back at PT to regain some strength and we are working on standing and my standing is getting better. My left foot drop is bad and they ordered a script for APO - I would like to borrow one like you did as I am unsure about it helping. I won't know until I try. A lot of things for me are better but I have a lot of areas to work on. My energy, mind, writing, bladder (comes and goes with flagyl). I use to have to use restroom at every soccer game last Fall. This Fall - I was able to skip the rest stop and that is an improvement.
I know I will get back to my walker full time soon.

What is the difference between a physical therapist and a physiotherapist?

Take Care

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Hi Wiggy,

Sorry for the silence. Haven't been on here lately. I am not sure of the difference between a physical therapist and a physiotherapist (maybe just a US/Aus terminology thing...) Hope you managed to borrow an AFO and it has worked out for you, along with other improvements. Wishing you all the best,

Vanessa :o) 

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

I missed you Vanessa, how you doing? ...

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.