[susan2301Participant]

Hi to all on here

I already posted on the old forum and Bridget very kindly answered and directed me to this one

I am writing on behalf of my Dad.

Dad was recently diagnosed with myeloma, long story which you have all been through.

He lost the use of his legs but through sheer grit and determination he is now walking again. Problem is that he is really wobbly still.

Has anyone else experienced this ?

Susan

[ElizellenParticipant]

Welcome to our family, Susan.

It sounds as if your Dad is a true fighter to have got back onto his feet again.

I am sure there are walking aids that they can let him try to see if they will help him move around while he becomes stronger without risking falling. Maybe asking his specialist nurse would help?

One piece of kit my husband has found useful for his weak/wobbly legs after spending some time in bed due to pneumonia recently was one of those pedal exercising gadgets that let you sort of 'cycle' while sitting down. We bought ours at a charity shop and it really helped him start to build up his leg strength without wearing him out.
I looked on ebay and there are loads there – I have attached a couple of photos of them so you know what I mean

Elizabeth
XX
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[GillParticipant]

Hi Susan

My husband was diagnosed about 2 years ago. His spine was damaged by the mm and he could not walk without the aid of crutches. To get out of a chair or up from bed made him shout out in pain and I thought it would just get worse and worse.

After radiotherapy, chemo, steroids and an SCT Stephen's mobility has improved no end. He now walks about 4 miles a day and needs no crutches nor walking stick.

He does still suffer from back pain but it is manageble with mst and gabapentin. He walks a little lop sided but manages very well.

I know that this is such an individual disease that it may not be the same for your dad but fingers crossed that, like Stephen, it improves with treatment.

All the best Gillxx

[KWilsonParticipant]

I replied to this on the old forum and then realised nearly everyone has 'moved house'.

Anyway, welcome to the forum.

Maybe a good idea to get scanned to find out what is causing the decreasing mobility and this will give you more information as to what's causing it and any suitable steps to take to improve it.

I hope that once the chemo/radiotherapy kick in the mobility will improve, it did with me.

Good luck to you on your journey with your Dad through this siatuation#

xxx

[susan2301Participant]

Hi Bridget and thanks for the reply. when I said he was walking wobbly, what I should have said is that he is really walking 20mins to half and hour and does not really need his stick for balance. He is just sometimes feeling a little wobbly.

I am taking him off to my physio on Thursday who I also work with and we are going to do some neurological exercises for balance, so that I can do them with him.

He does have that little bike thing you are one about, and used that in the earlier days to get his strength up

Thanks again

[susan2301Participant]

Many thanks

susan

[MariParticipant]

Hello Susan,

My husband had a simliar experience to your Dad's. His myeloma was diagnosed last January when he lost the use of his legs and underwent emergency spinal surgery. You mention taking your Dad to your physio. He should get physiotherapy on the NHS from a specialist neuro physio. You may have to push for this, we certainly had to, but get on to his GP and make sure he gets the right treatment. My husband Steve had several weeks of physio, including hydrotherapy which helped him regain his ability to walk and strengthen his legs and muscles. Steve was also able to take advantage of an arrangement between our local GP's and the Gym, he was able to use the gym and pool and the services of a personal trainer for a reduced cost. You are right, your dad's wobbliness is probably neurological and it will take time for him to recover. We were told between 12 to 18 months. It is now nearly 11 months since Steve's op and he has been through a great deal of treatment for myeloma and he is still improving. He no longer needs a stick, ( he used to use two!) and his stamina is improving all the time. It is a long job but it sounds as if your dad has the determination to keep going. It seems to me that a combination of hard work, determination and patience is needed. The nerve damage just takes time to recover although you can do a lot to help the recovery on its way.

I hope your dad continues to make a good recovery and his treatment for the myeloma goes well,
Best wishes,
Mari xx

[mhnevillParticipant]

Hi Susan
I had a similar experieince to your Dad and had to have surgery.
I am now getting mobile again with superb help from the mobile physio, however, I am still wobbly and it is taking time for the strength to come back to my legs. I am only just beginning to use crutches rather than a zimmer, for some of the time. This is ten weeks post op.
I am practising getting upstairs, one at a time, and coming down, gengerly, backwards. I hope to sleep upstairs again soon.

I find that setting myself goals, with the physio is helping.

Best wishes to your Dad and to you. There is so much to get your head round, isn't there. I am awaiting Radiotherepy,

Mavis

[mhnevillParticipant]

Hi Mari
I was interested to read in yuour post that Steve had a similar experience to me last January ?2010. I was diagnosed and had my op in Septembet this year. I am awaiting radiotherepy, but the story about further treatment changes all the time as to yes or no to immediate chemo. I am currently awaiting a recent blood test result.

What i am interested in is, did Steve have chem and if so what, and with what side effect?

Best wishes to you both.

Mavis

[tomParticipant]

Hi Susan

And a warm welcome to this site(I moved in a few weeks ago and just put new curtains up ha ha)

Sorry to hear about your Dad, and reading your post it sounds as if he has guts and determantion:-D

I cant offer any help in this matter as i am doing great since stem cell transplant, and never been wobbly!

Good Luck to your dad and am wishing him well

Tom xx

[MariParticipant]

Dear Mavis,

Yes Steve had his op on 7th Jan 2010. His consultants decided not give him any radiotherapy as they felt the chemo would deal with any of the tumour that was still left behind. He came out of hospital end of Jan and started CDT in mid February. At the time we were told this was the 'gold standard' in treatment but things are moving so fast in myeloma research that I believe new treatments are now being used. You need to talk to your consultant about all the possibilities but I understand a recent trial involves cyclophosphamide, revelimid and dexamethasome, (CDR) instead of the same cocktail but with thalidomid that Steve took. He had five cycles and his paraproteins came down to 'undetectable', its hard to be accurate apparently at low levels. However his paraproteins were never extremely high, 33 at its worse, but he did have the spinal tumour which of course was very painful and debilitating. On his paraproteins alone his consultants did not think he was quite bad enough to treat at that stage. This is such a difficult disease to get a handle on, everyone is different but I am begining to think there are some pattern in people with similar types of myeloma, Steve has IgA, lambda. He has since had a Stem Cell transplant in mid September and is making a phenomenal recovery. He has not used sticks for some considerable time and was even able to walk in the snow yesterday. He planned to return to work on last Thursday but was prevented by the lack of trains due to the weather! I know things must seem really tough for you right now but there is hope. When Steve came out of hospital he could not do anything for himself, I had to dress him, get him into bed etc. but he has come on so much. He is determined, downright stubborn some might say and he has worked hard but it has paid off. Hang in there, i hope you will have a similar outcome. But please be gentle with yourself, physio is tough and I sometimes think he over did it. I thought he made as much progress when he was in hopital having his SCT and enduring enforced rest! As we approach a year since this all started we are facing a much brighter future. Take care of yourself,

Much love, Mari xx

[MariParticipant]

Sorry after such a lengthy post I forgot you asked about side effects. I think Steve's side effect were made worse by the shock of suddenly going from a fit healthy man to someone who was totally dependant and incapable. He got pretty depressed and anxious, totally out of character, but he had a wonderful counsellor who helped with that. He found the combimantion of dex and thalidomide made him really exhausted as the cycles progressed. He was fine for the first two. Its hard to tell if he had any neuropathy as he had lost so much feeling with the spinal injury, this is slowly returning now. He can drive etc with no problem. All his side effects went away pretty quickly when he came off the chemo. He finished in early June and was very well through the summer. I hope this helps,

Mari xx

[suewiParticipant]

Hi Susan
I am having problems with my legs, very weak and wobblyI feel like I am going to fall over some days it take me all my time to walk about, but for this I feel fine, anyone else experiencing this pls.

Hope all goes well for you

susan

[suewiParticipant]

Hi Mavis
What was the problem with your legs pls, well before I started treatment my legs were very weak and wobbly, just feel like I am going to fall over, not much control at all, but for this I would be fine, no pain at all.

Susan

[mhnevillParticipant]

Hi susan

I have got a bit confused with this post. My experience is that my mobility problems are because of bone problems and not because of drugs. I have had soreness with my toes and bottom of my legs. I have found it difficult to find comfortable shoes – in fact I haven't!

All best wishes.

Mavis x

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