Hi All As you probably noticed recently I came to join this family of friends and was welcomed with open arms, thank you for that 
it gave me a lift from a darker hole. With all the mixed up emotions of being told that for a medical issue that I thought was the remnants of a slipped disc leaving me with on and off mobility problems, the diagnosis was actually PPMS. I am now sleepless at times and in fear of what the future may hold. There is a lot I do not understand, and will probably find it hard to explain enough to expect clear advice from you lovely people here, but any tips will be gratefully received. Today I have walked fine, today my brain doesn’t feel like it has had a hot water bottle snapped around it. Tomorrow as it was on and off last week and next week may be so again. On a business visit to Skipton last week the 200 yards back to the car park left me clinging to a wall in sight of my car planning how to get there without crawling or asking for help. I faked taking in the scenery before completing the challenge B-) The advice I seek is about help with mobility, I have never claimed any benefits and living on my own in a not so accessible old building , although I am coping with it now, I fear things are changing. Thanks for listening and hope someone can give me some ideas. Regards Paul
Hi Paul mobility or keeping mobile is certainly a problem I like yourself am still working, I find that I take my stick with me nowadays. I started by having a folding one in my briefcase but these days I use a wooden one. I find just knowing I have the stick gives me confidence. You should get your home assessed to see if there are any aids that would help you around the home . I got this done through the local council but I think your gp can organise this as well. You might also look into applying for Disability Living Allowance before it gets reinvented as PIP next April. You can get details online. Also apply for a blue badge so that you can park nearer the places you go. If you have a main base see if they can allocate you a parking bay near to the main building.
Hope this helps in some way and hope the gorilla stays away.
chin up
Mark
Hi, seems like Mdicker has given you the same advice i would have.
I have had OTs here many times and they have always come up with good advice/equipment to make my home a safer, and user friendly place.
Physios also helped in my early days, by giving me exercises and a walker.
DLA would help with the purchase of a car, if you are successful in applying for it.
Good luck.
luv Pollx
Thank You Mark and Poll, I will put some work in on it all after Christmas. I have many more things to ask both at the hospital and from others kindness here on the forum. Happy Christmas to you all. With grateful and happy wishes to all the gang, From Paul
Hi Paul. l take my stick out with me. l have two when legs don t want to play. OT has just sent me a walker may be a little time before l feel l can take it out with me silly l no but thats me, but then l do go to the shops, on my scooter as its a way away or l would not get out. Ms is diff for everyone so we all need diff things to HELP us get on with it. speak to your OT they are there to help, and take it one day at a time rest when you can. This site is brill and someone will have a answer .
Take care regards Jan
Thank you Jan, it is really good to hear answers, of which I feel I may need many. I hope you all don’t get bored of me asking. I feel like the apprentice starting without a clue (something I actually did thirty years ago). I am a company director with many pressures, and many obligations which at the moment are in the main not affected, I know that’s just a matter of time. And this is why I am so confused about what to do next, I am just continuing every day as before except with every second thought is I’ve got a progressive illness that will change all of this soon. So… After all the tests a neurologist sat forwards on his chair and told me that I had primary progressive multiple sclerosis. I left the room in a daze went back to my business and actually cried in my co-directors’ arms and she was great about it. I see here often people discussing medicines, ms nurses and other help, I have none of these and my next appointment is in April, is this normal? More advise needed please I am so grateful for your kind replies. Regards Paul
Hi Paul, never feel bad asking questions on here. We are all in the same boat… told we have this thing called ppms and then left to get on with it.
It’s normal to see the neuro once a year. Sometimes a neuro will say there’s no point in even an annual appointment… as so little they can do. Some of us don’t see the point either! It is useful if you are on benefits (the letters from the neuro are useful to send to DWP) … but also because when new drugs come along you have better chance of getting them.
Not all hospitals have MS nurses. When you go in April ask if they have one and if you can see her/him. They are quite useful because they have more time than the neuro and they tend to have more practical knowledge. I’ve only seen an MS nurse once, but it was for an hour and she gave me some good tips on handling fatigue and living with long-term condition.
In terms of the future, well the thing is with ppms none of us know how quickly it will progress or in what way it will affect us. That’s why the ‘one day at a time’ mantra is so useful. Some people are able to continue to work for many years… some until retirement age. The chances of ppms getting much worse very quickly are in fact very small. For most people it is a slow progression… so in other words the chances of waking up one morning and not being able to walk are extremely small.
Also for some people with ppms it reaches a plateau and stops progressing altogether.
I would advise you to carry on as you are. You can make adjustments to your working life if and when you need to. Try not to think ahead of your MS. The ‘what if?’ thinking isn’t worthwhile… it might never happen… and if it does you will make the adjustments then.
Hope you find this useful Paul. In time you well get over the constant thinking about it… believe it or not it does sort of become normal.
‘One day at a time’.
Take care hon and Happy New Year,
Pat x
Sorry… forgot to mention med’s.
The drugs for ppms are somewhat limited… but there is stuff that can help with pain, tremor, spasms… etc etc. In other words, stuff that will help symptoms. The main ones are Gabapentin, Pregabalin and Amitriptyline.
Gabapentin and Pregabalin are both drugs that were developed for epilepsy but have been found helpful for pain, tingling, etc with MS. Amitriptyline is an antidepressant but in lower doses found helpful for MS. There’s a few others but mind has gone blank!
If you have any symptom you would like help with, come on here and ask and we can give you advice on the best med’s. Then you can go to GP or ask the neuro in April.
Hope that helps…
Pat x
Pat If only you knew how much the time and consideration you have taken to send that help and information has meant to me. Thank you. @-}-- Paul
HiPaul, there is not a lot I can add to Pat’s info (she’s good!). One thing that you may consider (or it may be a step too far (pardon pun) is getting a collapsible walking stick. I know that experience of getting stuck and having to pretend you are just looking at the scenery; of course the touble with that is having it about your person when you need it (once collapsed, though only about 10" long). I was accused once of having drunk too much - using the stick at least stopped that. Just a thought. Also … the new drugs currently being trialled for MS (Amiloride and Phenytoin) have potential to halt progression - it is the first time really (in my 27 years with MS - gulp!) that any medication has been talked about in relation to PPMS. (Trials end 2015)
Debs x
Thank you all as always That drunk thing I live near a country pub and park on a little slope near my cottage, when I parked recently and legs decided to freeze up as I made my way in, a voice from the smokers coven called out "you shouldn’t be driving idiot! " I was so embarrassed, annoyed and frustrated at the same time. :@ Never mind
Just make sure you claim all benefits that’s you’re entitled to, and don’t listen to the government cr*p about austerity measures and sharing it with the whole of society. Get DLA at the highest rate and a Blue Badge from your local county council; also ESA in the support group if you cannot work. I get a brand new automatic car every three years from Motobility by sacrificing the mobility element of DLA. Remember MS is incurable at the moment!
Rgds Steve
Hi Paul,
There is so much good advice here already that I hesitate to add anything else, but I’ll add stuff from my own experience which may be helpful…
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Definitely get a foldable walking stick. This gives you the option of having extra support when you’re having trouble walking, and above all it serves as a very strong signal to the general public that you’re not as quick or as agile as they want to you to be, and you’re not drunk, and you’re not just dawdling annoyingly. You will also find that 99.9% of people, once they see the stick, will bend over backwards to be helpful and kind, give you seats, and give you the time and space you need to get from A to B.
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One little detail about walking sticks: do get expert advice on having it at the right length. If you set it too short, you risk discomfort in your back. When you’re standing up straight with your arms relaxed, the top of the stick should be at the two knobbly bones on either side of your wrist - but this is only a general guideline, and I found it useful to have my stick an inch taller to prevent discomfort in my back.
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Get an MS Nurse. Mine is fantastic. She is always there for me whenever I have worries or doubts or questions, she is practical, hugely supportive, and very expert. Without her, life would be harder.
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Contact an Occupational Therapist to get good practical advice on changes to your environment at home and/or at work. Even if you take none of the advice, it may open your eyes to issues and possibilities which weren’t perhaps at first obvious.
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Get physiotherapy. You can improve your gait by strengthening muscles to compensate for nerve damage.
Stay in touch with us here, keep us up to date with developments! We are here for you, in this very exclusive club which no one wants to belong to!
Take care, and take it easy,
Chris
Thank You Chris and to you too Steve for your previous post. With the DLA, it is difficult, I don’t feel overall I am disabled enough to apply, but I know the onset of these symptoms is gathering momentum and shock moments where walking abruptly stalls are increasing. At the moment I rent an old cottage, I love it, but if things keep deteriorating, to get to it and to cope with its layout will become too difficult. Oh! So many questions, sorry guys :-/ Where is the best place to get a stick ? Oh, I have my first physio appointment on the 16th . Been trying to contact my neurologist to find out about ms nurse. And I have not been prescribed any medication, so that’s a question unanswered, but can’t get through to them. I will probably opt to in to my own gp on Monday… You are all so great here. Thank you. Paul
Hi Paul, It all does feel a bit overwhelming doesn’t it… but try to stay in the ‘one day at a time’ frame of mind.
Sometimes though a bit forward planning does help, esp where housing is concerned. If and when you cannot manage in the cottage any longer you will probably be able to apply for social housing as disabled person. If you live in a borough that accepts people onto the council waiting list, it would be worth putting an application in now. Of course nothing will actually happen at this point… but it will make it a bit easier if and when you HAVE to find somewhere else to live. It would be worth giving the housing office a ring & finding out anyway.
Walking sticks… well there’s a huge variety. Boots do some good ones or you can by online. Loads of sites sell them. Get one of the adjustable type so you can change the height to suit you. Also a folding one is useful if you don’t have to use it all of the time (also folding ones are useful in restaurants etc as they tend to get in the way). Some of the better ones are ‘egonomically’ designed. These put less stress on your hand and shoulder and are worth the extra money. Again online or Boots do a good one that folds as well. The best height is that your hand should be level with the top of your leg… anything lower or higher will hurt your shoulder and back.
Might be worth waiting until you see physio as they will have more info and might be able to provide a good one free.
Yes speak to your GP about med’s. Try emailing the MS nurse… there should be a link on hospital website.
Hope this helps,
Take care
Pat x