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This topic contains 29 replies, has 9 voices, and was last updated by Avatar pcolunio 3 months, 1 week ago. This post has been viewed 2330 times

Viewing 15 posts - 1 through 15 (of 30 total)
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  • #7273
    Avatar
    leo vogel
    Participant

    I am a optimistic person. And I can see possibilities for this forum, there are and always will be people interested in this forum.
    But personally I start to feel like the last dinosaur in his age.
    It is sad to see “forum friends” leave because “the Beast” finally got to them.
    But what do you expect on a MSA forum? It’s a hard disease…..
    I’ll be around for a while.
    Leo.

    #7278
    Avatar
    Dooglass
    Participant

    Hi Leo,Hope you stick around for a long time yet, you have been an inspiration to a lot of people, you’ve made the beast a familiar foe who’s aspects we all eventually have to deal with!

    It is depressing how posts thin out compared to other sites like Parkinson’s but it is helpful and Informative.
    It’s the nature of the beast!

    Keep up the good work
    Kind regards
    Doug

    #7282
    Avatar
    leo vogel
    Participant

    Hi Doug,
    thanks for your kind words.

    Greetings, Leo.

    #7338
    Avatar
    chickenlegend
    Participant

    Hi Leo
    Your pal Wayne just arrived

    Im going nowhere without a fight and I want to collect as much info as poss to kerb this beast.
    Things like the best combo of meds, does exercise help, etc

    #7346
    Avatar
    leo vogel
    Participant

    Hi Wayne, that’s the spirit!
    About medicines: MSA is a very individual disease, for some is Sinemet (levadopa) very important up to 1200mg per day. Some of us do not react on the stuff. I find Northera (droxidopa) helpful against the NOH (Neurologic orthostatic hypo-tension) effects.
    Before I had my supra pubic catheter installed I had each day nitrofurantoine against UTI’s
    And before my stoma I had all kinds of stool improving stuf (non helped shit).
    Against pain problems I take Ibuprofen for local pains and Fentanyl (opiate/morphine) for more neuro-related pain.
    Because my breathing is going downhill I use Budesonide (Cortisone) through my bipap breathing machine to avoid lung infections/inflammations.

    I think you can never do to much exercise. Yoga, Cesar and physiotherapy as much as you can get.
    But, more important, I think living with MSA is an on-going exercise; “use it or lose it”. Keep on going, stretch your possibilities, don’t give up. And BE VERY CAREFUL, do not fall. Try to avoid hospitals!!!!!
    Greetings, Leo.

    • This reply was modified 2 years, 4 months ago by Avatar leo vogel.
    #7350
    Avatar
    chickenlegend
    Participant

    Hi Ya Pal

    Thanks for that the more we share stuff like this the better for everyone. Yes everytime I see my specialist he ups my sinemet on ropinerol as well. I self caterise just bulky to carry around but a must.Im not in permanant pain more aching hand and wrist, get back pain from time to time just live with it at moment. I seem to be good at falling let me re-fraze that i know how to fall without braking anything.Not falling at all is best. I use my breathing machine at night. Wife loves it cause stops me snoring.Got a cough assist machine as well . i fancy a go at Yoga I go to physio and got exercises to do but with working hard to find time to do them when not tired.Can you believe this stuff on the net about our life expectancy im not going to quote any timescales it shit you up pardon the french.i will proove them wrong anyway.
    wayne

    #7358
    Avatar
    Pintsize
    Participant

    Hello! I’m Gill and new to this site. I am a carer for my husband. Has anyone else got R.E.M. Sleep disorder? I’ve had to move into the spare room as he’s attacked me so many times and also screams, shouts, cries and laughs during the night. Also, anyone else got Myonclonic jerks? I feel so very isolated not knowing a single soul who also has this disease. Can anyone give me an honest answer as to life expectancy with this damn disease? Dick was diagnosed with Parkinson’s 3.5 years ago (although had been displaying symptoms for at least a year before agreeing to see our GP) and only had MSA confirmed last month.
    Thanks to all who can help.
    Gill

    #7363
    Avatar
    Forum Moderator
    Participant

    Dear Gill,
    Prognosis is very individual. We know that MSA shortens one’s lifespan, but we can’t say specifically for each person. Most text books say 7-9 years from the start of symptoms.
    The REM sleep disorder can be treated, as can the myoclonic jerks. Do discuss it with your husband’s Neurologist.
    You might find it helpful to come along to a support group, so you can meet other carers who are dealing with the same issues. Our support group calendar is on our website or you can phone the MSAT head office to find out where your nearest one is.
    Kind regards,
    Samantha MSAT Nurse Specialist.

    #7368
    Avatar
    leo vogel
    Participant

    Hi Gill,
    be very welcome on this forum. REM sleep behavior disorder is pretty common with MSA patients.
    This is indeed a individual disease so I can only speak about my own experience. I had some sleep problems in the first year after diagnosis. I took lot of levadopa in this period. After I reduced the intake of sinemet (levadopa) and started using a Cpap breathing help overnight my sleep got a lot better.
    I think the prognosis is maybe depending on age and general condition and where you live on this world; 5 to 7 years from diagnosis.
    Please say hello to Dick and tell him he is not the only one.
    Greetings, Leo. (from Holland diagnosed in may 2012 MSA-P)

    #7408
    Avatar
    troublesome3
    Participant

    Hello everyone we have not been on the forum for quite along time but I’m at the end of my tether Mark has just come back out of hospital for the third time in 11weeks with pneumonia. It comes on so quickly. He becomes so confused. Now they say he has got to go for ct scan because they have found activity on his right lung but know one will explain what it could be. Does this ever end. Also we are fed up telling hospital docs staff what MSA is and that it is NOT Parkinson. Its just one thing after another does anyone else have the same problem please? Take care

    #7412
    Avatar
    leo vogel
    Participant

    Hi Troublesome3,
    This is my opinion, everybody should make up his/her own mind.
    This spring I had a 20 days stay at the IC of our local hospital. I had some serious long problems.
    After I got home I decided to get a declaration. It says;

    Let me die in peace. I accept painkilling but refuse treatment.

    In Holland you can get a form with a legal text with this message.
    I think any adult human being should have the right to say “enough is enough”.

    Again, this is my personal opinion. I do not know the situation you are in.
    I hope Mark gets better soon and that the two of you have some good years together.

    Greetings, Leo.

    #7421
    Avatar
    troublesome3
    Participant

    Thank you Leo I wish we had something like that. Mark has had msa for 2 years and it took another 3 to diagnosis he also as cerebral palsy which effects all his left hand side (left side smaller than right and goes into spasm) and just to put the cherry on the top has COPD. But we still have our good days and we shouldn’t moan but its just as if you are hitting your head against a brick wall more and more. Hope that you keep smiling take care x

    #7423
    Avatar
    leo vogel
    Participant

    Hi Troublesome3, It is alright to moan. But you are very right; do enjoy the good days!
    Keep up the good work,
    Greetings, Leo.

    #7433
    Avatar
    Forum Moderator
    Participant

    Dear Troublesome3.
    If you let us know whenever Mark goes into hospital we can send some information to the ward so they are better equipped to meet his needs. Do also give the staff our contact details and they can call one of the nurses for advice as required.
    Kind regards, MSAT.

    #7437
    Avatar
    troublesome3
    Participant

    Thank you that will be very helpful as we are finding that they are most of the time in the dark about MSA and will often ask if I’m sure its not Parkinson’s. Could you possibly tell us whether complete confusion is part of this problem as Mark suddenly without warning gets a high temperate, fast heartbeat and becomes very confused( got lost at top of road didn’t know how to get back home) and then ends up in hospital. Last time SATs 85 heartbeat 104 temp 38.2 then rushed yet again into hospital. As I said one day fine next with no warning this.

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