Please see Styx thread on the Registered Shipmates consultation for the main discussion forums - your views are important, continues until April 4th.

Multiple sclerosis SUCKS too. And other neurodegenerative conditions.

Chances are you know someone who is affected by MS. The prevalence in the UK is around 190/100,000 and it is around 2-3 times more common in women.
I don't have MS but my sister has it very badly for the last few years and more recently Mrs Vole was diagnosed with it and had to take early retirement. She can still walk -just.
I hope that like the Cancer SUCKS thread there may be opportunity for mutual support.
Also maybe sharing of experiences of treatments and of the medical care received in general (Bouquets and Brickbats!).
Also maybe other conditions such as Parkinson's disease, motor neurone disease (ALS) etc would fit in this thread.
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Comments

  • DoublethinkDoublethink Admin, 8th Day Host
    I’m grieved for you and yours, I don’t have MS myself but I have worked over the years with people with MS, both as patients and colleagues.
  • Many years ago I put in a prayer request for an old friend recently diagnosed with motor neurone disease (MND as it is called in Oz). She was given a year to live and died excruciatingly four and a half years later. I said at the time that the neurodegenerative diseases were worse than cancer and what makes MND so hideous is the entrapment of an intact brain in a non functional body. At least she had not had a feeding tube or a tracheostomy or the agony would have been pointlessly prolonged.

    At least treatment of MS has improved with biological agents; back in the day it was steroids only with all the nasty side effects.
  • Thank you @Doublethink .
    And @Sojourner, yes, motor neurone disease is horrible. I was involved in the palliative care of a 50-something retired police officer with this condition and was with him when he died. I have to say the MND Association was very helpful and I think nowadays with medications including midazolam death need not be excruciating.
    Having said that Mrs Vole says that if her MS ever gets as bad as some cases can she wants a one-way ticket to Switzerland. If I was brave I would start a Purg thread on 'physician-assisted dying' as this is starting to be seriously addressed again and Scotland may be the first part of the UK to legalise it.

    I will post later about how biological agents to treat MS are being unfairly rationed, in my view, by NICE.
  • Thanks will await this and all the best to you and Mrs MV

    Yet again, I never fail to marvel about how folk run a mile before expressing a view on neurodegenerative diseases which are very common, yet everyone has their 2 bob’s worth re cancer.

    Just my 2 bob’s worth…
  • DoublethinkDoublethink Admin, 8th Day Host
    Merry Vole wrote: »
    Thank you @Doublethink .
    And @Sojourner, yes, motor neurone disease is horrible. I was involved in the palliative care of a 50-something retired police officer with this condition and was with him when he died. I have to say the MND Association was very helpful and I think nowadays with medications including midazolam death need not be excruciating.
    Having said that Mrs Vole says that if her MS ever gets as bad as some cases can she wants a one-way ticket to Switzerland. If I was brave I would start a Purg thread on 'physician-assisted dying' as this is starting to be seriously addressed again and Scotland may be the first part of the UK to legalise it.

    I will post later about how biological agents to treat MS are being unfairly rationed, in my view, by NICE.

    Epiphanies might be a good place for such a discussion - it being a very sensitive subject.
  • I would beg to differ; few want to touch it with a barge pole (? Lack of knowledge/ experience) & I suspect it will languish wherever it goes.
  • RuthRuth Shipmate
    In the US medical aid in dying is legal in California, Colorado, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont, Washington, and Washington DC. I have no idea why you think people wouldn't discuss it.
  • Well, go for it. Start a thread, whatever.
  • DoublethinkDoublethink Admin, 8th Day Host
    Are you ok Sojourner ? You seem very pissed off with everything at the moment.
  • Doublethink:

    I am more than fine and not remotely pissed off, thanks. I’ve noted before & have noted again that neurogenerative diseases are not exactly a hot topic on these boards ( this thread makes it clear in terms of lack of contributions compared to the pages and pages on the cancer thread). Dunno why, not dramatic enough, not exciting enough, not topical enough, who knows?

    Ruth has said she has no idea why such a thread would not fly in Epiphanies. Fine. I suspect it would not for the presumed reasons it has hardly flown in Hell.

    However if a few others apart from you & I put in a contribution I might be prepared to consider otherwise ( not that it is a hot button issue for me.

    Hope that is clear to you now.

  • HuiaHuia Shipmate
    My oldest brother was diagnosed with Parkinson's some years ago. He was first diagnosed about six or seven years ago. He is in care in another city. Every time I visit I wonder whether he will recognise me.
  • BoogieBoogie Heaven Host
    I’ve got a neurological condition (cervical stenosis). It isn’t life threatening but is is severely life limiting and it sucks.

    Hoping the op I'm waiting ( and waiting and waiting) for will sort it out. I’ll have two discs replaced and a cage in my neck.

    But there are no guarantees.

    😢

  • Merry Vole wrote: »
    Having said that Mrs Vole says that if her MS ever gets as bad as some cases can she wants a one-way ticket to Switzerland. If I was brave I would start a Purg thread on 'physician-assisted dying' as this is starting to be seriously addressed again and Scotland may be the first part of the UK to legalise it.
    There was such a thread sometime in the last few years (I think, but maybe longer ago), but if it hasn’t been lost at sea, I can’t find it.

  • Nick Tamen wrote: »
    There was such a thread sometime in the last few years (I think, but maybe longer ago), but if it hasn’t been lost at sea, I can’t find it.

    This one?
  • kingsfold wrote: »
    Nick Tamen wrote: »
    There was such a thread sometime in the last few years (I think, but maybe longer ago), but if it hasn’t been lost at sea, I can’t find it.

    This one?
    Ah, maybe so. It was more recent than I thought; since I thought it was longer ago, I looked everywhere except Epiphanies.

    Thanks!

  • Just chiming in to say that around here, I know a lot more people suffering with cancer than neurodegenerative conditions. A friend of a friend died of MND (I think), and a minister of a local church retired early with Parkinson's. On the cancer threads I don't chip in with 'hey, I know someone with a brain tumour' because - well, it doesn't seem very helpful, to say the least. And the same applies here - but I would be very interested to read about what it's like to deal with this stuff, if anyone wants to share or (as seems to be the point with the cancer thread in Hell) get it off their chest.

  • Same here. I have a somewhat rare condition, but by no stretch of the imagination does it fall under this, and not having anybody I'm close to currently suffering any of this means I can't really participate in the thread at all (except by praying, I suppose). No need for anybody to assume that the lack of posts on the thread are for lack of caring.

    As for cancer, I fear that on any given day, I DO know at least one person with it; the incidence is very high. Five in my immediate family in the past five years, plus Rossweisse and two church friends.
  • I have MS ☹️
  • Thanks Priscilla, I am well aware of this and good that you have posted.
  • @Sojourner - It is not a fair comparison to compare the number of posts on a thread started a couple of weeks ago with one started three and a half years ago, and which was a continuation of a thread on Ye Olde Shippe™. I don't think you can conclude that a newly minted thread is going badly when you are comparing it to a well-established thread which has said goodbye to several Shipmates over the last year, and before, it is summer holiday season in the northern hemisphere and that it can take a while for some threads to start garnering posts.

    I am another person who, while not dealing with neurodegenerative diseases, is sympathetic as dealing other genetic conditions that can only be managed to try and maintain as much function as possible, and with the knowledge that deterioration is only too likely.
  • Sigh…whatever you think ,CK , it’s all the same to me. In my view, “ fairness” is not the issue.

    As for “ deterioration is only too likely”; I beg to differ. A lot of water has gone under the bridge in the last 50 years and not all neurodegenerative diseases have the same terrible prognoses as they did in my youth. The world is full of incurable conditions including ageing ( as I am having to accept).
  • RuthRuth Shipmate
    Sojourner wrote: »
    Ruth has said she has no idea why such a thread would not fly in Epiphanies. Fine. I suspect it would not for the presumed reasons it has hardly flown in Hell.

    I thought you were referring to discussion of death with dignity / aid in dying.
  • Nope
  • Just to clarify further, Ruth et al: what sucks is the losses: independence, mobility, control of bladder/ bowel function,sexual capacity, speech, cognition and so on. One such loss or limitation is bad enough.

    I recall the gradual decline of our recently departed Sir Kevin: there were some odd posts years ago and on at least one occasion he was sharply pulled up by a Host. I remember thinking that the reproof was a bit OTT given that his contribution was harmless, if off topic. He never posted again and very short time later Zeke came on board to tell us the diagnosis; all of a sudden it made sense.
  • RuthRuth Shipmate
    My father had Parkinson's for over 25 years before he died. I have a sense of how much neurodegenerative conditions suck.
  • Nothing like personal experience
  • Doc TorDoc Tor Admin Emeritus
    @Sojourner - enough sniping at the Hosts. Keep it for Styx.

    DocTor
    Hell host
  • Not a snipe, DT.

    The Host in question ( RIPRIG) was someone well known to me IRL and for whom I had a lot of time.

    Stop looking for nastiness where it isn’t.
  • Doc TorDoc Tor Admin Emeritus
    If you have a problem with a host post, the place to raise it is Styx, and I know you know the way there.

    Cease and desist here.

    Doc Tor
    Hell host
  • Get off my case. In the matter recently discussed I did not and have made that clear.
  • It would be a pity if this thread were further derailed….
  • Doc TorDoc Tor Admin Emeritus
    No idea why you're jonesing for a fight, and less do I care.

    Referred to the rest of the Admin team for a C6 foul.

    Doc Tor
    Hell host
  • Fine thank you
  • RooKRooK Shipmate
    edited September 2021
    [ HOSTING ]

    The last few posts by @Sojourner are C6 violations.

    ANY and ALL comments about official Hosting actions may only be done in the Styx, other than brief acknowledgement.

    There will be no more warnings. The next official action will be suspension.

    -RooK - Hellhost Reservist

    [ /HOSTING ]
  • Boogie wrote: »
    I’ve got a neurological condition (cervical stenosis). It isn’t life threatening but is is severely life limiting and it sucks.

    Hoping the op I'm waiting ( and waiting and waiting) for will sort it out. I’ll have two discs replaced and a cage in my neck.

    But there are no guarantees.

    😢

    I have been diagnosed with a stenosis of the lumbar spine, as a result of the gradual loss of feeling in my feet and legs. This now limits my standing and walking to a few minutes at a time, and usually no more than half an hour maximum. As @Boogie says, extremely life-limiting.

    I'm scheduled for an MRI this coming Tuesday to get a better idea of the extent of the problem, then back to the neurosurgeon in a couple of weeks. He is confident that a laminectomy will relieve the problem.

    Fortunately, I have held top-level health insurance with our union-affiliated health fund for almost fifty years, so should have the surgery prior to Christmas in a private hospital with no topup charges. My recent hernia repair in the public system took 18 months from referral to completion, so Boogie has my sympathy in the waiting, waiting, waiting.....
  • HuiaHuia Shipmate
    Best wishes for speedy, successful surgery Barnabas_Aus.
  • BoogieBoogie Heaven Host
    All the best @Barnabas_Aus I hope the laminectomy really improves things.

    My friend’s son, who is only 40 is having the same problems and is on the list for the same op. These things can hit at any age.

  • Gee DGee D Shipmate
    edited September 2021
    Barnabas Aus: Our thoughts and prayers for Tuesday.

    You're right about having good insurance and lucky to be able to arrange it as you did (I assume that the premiums are less than usual market ones for that fund).
  • Thank you all for your support.

    @Gee D the last couple of years have shown the value of good insurance. From the cardiac arrest and catheterisation in May 2019, I've had three further surgeries with the approaching fourth soon. I've spent more time in hospital in that brief period than in the previous 68 years. As you suspected, the premiums are less than the general market and benefits are substantially better than commercial funds.
  • You are very fortunate (i) to have the insurance and (ii) better premiums. We have very similar insurance but pay an absolute fortune for it. We just hope that we don't need it.
  • Gee DGee D Shipmate
    edited September 2021
    And at some times (fortunately very rare) insurance is not necessary. A friend, a white woman and at the time in her late 50's, needed a very specialised operation. I mention those details as those suffering from the condition are overwhelmingly black American men in their early 70's. It was so long and detailed that despite all the insurance the family had, she could not have it as a private patient but only on a public basis. That gives the Commonwealth govt the power to control access to it. Some 8 or 9 years later, she's now preparing for a repeat. That will be covered in the same manner as will the one after that. But after then, she may perhaps be covered, but not for anyone over 80.
  • I sincerely empathise with you folk suffering from spinal problems. Maybe the NHS is not so bad.
  • a whinge about the NHS and MS:

    85% of MS 'cases' are relapsing remitting. (cf primary progressive).

    And DMTs (disease modifying therapies) are 'allowed' to be prescribed, or changed to a different DMT depending on the presence of relapses.

    A relapse (or flare-up or attack etc) is defined as 'the appearance of new symptoms or the return of old symptoms for 24 hours or more' (assuming other cause of symptoms eg infection is excluded). But most (all?) specialist teams will only count it as a true relapse if new or active lesions are seen on an MRI scan. But the availability of MRI (like most things in the NHS) is limited by waiting lists. So if your MRI scan is a few weeks after the suspected relapse then it may not show as 'active' on the scan. So then you don't qualify for a change to a different DMT.
  • Doc TorDoc Tor Admin Emeritus
    Parkinsons has taken my mum's longtime neighbour and friend this morning.

    Mourning and relief intermingled.
  • BoogieBoogie Heaven Host
    Doc Tor wrote: »
    Parkinsons has taken my mum's longtime neighbour and friend this morning.

    Mourning and relief intermingled.

    So sorry 😢🕯

  • MaryLouiseMaryLouise Shipmate, Host Emeritus
    Sympathy, @Doc Tor.
  • Many, many years ago I kept house, in exchange for free rent, for a gentleman who had MS. He had been a schoolteacher. His wife filed for divorce after he was diagnosed. She even went so far as to steal, and cash, an income tax refund check from his mailbox.

    He did pretty well considering everything. Marijuana got him through the rougher times. Pancreatic cancer is what finally did him in.
  • Sorry to hear that @Doc Tor

    @Merry Vole - that sucks - is it universal?

    (My daughter's just changed consultants and the difference is huge. The previous one was a total waste of time, literally - he did nothing, but seeing him meant a 6 hour round trip to attend, that being a wrinkle as to how the NHS trust regions are carved up.)
  • My sympathies too.

    @Curiosity killed I only know that that is what happened to Mrs Vole. But at least her Tecfidera is low on side effects. I'm glad about the new consultant for your daughter. My experience is that MS sufferers mustn't accept a sort of pessimism or apathy (from the MS team) that seems to set in when the disease seems to be progressing towards a certain level of disability; the Expanded Disability Status Scale (EDSS) is important because above a certain score you won't qualify for a DMT. (see mssociety.org.uk for more details).
    My sister's MS quickly reached a high score so she has sadly never been offered any treatment.
  • (My daughter doesn't have MS, but another long term genetic condition that isn't well controlled at the moment, 3 years of not a lot of help has not been fun.)
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