Home Forums Surfcoastwombat’s MSA Forum No one should have to suffer like this

This topic contains 1 reply, has 1 voice, and was last updated by  Leonard Visconti 3 years, 9 months ago.

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  • #1314

    Leonard Visconti

    In Oct of 2008 my wife (Susan) was diagnosed with ‘something’. The ‘something’ was observed by the neurologist caring for her dad (who they believe had Lewy Body Disease) as the doc noticed something telling in her gait & asked her to schedule a visit. It took about 6 months to determine that her likely disease was MSA. Over the first 2 years things progressed her condition worsened. She went form a cane to a basic walker and her number of falls increased dramtically.

    In 2010 we decided our current home (master bedroom on 2nd floor, no handicapped bath) was not safe for her and we made plans to have a new home built with the master bedroom & attached handicapped bath on the first floor. No more steps for her to negotiate in the house.

    In Feb of 2012 we moved into our new house and it was a great improvement for Susan. But as is the nature of the disease, Susan’s condition continued to decline. Her falls increased and she accumulated broken bones, stiches and staples . But at least the ER was on the next street. They knew us by sight. We upgraded to better walkers and then eventually a Step Walker in which the brakes are engaged by default and you must squeeze the handles to release them.

    I am fortunate that I work out of an office in my home, but do work fulltime and have a demanding job as an IT Security Manager for a very large, global company. As a result, I cannot be a real caregiver, work full-time, and do the required (albeit not all too frequent) travel. So in Jan of 2013 we decided to get in-home caregivers during the 8-5 hours to provide Susan with the personal care she needed. Initially they were extremely helpful, but as the months wore on and Susan’s condition worsened, the increased burden began wearing on both the caregivers and Susan.

    In Feb of 2014 Susan moved to a well-respected, nearby assisted living facility. It was a huge change for Susan and it certainly worsened her depression. But – her falls were reduced significantly and she had 24×7 care – although the responsiveness could be much improved.

    For an number of reasons, Susan has become extremely unhappy at the current home and as a result we’ve put her name on a waiting list of a family-owned group house, also close to home. The ratio of residents to caregivers is much higher, has more of a home-like atmosphere and the residents & staff all seem very close. Susan is looking forward to moving, but according to the owner they will not likely have a vacancy until approximately Jan 2015.

    Susan was a very smart, independent business professional and for her to give up control has been extremely difficult. She has a laptop, an iPhone and iPad to stay linked-in, but they are getting increasingly difficult for her to operate. She is confined to a wheelchair and speaks with a soft, halting voice that is difficult to understand. There are also some cognitive issues. This Thursday, Oct 9th is her 56th birthday and we’re taking her out for dinner. I hope things go well as she is become uncomfortable leaving her surroundings.

    At the end of John’s story about wife Patricia I spotted & stared at the last section. I have uttered those exact words more time than I can remember. I would not wish this disease on my worst enemy. No one should have to suffer like this!

    #1315

    Debbie Templeton

    Morning Leonard,
    I am truly saddened to hear that your wife is now in a home:( It is a truly destructive devastating disease! My hubby 43 was diagnosed in May this year… His progression so far has been very quick, he is no longer allowed to work or drive… I own and operate my own business in the fast food industry and operate 7 days a week, we also live on site. I also have 2 teenage sons, so life was very challenging already, and MSA well what can I say, it has truly just wiped us out… I honestly feel that I am just keeping my nose out of the water while treading like mad! As Ian is still mobile on his own for now, but has to be careful especially on uneven ground, we are trying to travel a bit. That was a rude slap in the face only last month, we went to the Gold Coast to the theme parks which he loves and used to go for days with my boys no stop on the rides! 2 Rides and he was exhausted and in so much pain we had to leave, he went to sleep before we left the car park:(
    Anyway please don’t ever feel your alone because unfortunately there are a lot of people out there with MSA and everyone is happy to talk at anytime. Please send me your email and contact info, if you like, and your wife’s also as she may benefit from some chats with others! My e mail is Debbie.b102@hotmail.com
    Cheers

    #1316

    Helen

    I haven’t seen anyone mention symptoms such as extreme paranoia and hallucinations. My mother in law was recently diagnosed after initially being diagnosed having Parkinson’s almost 3 years ago. She’s been on Levodopa and Carbidopa. Has anyone who has MSA been prescribed these medications? Is anyone experiencing these side effects mentioned? What medical treatments are being used if not these meds? Any info would be greatly appreciated. Thank You

    #1317

    julie johnson

    From what I understand it is those medications that cause the hallucinations. My dad was on those meds to rule out Parkinson’s.

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