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Multiple System Atrophy Trust
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What is considered the latter stages of MSA?

Hi my name is Kelly! I have been caring for my Mother for over a year now who was first diagnosed with Parkinson's in Aug 2015 but then rediagnosed with MSA January 2017. She has really went down hill fast. She is strickened to a wheelchair and has no balance what so ever which makes is very hard for me to get her to the portable potty, in and out of her hospital bed. She is currently taking Amantadine 3 times a day. I am caring for her by myself because no one else can handle her, my dad use to take her on the weekends to give me a break but he passed unexpectedly in April from a heart disease that we had no clue about; fortunately he went peacefully in his sleep. My dad was my saving grace with my mom because of all of his help. I get really overwhelmed psychologically and have breakdowns for which I really need to seek counseling for. I never wanted to be a nurse because I have weaknesses to certain things when it comes to caring for someone, I have had to do unimaginable things for my mom for which I cry the whole time I am going through it. I try to put her feelings first like what she is going through which is way worse than what I am going through. This whole thing is awful and I can't believe that the health insurance and Medicare that she has will not cover a health aid or nurse unless she is undergoing therapy of some sort, which we did do but they discontinued it because they said it wasn't helping her which is true. She is getting weaker and weaker. She has had a tracheotomy for over 3 yrs now due to paralysis of the larynx. She had a car accident in 1998 which resulted in head trauma and is why she has MSA we think. Some days I go to my room and just cry and wonder why, why, why??????? Then I take out my "Everyday is Friday", book by Joel Olsteen and start reading which makes me feel so much better after. Recently she has started to choke on flem and mucus which I then get the suction machine out and get her cleaned out. She is still able to eat and swallow solid food which is good. Her treat of the week is a Mocha Frappe from McDonalds but is also harmful because anything dairy isn't good for her trach because it builds up the flem. But who am I to keep her from what she wants, I don't know how much time she has left and I be darn if I am going to keep her from what she enjoys. I really would love to get one of those bicycles with the carriage thing on the front so that I could take her riding around at various parks and stuff, she would love that. So this is our life and any tips or advice would be so much appreciated. Thank you for reading! Kelly

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Kelly, hello.

It is so brave of you to write what you have. I think many of us soldier on trying not to think of the massive physical and mental cost that caring for someone with this disease demands, but it is a huge burden and there are times when hanging on to my sanity is very very difficult.

Caring for someone alone is particularly difficult. In the UK most of the care required is deemed 'social care' and, as you have found there is no help available via insurance or the state.

I am fortunate enough to be able to afford a companion carer for my husband for 7/8 hours a week. Without it I would not be here, but there are still vast hours of struggle and loneliness.

I worry that I am not looking after my husband as well as I should be, while wondering where my life has has gone. I ricochet between resentment and guilt. John had his first chest infection a couple of weeks ago. He does not want a feeding tube, the next few months are going to be even more difficult.

The only way to get through it is to accept that we are human, we will not be perfect, we might behave badly at times, possibly upset others with non rational rants (speaking from experience!) but we will do it.

Very Best Wishes

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Hi. I am really interested in your companion/carer set up and wonder how you went through the thought process and then finding someone. There is nothing in Geoff's care that I cannot do but as things progress and more of my day is taken with it, I wonder what help I should access. We have been working all along at keeping things "normal" as in, same bed, regular routines, front load WAV, trying to do some standing transfers etc. and have really not wanted to have to fit into anyone else's schedule but the time will come...... and I am unsure what help I need and how to access it.

Geoff has just got a PEG and we are happy with it, and as he was unwell last week being able to get some nutrition and medications has been a real relief.

We are all just trying to do the best we can and some days it is fine and others it is all a bit much isn't it!

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Diane, hello.

The whole care thing is a nightmare. I gave up work 4 years ago to look after John. I had a very high powered and 'glamarous' job, and found the transition to carer very very difficult. We survived for a while with me not leaving John alone for any more than 2hours, then 1 hour to the point where he was terrified to be by himself at all. Throughout all this, he has not been really interested in going out himself very much (He was never very sociable). I was going crazy. Fortunately through a network of friends our carer came into our lives, and has kept both John and me sane. I can still manage John's morning and evening care myself, but Aneesh comes 3 or 4 times a week for 2/3 hours to sit with John, read to him, watch television and do whatever care is required. She brings him a change of scene, and I get some time to myself. There is no help from anywhere to access this type of care ( I pay £15:00 per hour). I just got lucky. You could try advertising in local papers etc or tap into the elderly care network locally. I will look after John at home to the end, but I also need to be a person and have some sort of life, not least so that I am not left in a wasteland at the end. Without Aneesh mentally i would already be a basket case.

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Hi. Thank you for you honest open comments. In a past career I was a physiotherapist so I have some advantages in moving to a carer role, although it is easy for it to be a job not a life. I did have to give up my job a year ago as Geoff couldn't do enough to look after himself or move around. Geoff now is fully dependant, although he sits in his wheelchair at meal times and for trips out, and in his recliner to read or watch TV which is really the extent of his social life, as his speech is quite poor so it is difficult to mix and have conversations! He has a PEG for medications and most of his nutrition, which I manage, but still likes his food in small portions, however that is now puree consistency and his drinks are thickened. All of which takes time to prepare and think of what we might like that is suitable, and his manual dexterity means that he needs feeding mostly. Most transfers are by hoist. All in all it is quite a demanding schedule but how to fit someone else into it is still difficult to get my head round. I can pop out for an hour once he is settled in the recliner but it isn't quite enough to do much. You obviously are very blessed with your helper and I am really glad that you have found a set up that works for you, and enables you to look to the future both in terms of John's care at home and your own life going forward. It helps when financially it can be afforded, as you say, there isn't funding for this kind of support, fortunately we would also be in a position to fund it. Well done you! That is where I aim to get to.

Thanks again.

Diane

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Thanks Diane, your life sounds exactly like mine at the moment. My Aunt fell through this weekend for my time with my husband but unfortunately she has back problems and is unable to do so. My Mom had a bad day today which also means I had a bad day as well. Things are really difficult for me and I don't understand why there isn't more assistance out there for MSA. I plan to contact hospice on Monday just to see what kind of support they can offer. Hang in there Dianem, it's really tough I know. Find something that you can turn to like a inspirational book or friend to turn to. It helps me when i am at my breaking point.

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Kelly, what a brave lady you are to post this and hopefully help will be on the way soon.

I have been looking after my wife who has recently been re-diagnosed as MSA.

We are lucky as Sue has a care package she is entitled to so carers get her up and visit her at home 3 times a day.

This was all sorted out for us using local support. If you haven't contact your local Neuronurse and ask for help. Use your GP. Contact social services. Ask for help do not be afraid.

We also get fantastic support from our local hospice who are linked to many professionals that can help. So just walk in and day HELP....

The phrase "can you help me" is powerful... And keep asking.

Also talk to MSA trust as the have so much help to offer both for sufferers and Carers. msatrust.org.uk

If you want to talk to someone directly go to a MSA meeting or askbthe trust or one of posters on her will gladly chat.

The first step in solving a problem is to realise it exists.

We are all here for you.

Paul and Sue

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Kelly, I just realised you are in the USA and a lot of support I spoke of is in the UK.

Look for MSA foundations or trusts in the states and ask for help.

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Hi Kelly. Well done for keeping on doing what your mum needs. As Paul mentioned many of us are in the U.K. And our support services are different. You can still access the MSA trust website and factsheets but there is a US organisation multiplesystematrophy.org/

I hope that if you haven't been in touch with them that you could do and they might have some relevant advice and help for you.

Everyone's MSA journey is different and gets tougher as it progresses. My husband isn't doing as well as he was and I am doing many of the nursing type of things that I wish I wasn't.

The Joel Olsteen book looks interesting, I hope your faith will support you through the tough times - you really have been having it hard.

Diane

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Hello Kelly

I can only repeat what others have said in how brave you are speaking out on this community. Hopefully you will find everyone kind and supportive and I am sure this could be a source of help and comfort to you.

We have only been involved with this community on HealthUnlocked for about six months but the number of people on the site has grown considerably. There are others from USA who may be able to give specific guidance.

In the meantime, rest assured you are welcome to rant and rave, probe and question or simply give an update on this site and we will be as supportive as we all can.

Take care, Ian

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You are doing your best my social worker has been good to me keep going your doing well x

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Hi Kelly.

First of all big hugs to you for what you are doing for your Mum.

Your initial question was What is considered the latter stages of MSA?

I believe because of the nature of MSA &what I have read on here everyones experience is different except for the common links of lack of balance, speech problems, incontinence issues.

I can only speak of my experience which was as a caring daughter to my dad who sadly passed away January of this year.

Towards the end of 2016 my dad was confined to his hospital bed with two carers 4 times a day. This was because the less movement my dad had he got heavier and could not help himself at all. The last movement to go was his fingers which was a turning point as it was infuriating for him. Up until then he took it all in his patient stride! He was struggling to hold his water bottle, control the bed, hold a pen or stylus. By Xmas his speech was pretty much gone, quite heart breaking to witness! By now my dad who had bn a hardworking manager, a good man, an intelligent man & of course a fab father was all the above still but stuck in a body that could not move or show emotion. Also at this point he was having chest infection after chest infection.

We had a lovely New Years day with family where he seemed to be enjoying himself but was very tired.

Exactly 1wk later he was on his 4th chest infection, unresponsive & we were told the devastating news that he had a few hours left!

We always knew the outcome was not good but we never expected it at that time. Still taken far too soon & I miss him so very much xxxx

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I'm so sorry about your dad. I just lost my dad too in April unexpectedly due to a heart condition we had no clue about. I miss him so very much, my daughters were devastated because of their closeness. I just continue to take it one day at a time caring for my mom, all I can do for myself is pray to the Lord for patience and he does grant me that for which I am grateful. Thank you for your response and sharing about your dad.

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Hi kelly, although you are as welcome on this MSA health unlocked website, it has move of a British point of view about it than a States point of view. I recommend that you look up Pam Bower on facebook whom seems to run "the MSA Coalition" in the States and has many fb pages for carers and suffer's. In answer to your quetion. My wife has the MSA and it also came about because of a bang on the head, or so we thought to start with. After seeing many movement neurologist's and after many different scans and doing much research, it appears that it is a degenerative desease that starts early in life with low blood preasure readings. Bladder issues and constipation issues, sleeping difficulties etc etc. It is only when the parkinsons type symtoms come out that we ask for help and the wrong parkinsons diagnosis. It is only when all the symptoms are taken into consideration that they get an MSA diagnosis. A bang on the head can "advance" the condition quite considerably, but without the bang on the head we were told that the MSA would still have come out anyway, only a bit later in life. How long a suffer lives for after the parkinsons symtoms start seems to depepend on to many veriables. As some live 1 month and some live 20 years. But without a doubt you mother seems to be as bad as my wife except that she uses a "cough assist" machine instead of having a track op. She also has a lot more meds as well. Talk to someone about useing carbasistine and fludrocortisone tabs. All the best Kevin

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Thanks so much Kevin to take the time to reply, I will definitely ask about these meds at her next appointment.

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I cared for my Mom when she lived with me and died of cancer in September 2013. Two months later my daughter got cancer but recovered. In 2015 I began to have symptoms of Parkinson's, and yesterday I was diagnosed with MSA. I know what it's like to care for your mom, you love her and detest her all at the same time. Please let me know how things are now. And please, please, find a way to be selfish and take care of yourself.

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that sounds like the advice of someone who knows what he/she is talking about. Instinct says do EVERYTHING all the time to care. Reason says Yes but keep looking to the future and see what more will be needed from you and try to keep a little strength in reserve for when you need it - and you will need it. Like all ood advice hard to follow

FredaE

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Even if your mother I's not eligible for medicaid if she doesn't have alot of money she may be eligible for long term medicaid . my husband has msa also and this pays for us to have aide and so much more if not hospice will help. Its not just for people dying of cancer. Hope you can get some help.

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