O.Chat > Disabilities - Friends and Family
For the last seventeen years, our family has been dealing with a husband/father that has suffered through numerous life threathening health issues. He continues to struggle and to keep on going on.
For every person that keeps going, there is a spouse/partner, children, and extended family/friends that endure the struggles with them. I beleive that these are the unsung heros.
It is hard for me to share and even talk about the struggles that I go through without tears, because I keep telling myself that I can't be sick, I can't give up, I must be postive. It is only important that my husband continues.
I feel that my children, who are now adults with young children, are missing out on the life they should have becuase my husband is sick. So I tend to keep some of the problems/difficulities to myself.
So as we talk about those with disability, let's not forget those must be the caregivers.
Zanie
Zanie:
You are 100% correct about the caregivers as the unsung heroes.
I have seen it within my own family and friends.
Thank you for sharing.
jerseygirl
Zanie,
We are beginning the process of trying to sort out eventual caregiving of our sister with PPMS ( I wrote a few entries about her on the Racial and Cultural Differences thread - and will post them here at some point).
She has 2 children ages 17 and 14 who are having a hard time.
I've been giving thought to this situation, and it really does sap my energy. I can't even begin to imagine its effect on the person with the disability. I know with my sister, her disease IS her life, who she is, her future, and her reality. I am going to see her in a few days with my husband, who is an architect. We have to help her face the renovation of her home so she can better accommodate her disability.
I find it hard to formulate thoughts. I have not wrapped my head around what this means. My sister can no longer talk for any length of time without breaking down. It puts any garbage I think I deal with in my life in perspective.
In Hebrew there is a phrase "Ha Bri-oot, Ha Eekar" In essence, "health is everything".
Bevi
I sometimes think it is hardest on the children/teens. They have to face realities that adults fear. Our daughters were 16 and 18 when our odyssey began. Still in high school, they helped to drive Dad to doctor’s appointments and prepare food for him. Through the years, each one has stepped up to the plate and assisted when I have been nearly destroyed by the day to day issues.
Bevi, although your thoughts may be muddled and you find it hard to be articulate, remember to keep listening to your sister. She will repeat and repeat, but for her mental and physical health this is necessary. By the way, we do it, too.
May God bless you.
Zanie
These posts are moving me nearly to tears.
I have participated in caring for a loved one with MS and watching the decline that it brought. I rarely think about it now as it was such a difficult and profoundly painful time.
But this is a disease that is different with each person. I also have a friend from my college days who has battled MS, with some success, for the last twenty years. Throughout, he has strived to remain positive and has followed an extremely strict nutritional regimen devised based upon his own research. This approach seems to have worked pretty well for him. He does have debilitating attacks and I can see that the disease is slowly making inroads (decreased mobility, weakness, etc)-- but he remains functional and he and I are working together on an educational project, as his strength permits. He is an inspiration to me and I am often humbled by his positive attitude and interest in creating, thinking and sharing despite the effort required just to get around. It helps me to keep my own perspective positive.
I wish strength to all of you here who struggle as caregivers and friends of those with serious illnesses. It is one of those terrible trials in life. You can only do as much as you can do.
aurora
Hi Willow,
I have read your comments that mention you suffer with CFS. You probably are already aware of this...but, I thought I would send it just in case. I have a friend (more of an acquaintance) that has CFS. In addition to her MD's she also has a nutritionist and herbalist. Her MD also put her on an anti-anxiety/depressant drug. She seems to be doing a little better. Just trying to help!
ann#1
Hello Everyone
I've been reading and enjoying MrsO for a few months now - more an admirer than a lurker, I hope! At long last I've overcome my hesitation and had the courage to join the conversation by the startup of this thread, because it's disability in general - and MS in particular - that first sparked a more personal interest for me in Michelle Obama. I am an English woman with Primary Progressive MS, and have been interested in Michelle's own experience of her father's MS and how she's talked about that. Her words have been a source of encouragement and strength for me.
Oh, and I also love her sense of style and the way she embraces fashion as one of the joys of life. MS has certainly changed the way I dress (as well as lots of other things) - no more high heels &c - but it has also given insight into other people's situations and challenges which I know I would not have gained otherwise. I know it sounds presumptuous, but I sense that her own experience of MS has also shaped Michelle's approach to life. And I value that.
MrsL
Hi MrsL,
As you may have read earlier in this thread, I have a sister with PPMS. I would be curious, if you do not mind sharing, about your diagnosis, how you cope with your illness, any support you have, and your general outlook.
If you do not feel like sharing, I understand. I have checked out websites, etc., but have not had the opportunity to engage in discussion personally with a person who has this disease, other than my sister. She has a very hard time discussing this.
Bevi
Bevi
Hi Bevi
Yes, of course - in fact, talking about my MS has become an important coping strategy for me, although that was far from easy at first ... When I was diagnosed with PPMS in 1996 (then aged 36), I found it very hard to discuss my condition and its implications with family, friends or colleagues. With hindsight, I was very conflicted - torn between denial and a desire to keep up appearances - and I certainly did not wanting to appear 'disabled' in professional or social situations. But as my disease has progressed, I have increasingly accepted that there is no such thing as 'normal' - and now I am pleased to explain to people who see me with my walking stick or electric scooter (buggy) what 'is the matter with me'. Sure, I get angry and frustrated, but these are, I think, outweighed by my feeling that I've learned so much from having to deal with this and that's made me more compassionate (I hope) towards others.
As you will know, everyone's MS is different. That's one of the biggest challenges for people who have the disease, their carers and medical researchers. Here in the UK, there is research on how well (or not) MS is understood by people who have no direct experience of it - and not surprisingly, there is a lot of confusion because the symptoms can be do diverse. This can make MS people feel very isolated, I think - and none of us know what the future holds.
Your sister is so blessed to have you as such a loving and caring sibling - not to mention the wonderful resource of an architect brother-in-law! Does she also have good medical care?
In the UK, there are no drug therapies available for someone with my degree of PPMS, so I really focus on self management - diet, gentle exerciese, rest and knowing when to say 'no' because I am too exhausted. My primary symptoms are impaired mobility, loss of balance, spasticity, muscle weakness and fatigue - I am lucky! I find that reflexology is wonderful for my swollen and useless feet, and swimming is the best exericse, combined with very gentle pilates. I do also believe in the importance of targeted physiotherapy. One thing I regret is that I didnt have counselling when I was first diagnosed: it wasn't offered and it didn't occur to me to ask for it. But I really do feel that it can be a valuable tool and support for someone coping with the emotional, practical and physical challenges of diagnosis.
Everyone who has posted here to recognise the immense contribution of carers is absolutely right - you are indeed the unsung heroes. Having MS has certainly put strains on my marriage, but my husband has been a wonderful support. Aurora is right too: carers can only do as much as they can do. I know that when someone's needs are immense, that can be difficult to accept. My husband and I have been working on this for over a decade - it's still a work in progress and I expect it always will be.
Meanwhile, Bevi, you are obviously doing so much for your sister, whom you care for with such love and concern. My heart goes out to you with warmth and admiration.
MrsL
MrsL,
Thank you so much for your honest and open response.
I want to pick your brain on diet. What do you eat and what are you advised to avoid?
Also, what accommodations to your living quarters did you make that were not obvious? We need to consider lowering counters, widening doorways, providing either an elevator or downstairs bedroom and full bath, rails - but is there some adjustment that you find particularly helpful that I am overlooking? My husband is very familiar with regulations, but from the side of the person who uses the renovations, what do you think?
My sister has excellent health care, but does not qualify for long term care because she was diagnosed prior to applying for it. However, she and her husband have good resources. She has all the symptoms you mentioned; her eyesight is the only improvement since she started on Tysabri.
Again, thanks for your thoughts.
Bevi
Bevi
Hello again Bevi
Wow – it sounds as though you and your husband have all the bases covered regarding house modifications. For me, it’s really important that my house is my refuge – the place where I don’t accidentally trip up, lose my balance or get tired out just moving around. Small things make all the difference: well-positioned, solid furniture to hold on to if I need to steady myself; no rugs to trip over; and lovely baskets to hand for carrying stuff around more easily. We have 4 bathrooms in our house which may seem excessive for two people (at least, by British standards) but they’re very useful when you need one in a hurry. It might also be a question of training other people – eg not to leave their shoes where I would fall over them! Just as my collection of flat shoes has grown since I’ve abandoned heels, I’ve also embraced the minimal aesthetic as both the safest and most soothing environment for me.
I am no paragon regarding diet, and I don’t follow any of the more rigorous MS diets (eg Swank or Best Bet) – tho’ many people find they really help. But I do not eat red meat, wheat or dairy, and I try to eat very little sugar (apart from fruit). These foods make me tired and hot. I feel best on a diet of fish and vegetables, with carbs like rice and potatoes. Again, it’s personal: I like soya milk but some MS people avoid it. I do take supplements to boost my intake of Omega 3 and 6 essential fatty acids, and also Vitamin D (there isn’t much sunshine here in the north of England… ((((-: ).
The MS Trust has a good overview of MS and diet issues/research/advice here:
http://www.mstrust.org.uk/information/publications/factsheets/diet.jsp#ms
I do think it’s worth experimenting a little with diet and MS – just to see if cutting back on some foods makes you feel better / more stable. Equally, food is one of the joys of life: it enriches us in so many ways, as you and the others on the foodie post demonstrate. If people who are not feeling well can still take pleasure in all the sensations and sociability of eating with others, that’s a restorative in itself. I guess that’s why I am not as strict as maybe I should be… but as my mother would say “a little of what you fancy does you good”.
And thanks for prompting me to reflect on these things....
MrsL
MrsL
My closest aunt and a good friend had MS so I have a limited acquaintance with the illness. It's a long hard struggle with both physical and emotional issues. My aunt was divorced by two husbands while diagnosed with it (a fact I can understand but also find appalling), and lost her daughter to motor neurone (or Lou Gehrig's) disease, which must have exacerbated the situation. Notwithstanding that, she resisted it with every fibre of her being. I can't recommend it but she fought it every step of the way with rage. To me, MrsL's approach seems far better, but then we all have our different approaches - I suspect mine might edge towards the rage side of things if I had to deal with it. The friend had great difficulty with her employer. They kept trying to get rid of her on performance related claims (so that they wouldn't have to pay insurance), but she kept going back to tribunals and proving that she did her job brilliantly so the company have had to back off.
Mrs L - thank you for your frank and inspiring comments on your illness and MS in general. I wonder if you haven't missed your vocation as an educator and ambassador in this area. You express yourself beautifully and the information is valuable for those not in the know.
***
Going back to CFS - I had chronic fatigue syndrome for many years, probably since I was in my late teens but it got really out of hand in my mid twenties. I was diagnosed after two years of collapses and varying degrees of immobility, and recovered over a period of three years. By the time I was 31, thanks to a homeopath GP, I was functioning pretty normally. It was exacerbated by undiagnosed hyperglycaemia and once that was under control, the ME/CFS receded bit by bit. I get the occasional wobbly day/week, but self management is the key. Diet mostly, and regular gentle exercise, avoiding excessive caffeine, sugar and alcohol, and steering clear of some bread products. They seem to tip my body's balance over and then the depression and exhaustion can creep in. If I steer clear of those, then I can usually stay as active as I like. It's important for me to admit when I am tired and ask for help. Which I find really hard, but if I push it, I just get worse so it's best to be honest at the beginning! Largely, I've been clear of episodes for ten years.
Although MrsL is speaking about MS and I only come from the CFS side of things, I agree wholeheartedly with the "a little of what you fancy does you good". My grandmother used to say that and although "a little" in her case was usually the entire packet, I think if you ignore what the body is asking for, it's probably a mistake. If I get a yearning for something, I'll have it. No point in driving yourself nuts for the lack of a bit of cake or a peanut butter sandwich of whatever it is.
Posh Tater
Thank you so much, Posh Tater, for your warm response - and for these invaluable words of wisdom. Your comment about 'being hoest at the beginning' really strikes a chord for me: I think I am getting better at this, but I need to work at it. And your lucid expression of this is something I am going to hold on to over the weekend - and beyond.
Your post is also an important reminder that even though we may each be facing different challenges - CFS, MS &c - we have so much in common: we need to take time to understand our bodies and to care for ourselves, as well as for others.
MrsL
MrsL
I posted above about my friend who is struggling so valiantly with MS. Afterward, I realized that I had never shared with him how inspiring he is to me – perhaps because he rarely talks at any length about his disease. Still, I decided I would do so in our next conversation. As I began to express this to him, he deflected the praise, saying that he is always mindful of the huge challenges that so many others face and finds himself unremarkable in that context.
But I persisted in pointing to his great enthusiasm for life, learning and teaching despite increasing physical limitations. Finally, he quoted Nietzsche: “He who has a why to live can bear with almost any how.”
Every person and every situation is different, but I offer that sustaining thought here for those who may find meaning in it.
aurora
Of which I think there will be quite a few. Thank you aurora. I'm looking at that phrase right now and having a few cogent thoughts myself.....
(MrsL, you're very welcome. And you know, being kind to onesself..... how many of us forget to do that?)
Posh Tater
Here's a disturbing reminder of how disabled children are treated in our schools.
Students with Disabilities More Likely to Face Physical Punishment in School
Willow
While here in Balto I have had some interesting conversations with my sister. When she was getting her treatment, another patient turned to her and said, "You look like you have hope. I once had hope, too."
I am trying to encourage her to join a group of PPMS patients. She does not think there are many out there who fit her profile of a woman who is trying to stay active, with children still in the house. I tried to do the math - if there are 2 million MS patients in the States, and 10% of them have PPMS, then there are 200,000 who suffer from PPMS. In the DC/Balto area there must be at least a few thousand. Of those, surely some must be in their mid-fifties with children.
I am trying to grab at some way to encourage her to talk with others.
Any of you have any ideas?
Bevi
Bevi,
After reading your post this morning, I spoke to my friend about whether he had ever participated in a support group. He had not but mentioned that online chat and message boards dedicated to MS attract a wide variety of MS suffers and that there is a great deal of sharing and advice.
I searched it and came up with: http://MSworld.org/html/chat.htm. There are others as well. You may want to take a look. Perhaps it is a way to pique your sister's interest in interaction. In that format she can lurk, take her time and decide if she wants to participate. It may be a step toward joining a group in her local area or it may be helpful on its own. Just a thought.
aurora
Thank you Aurora,
That is a really helpful and great idea.
I truly appreciate you writing back. Bless You.
Bevi
And may I add, that as with most things, it will also be useful for your sister's husband to talk to other husband's in the same position - and for the children. Dealing with a terminal illness can be isolating and alienating for ALL family members and to find someone who gets it - even if they are on the other side of the country and only online - might be useful for them too. And if she really won't look at that site, but they do, then they'll probably pick up useful information that might help her later or might help them deal with certain situations later. So it's all good.
Posh Tater
Bevi, I am really pleased that you posted. I've been thinking about you and wondering how your visit to your sister is going, so it's good to hear from you. I completely agree with the wise suggestions of Aurora and Posh - makes absolute sense to me.
Hope you're managing to find a few moments to take care of yourself too.
MrsL
Amen to that. xx
Posh Tater
My sister called me late last night (We are back in VT with our "kids" ages 28 and 24). She told me that she was in a chat room that was dedicated to the effects of Tysabri, which she is taking.
So the good news is I think she is using the internet to connect with groups and people. The bad news is she had a doctor's appt. while we were there - her walking has gotten worse, and she was told it will not get better. She stays active with physical therapy, working with a gym trainer, and water therapy. The sad thing is with all she does, the disease marches on.
We had a gloss-over of house renovations, but there was no real movement on that on their part.
I have noticed that my mother is having a hard time coping with this. Her health is really deteriorating - she broke her hip over a year ago, and recently fell out of bed and has compression fractures as a result.
I am well - we are having a great time with our kids - we always do - and I am relishing that time.
Bevi
Bevi, welcome back! It's great that your sister is using the internet to connect with people. Who knows what resources she'll find - human, emotional or practical. That's just fantastic.
Be kind to yourself.
Posh Tater
All:
This is a thread where we can be able to discuss the important topic of disabilities.
This hits home for me as I have a girlfriend who has MS. She is still mobile and gets around as well. She has stated that she will not go down with a fight. It is difficult for her, but she keeps going. She has retired but decided to work a part-time job. Her husband has Parkinson’s.
To look at her, you would think that she was in perfect health. She is not, nor is her husband. He is beginning to show signs of his Parkinson’s.
I also have an uncle who had his right leg amputated below the knee. It was a long recovery (a year in the hospital followed with intensive physical therapy). He was in a car accident. He still works and drive (the family does not understand how he does it as it was his right leg that was amputated) himself wherever he wants to go. He even drives long distance.
Do you have any family members with disabilities? If so, how are they able to cope in a world that is designed for people with no or limited disabilities?