Newly diagnosed aged 46 , single parent of two


#1
Hi all

I am so glad to find this place. I am a newly diagnosed mum of 2 young children. I work for myself from home.

I have been seeing a neuro consultant for 2 years as I had a lot of tremors in my hands. He held off sending me for a DAT scan for a while as I didnt have many other definite symptoms. But I had a recent DAT scan which he said along with some subtle symptoms he said made the diagnosis of PD definite

I was shocked as I have a female family history of essential tremor so was really expecting this diagnosis.

I am still trying to take it in in my situation of being a single parent and living far from family. I do have a difficult decision long term to make of whether to move closer to family and far from father of children or what to do.

I really do appreciate the information and support available here.

#2
Summerskyefirstly hello and welcome to the forum. Hard to know what to say to you, it certainly is going to be a hard choice for you to make. I think you do need to be nearer to your family and friends and have their love and support. It is going to be a tough call to make and sadly only you can make it.

How old are your children? Can you talk with their Father?

Wish I could be of more help to you, you will be in my thought and prayers.

All the very best to you

Radz xx

#3
Hi Summersky

Think the key here is just to take time to get used to diagnosis and let mind run amock for a while, then take one step at a time. Think about your choices but wait before making any drastic changes. You never know, you may be lucky enough to not to for a long time yet :smile:

Best wishes

Diane

#4
Hi Summerskye
I felt lost when dx last year ,but some of the best advice I was given was dont rush into anything.
This time next year things wont seem as awful. I carnt add much to Diane and Radz wise words.
My 10 yr old daughter Milli is my driving force,as Im your children will be to you

All the best Adrian

#5
Hi, Summerskye, a very warm welcome to you.

My personal opinion is that you should return to your family and friends as soon as possible.

PD is notoriously unpredictable, and you're hopefully going to remain fine for many years yet, but it's generally accepted that the greater the stress, the more rapid the decline. If you don't move fairly soon the decision will hang over you like the Sword of Damocles, adding to your worries. And the later you move (which you'll probably have to do anyway, eventually), the more difficult a task it will become. For example, what would happen if you deteriorated to the point where your consultant had no choice but to recommend that the DVLA rescind your driving licence?

Sorry to be all doom and gloom, but if you consider all the potential pitfalls now, and have at least thought about them, the stress will be considerably diminished.

Don't worry about the father. If he wants to be near the children he too will have decisions to make, but they're HIS decisions, not YOURS - you've got enough on your plate. Besides you presumably have no guarantee that he will stay put forever; he could move away himself at a moment's notice, leaving you right up there without a paddle.

I wish you all good fortune. Please keep us updated on progress.

RoS.

xxx
.

#6
Hi Summerskye and welcome to the forum.

As much as we can all give you our thoughts on the situation you are in, one thing is certain, the choice of what you eventually decide to do is yours. Involve your children, talk to them because your decision is going to affect them too and I'm sure they will have their own concerns. No doubt you have already thought of this however I have often found that kids can help put things into perspective.

Whatever else you do, please take time to look at the support you may already have where you are now. Perhaps the decision to move can be delayed until you have had time to take on board and come to terms with your diagnosis. That is enough to deal with at any one time.

I truly hope you will keep posting. You will find a lot of genuinely lovely people on the forum who will be able to give you the benefit of their own experience, support when you need it and an understanding of what you are going through.

My best wishes to you and your children, I'm sure between you will find the way forward.

#7
Hi Summerskye.
Welcome to the forum.

I too am a single parent....I was diagnosed in February 2007 at the age of 44 years, when my son was 12. I too lived (and still do) a long way from my family (about 100 miles). I can honestly say that when I was diagnosed, I never even thought about moving back to where I come from (where my parents lived). In any case, although both my parents were still around then, sadly they have both passed away since my diagnosis. I only have one sister, who still lives near where my parents lived, but she and I are not particularly close, and over the years I have lost touch with most of my friends from there. I also had (and still have) my job to consider.

You don’t say how old your children are but you need to think carefully before uprooting them and making them change schools etc. You also need to think about their ongoing contact with their dad....from their point of view as well as his. My son has always spent alternate weekends at his dad’s, which I believe is important for both of them, as well as giving me valuable time to myself. And don’t forget to ask your children how they would feel about moving....no matter how young they may be, I’m sure that they will have their own opinions on that!
I disagree with Ray of Sunshine’s view that you will “probably have to move eventually”. You are an independent woman of 46 and you have only just been diagnosed.....you have no idea yet how your PD will progress - none of us do - but I think it would be a bit of a “knee-jerk reaction” to go running to your parents / family now. Besides, you don’t say how old your parents are or what their state of health is....I know it sounds harsh but you may not be able to rely on them for long. (I know this from personal experience, as I said before).

I would also like to comment on Ray’s advice re driving. I don’t drive and never have done, and my son and I manage fine....we use buses, trains, taxis, and walking! I think that, apart from the walking being good exercise for both of us (which I believe has helped a lot with my PD), having to rely on public transport has made my son (who is now 16) more independent and resourceful than most teenagers who are driven everywhere! So please don’t think that your life will be over if / when you have to stop driving.

Of course the decision about whether to move or not has to be your decision and yours alone, but my advice is not to make any hasty decisions (or assumptions re how things will progress)....just give yourself time to come to terms with your diagnosis, while relying on whatever childcare arrangements you have at the moment, and see how it goes.

I appreciate that it may be more difficult for you than it was for me (I am assuming from what you have said that your kids are younger than my son was when I was diagnosed - and there are two of them!) but I’m sure you have friends nearby who can help, and you and your ex can continue with your current contact arrangements, or maybe you could adapt these arrangements to suit, if necessary.
If, at the end of the day, you decide that to move back to be near your family is the best thing for you to do, then go for it. But just make sure that it’s what you really want. Several people have commented on how well I cope with my PD, and I am sure that is because, as a single parent, I have to keep going for my son’s sake. And as a single person, I had no choice but to carry on and make the best of things when I was diagnosed....I didn’t have the luxury of a partner to look after me! Which on reflection was a good thing, I think, because I was forced to get on with my life even when I didn’t feel like it, and that attitude has now become almost second nature to me.

Anyway, you never know what (or who) is around the corner....you may not be single forever! I have had a couple of relationships since my diagnosis which unfortunately didn’t work out, but I haven’t given up hope yet! And I’m sure that you will meet someone eventually too.

In the meantime, it’s good to “meet” another single person / single parent on this forum! I hope you will continue to post on here, and please feel free to contact me privately if you would like any further advice or if you just fancy a chat anytime.

I hope everything works out for you, whatever you decide to do.
Take care.

Kathy :smile:

#8
Hi summersky ,I also had a tremor develop first, and because my father had an essential tremor off i went to see the neuro fully expecting to be dxn with the same, but to be told it was in fact PD was a kick in the teeth, but i will say one thing your PD wont get worse over night yove got plenty of time to make, what is, a major decision. I imagine a family close by would be of great comfort but theres no need to rush into it, good luck , parkypete

#9
Thank you for your warmth and wisdom

My children are young -7 and 5 so I am not going to tell them anything yet about my diagnosis. I will tell them when they are a bit older.

Good to meet another single parent - I do very much take your points about having to get on with it and also the independence of the children.

I feel almost back to when my husband left (very traumatic and shocking)- at that time too I was advised to not make any quick decisions. All the stuff I have learnt about acceptance, dealing with adversity etc I think will help me in this situation too.

I had already thought and you are all really realistic about what moving near to family would mean. To be realistic I dont think my parents would be able to support me in say ten years time -certainly not my father. It would more be other relatives several of which will also be older year by year too.

I do have a lot on my plate though as one of my children has special needs so I have to take all these things into account.

I will keep posting thanks. I feel it very useful to have this support as I am wary of telling a lot of people in real life. I will gradually but its great to have a safe place :)

#10
Hi again!

Well I confess I chuckled there for a moment when I mis-read your reply as giving your children's ages as minus seven and five, LOL.

I think you got a good cross section there, and the wide range of opinions and experiences between say, Kathy C and me - both legitimately held - demonstrates that there is no right or wrong answer. One makes what one hopes is the best decision at the time and prays that it works out.

In my own case I was dx at 50, and I'm now 61. My deterioration has been pretty rapid I guess, which I put down to various stressful events since then: divorce, financial problems, enforced early retirement, family deaths, etc. I was lucky enough to re-marry 7 years ago, and I'm now totally dependent on my wonderful spouse. If I were alone I'd have no option but to move into a home.

At the other end of the spectrum we have a guy in here who was dx at the age of EIGHT, who is now in his forties and still working and travelling the world. As I say, everyone is totally different, so the more people's experiences you can absorb the better.

Whichever route you decide to take, you can be sure that you do so with the love of all of us here behind you.

RoS.

#11
Hi
i have two young children one with special needs. one positive thing i have got from PD is more empathy and understanding of his situation (not that i dont sometimes run out of patience or that you need more empathy!).
i havent told my children about pd - one wouldnt understand and the other is working it out from all the pills, seeing me use this site etc. i prefer that to the direct approach.
the only advice i have is not to make any hasty decisions.
good luck
T

#12
Hi All,

Just thought I'd take the opportunity to say: Isn't the Forum bl..... marvellous!!! Where else would you get instant advice, feedback, information and support.

Best wishes to all

#13
welcome summerskye.
firstly in my experience children bounce and my daughter has always been very relieved to have known the truth from the start. it means she was always able to pre-empt any problem because she will be armed with the truth as opposed to the myths that surround PD.
Family and friends are good, in fact they are invaluable. Family knows you better than anybody else and believe me there are times when only family will do. The more prepared you are the less likely you are to end up in a mess. This is not meant to be doom and gloom but rather experience talking.
Your children will be the thing that gets you through: consequently the more they know about PD, the less shocked they will be. Knowledge is powerful in the playground for children, ignorance is not.in
basically carry on as before: enjoy life, today is what we have.

#14
Hi

I have been diagnosed nearly nine years and although I take medication, I find that hard exercise is the best treatment for our condition. I go to a Posture and Stretching claas every Monday, go to the gym on a Sunday, Tuesday and Thursday (jnot long back from tonight's session and go cycling on a Saturday. I am determined to beat this thing and i would recommend exercise to you - I'm sure with being a single parent you will be very busy - but if you can manage some concentrated exercoise time, you will see the difference. In addition, there has been research that suggests exercise can slowq down the progress of the disease

Good Luck

#15
Hi Forgatt
do you have problems with tendonitis after exercising? if so do you have any way of avoiding it or treating it?

#16
Hi Turnip

Yes I do - am currently sufferring from a bad bout with my Achilles Tendon - ice packs and griting my teeth (No seriously) the ince packs do help. Also if an area of "tendons" does bother me, I concentrate on other parts of the body and rest that area. I never stop going to the gym - it is how I'm going to win this battle!

You may be interested in the current sessins I am having in Physio - he has told me that I favour my left (Parkibson's) side so I need to strengthen my right leg (he assures me that my muscles on my right leg and gluts are smaller than my left - which surprised me as I have been doing additional leg exercises on my left leg which I presumed woud need it> I'm learning to walk with less leaning to the left (I was unaware of doing so) which has been puting strain on my right AT. I mentoned I thought I was getting arthritis in my knees but he checked them out said no they are fine - the pai I am getting is tendon pain so once I sort out my walking style my knees will sort themselves out. I am currently using the bike in the gym rather than the treadmill

Take care

Bob

#17
very interesting indeed
before i was diagosed i couldnt walk up the stairs due to tendonitis, i went to physio and made great progress, i think i need to go again. I feel inspired to attack some of these problems instead of accepting them. Fortunately i am working at a uni that does a lot of sports science - i am sure i can find someone to help.
Into battle once again!
cheers
T

#18
Hi summerskye,

All I can say is being a single parent myself to 4 children 22, 12, 10 and 9 (eldest left home now) is its blooming hard but you get on with it.
Im on my own no family their dad died and when I was diagnosed my world fell apart but gradually I pulled it together and so will you an your Children when you tell them.
My brood didnt really bat an eyelid they do some small chores but I have to moan and moan before they help because Im tired a little more now but thats about it.
I would stay where you are its much more important for your Children to have their Dad around for your sake too. Speak with your ex and ask for some extra help when needed and get in touch with some charity groups
Good luck honey and remember your not alone xx