KeithH

Well done Kel. Thanks for posting this, it'll help others in knowing that it does get better.

Good Day Hannah Firstly hope you doing well with your course. Your dissertation, or research project, is probably the single most important assignment you will undertake whilst at university. A few more people like yourself would help the Stroke Service. It's obvious that you are keen to do this, as you've posted in many Stroke Forums However, as a long term Stroke Survivor, and Volunteer with my Local Stroke Service, I feel you will NOT get a true feed back from Professional Carers. Although, I class any Spouse, Full time Carer, or Family Member, as an unpaid Professional. They save the government Thousands of Pounds yearly. That's another issue!! A Professional Carer, as in those that supply this service as a profession. Either through Social Services, NHS or Private Source are governed by time scales and budgets. They spend only allocated time with the Stroke Survivor. In turn not getting, a full picture of the situation. Some, but not many, do specialize in Stroke Care, but they are few and far between. Some only know what they have been told we feel like, mind you most Doctors are the same. You will get a much truer outlook by using the Stroke Survivors Spouse, Full time Carer, or Family Member. As they will see the mood swings, the ups and downs. The frustration, the worry, the not knowing. These are only my views/opinions, but if you feel I may be of help, please contact me.

Interesting thread here!! I say that, because I've noticed a change in my sight over past year or so, GP say's it comes with age-if thats the case, why is my right eye OK--there the same age!!!!! NO SERIOUSLY, my Stroke Affected side is the side with medical problems. Yes it might be age related, but seems strange. Deaf in Left Ear, Left Eye a lot weaker than Right, Muscle waste in Left side. That's on top of the weaknees overall in left side of body. Yes a lot is to do with the Stroke, but why is my sight and hearing problems only on Stroke effected side??? Any one else, simular?? It's not until I sat down and thought about this, I've realised how much I've had to adapt to do everyday things. Silly things I used to take for granted, even down to washing and dressing. Think I'll wait a bit before going back to GP, got enough going on at the moment!!

Mary Well it seems you've had your fair share of BLIPS!!!! At least in here, you can vent your anger, frustration etc. Chin up hun, you'll get there. In a way your helping others, who are going through a simular situation, and are unaware what it's all about. A long time ago, I was told not to compare, as were all different. It helped me stop asking those what, why & when questions. Your own body wil tell you when it needs to rest, it's no point fighting it. You take things easy, ((((((((((((hug))))))))))))

Hi Sally and all other SAH Survivors. Please never feel guilty, everyone in there own way are helping others get through it. As most are aware, I've not had SAH, mine was almost, well lets put it this way, I wouldn't be here. For the first few months I just sat there, feeling sorry for myself, asking all those "why me", and "what if" questions. I'll never be able to go back to full or part time work, but I'm doing things I never ever dreamed of. I started Volunteering over 12 years ago, it help me, and I know I've helped many. I work along side our Stroke Team, offering Advocay & Empathy to Stroke Survivors, Carers & Family Members. That is something no one can find in books or leaflets. As everybody is different. It's great when a relative say thankyou, and a real boost when they say, why arn't Doctors so helpfull. Have a good look back at your past posts. Your wit and banter brightens many peoples days. Lets now sit back and wait for other comments.

Hi Vanessa I too would go with the Ginger Ale & Burnt DRY TOAST--I say dry, because it's the carbon on the toast that will help settle your stomache. There might be another cause of your Nausea!! I had problems with my medication, and found out that the mixing of certain medication at the same time will cause Nausea. I had a chat with the Pharmatoligist, who by moving the times I took my medication, help me with my Nausea. Might be worth looking into.

Hello Jean Think it's about time I added to this post. Most of you are aware, that I don't usually do Pills & Postions, for one reason. Your put on Anticonvulsant Drugs for a reason, at the time it's the most suited drug. They will change them, until they find one best suited for you. This could take a long time, or be sorted very quick. You've stated that you've been on Phenytoin, and now being taken of them. I was on them for 6 years, but had to take a much higher dosage, with regular blood test to determine the dosage. I too was taken of them, and at the time put on Levetiracetam (Keppra), It took over 2 year to get me off the Phenytoin, as it has to be done slowly. It was hard, massive ammount of mood swings etc, but worth it in the end. At first I was on a very high doseage of Levetiractem, and over the past 5 years, I'm down to a controlled doseage. It's the drug best suited for me. Over the past 3 years, I've reduced the doseage, and now settled. I was one of the first people to be givenLevetiracetam (Keppra) in East Yorkshire. To date I've been on 12 different sorts of Anticonvulsant Drugs. (I'm 14 years Post Stroke/Post Stroke Epilpsey) I was on 3 different tablets at the same time, it took them a year to realise, they were cancelling each other out! YES, taking them and not working. Think that was the worst I ever was. Up to 14 seizures a day--but hey ho, that was the past. Think I had my own Hospital Bed that year! Don't be scared of asking questions. Also don't read to much into the side effects, in fact don't read them, any noticable changes, give them a couple of days, then get back to GP. I'm more than willing to talk to you, if you want me to. Either PM or E-Mail me. Take care

Michelle It's now "Onwards & Upwards" Sit back and look how far you've come!! Set yourself your next lot of Goals, and aim straight for them.

Hi Nick Welcome to the Family. Hope you find the information on the site of great use. If it's "Advocacy & Empathy" your looking for, your in the right place. Some of those what seem daft questions, already have been asked in here, and if someone can't answer a question, they know someone who can. Looking forward to your future posts.

I also have met both Rod & Merrill, they graced me with a visit whilst on Holiday. My thoughts and prayers got out to Rod and his family. Thank you Paul for bringing this to the attention of those who know them, and fellow BTG Members.

Come on Donna Deep breaths, calm positive thoughts. Only natural to be a little scared. All these "What if's" are negatives, lets put them to bed. Glad Hubby has been keeping you busy!!! I've sent you loads of information about Stress & Panic Attacks etc. Don't forget there is a difference. Give them a quick read once again. Lots of words of encouragement, from others. You'll be fine No doubt you'll keep us updated

I'll add my comments to this one. I was always good at time keeping, appointments etc, but after my Stroke like many drastic things changed. Massive ammount of frustration came in, wondering why the every day things I used to be able to do, is now becoming harder to do!! But with time it got easier. Penny has already stated about getting into a routine. That I do all the time now, even as far as doing my medication, on a set day, at a set time. Lost count how many "Post-it-Notes" I've used. But if I done those to early, once I've read them back-they mean nothing, until after the event!!! Most of us has daily access to a computer/IPAD/Mobile Phone-theres and excellant Calendar programme, which you can set up, to give you as much pre-warning as you need--1 day before,2 days--or even on the day e-mails.--Yes I use this a lot. Once my appointments arrive, there logged in my computer, then added to diary and calender on wall. Honest Dawn & others, it does get easier, but a routine helps.

Great News Jess--onwards & upwards Take care

I've just read the link, so sad Michelle. I too would return to A&E, and ask for more to be done. I've already been labeled "An Over Protective Parent" So I use it!! Your not asking for anything your not intitled to.

Thank you for this thread. I've just priced up one for myself & Zoe. Can't believe the savings made by going direct. Like the Idea of the USB one, but that's an overseas site, would it be compatable in the UK ? (Might be over thinking on this one) Why do "Epilpsey & Diabetic Support Groups, maybe others also" put so much money on top?? After all, they must source them from somewhere!! Thanks for the savings

Da doo Ron Ron...da doo Ron Ron Was a hit for "The Crystals" also covered by "Shaun Cassidy" If I remember correctly "The Rolling Stones" also did a cover. I'll look it up later. Thanks for the memory jog!!!

What a cracking thread. Been thinking about this, and my 3 might suprise a lot of people. Luckly, I can listen to music, drink in moderation. I've never driven a car, or taken holidays overseas. As with my time in the Royal Air Force, I had working Holidays (I was single then) I've noticed a few have mentioned, that they miss the way they used to be. I DON'T-My Stroke has made me stronger, more independant, and taught me things I never even knew I could do. ADAPT, is the key word, also don't use NEGATIVES. I miss work--honest. I've been in catering in some form since the day I left school, right up to my Stroke. Yes, I still cook at home, think it a way of keeping me active. (Beside that, you can only take so many Anti-Acids!! Lez can't cook!) I really miss the pressure, the challange, doing something different each day. And with not working, I miss an income, that I was used to. Now the Government say how much I can live on!! (Wish they could show me!!) Now I'm a lot more carefull with money, as long as the bills are paid, food on the table, clothes on our bodies, anything else is a plus. Prior to my Stroke, I know now I dwindle it, wasted it. The main thing I really miss, is travelling. On my days off, I thought nothing of getting on a train or coach, and see were it stopped. Also visiting different Rugby Grounds, it was my way of unwinding. Really looking forward to reading future posts on this thread.

David I can only repeat what Lynne has said. Wishing you all the best for the future, stay positive. My thought and prayers are with you both. Lynne-That has to be one of the best replies I've read to a post in a long time.- Thank you

Louise congratulations on reaching 12 years. That must have taken some writting? I know your post will help many. I've said before, there is a light at the end of the tunnel, it's just that sometimes it takes longer for some. Your journey has had it's ups and downs, very simular to mine. Just get off the train for a few weeks, then get back on it. Your positive posts/comments/advise over the past have helped many, myself included. Onwards & Upwards Take care

John What you have achieved over the past two years, is excellent. Your positive attitude has no doubt helped many. Knowing when to take a break, is a massive plus. Your body knows when it needs a break!! Setting yourself a goal, is great. Once you reach it, move the posts!! Getting support from your employer, is great, many don't have that. I,like many wish you all the best for the future. Knowing that you are getting back-up from the Hospital, must also help. Well done John, looking forward to future post

Welcome Mags Glad you've found this site. It's an excellant source of Empathy & Advocacy. I'm sure you'll find the information and support you'll need on here. Knowing your not alone, also helps I'm originally from the IOW, and with my past job, I know Hayling Island very well. Sinah Warren & Lakeside, I used to visit a lot. Also the "Ferryboat" whilst awaiting the landing craft, to the other side. Hopefully a few other fellow southerners will pick up this post. Take care-looking forward to future posts

Zoe. I've been where Richard and many others are. Thinking your doing nothing wrong!! Neurophsycologists & Counselors helped me and my family through a very, very rough patch. Zoe, you really need to talk to someone. This service should have been offered you. you should be able to access the support at anytime. Either through the Hospital or Social Services. There are some other excellant sources of support As Lin has stated I'm sure that at Headway and Relate, you will find some invaluable guidance. I really hope the comments/replies on this matter help both you and Richard, and of course your family.

Michelle There are very good replies to this post. Kelley -Stated she had a buzzer, to ask to get out. I was offered an eject button also, which meant , if I couldn't cope, I could stop the machine, and get out. Talk to the Nurse about what it intales, how long etc. Must agree it's a lot easier that a Angiogram. You'll be fine. Take care

Hi Polyanna & Welcome. If I can add a little to the excellent replies you've had already. If it's "Advocacy & Empathy" your looking for, you can find it on here. You take care, onwards and upwards.

Hi Laura I've PM'd you a link - hope it can be of use. Maybe later, it could be posted on this site. Most shopping centres or high street shops, have some sort of mobilty scheme. But I can your Mother wanting a little independance. Depending on what sort of scooter or wheelchair is required, is also a factor in, will it fit in a car. Some of the lightweight scooters are very good, lots of them breakdown into 3 or 4 sections. The motorised wheelchairs, might mean changing the car, as a lot DON'T breakdown into sections. So on that note, I think a Scooter will be more suited for your Mother. Again as well as 3 or 4 wheels, there are indoor & outdoor requirements. The link I sent you, explain a lot more.--Don't forget, your Mother might be intitled for a grant to help with purchase price--again this should be in the link.