Seizure and PSP

[burcumuslu]

Hi everyone

My mother is 69 and has been diagnosed Parkinson in 2009 and last year the doctors changed their diagnose to PSP. First she has lost her balance started to walk with the help then she lost her speaking then started to swallow so we started to give the liquids with tickener. These all happened in 5 months 😳 on august she had uriner infection and she has been hospitilised due to electrlyte imbalance. After this visit to the hospital she is not able to walk at all and she is tied to the bed since august.On October she was back to hospital due to thyroid coma and she totally lost to gulp. So she had PEG operation.

Now she is not speaking , not able to mover her body parts she was only looking with eyes when I call her. Yesterday she slept so long and at night she had seizure I was terrified because I did not know that this could happen. Doctors are not so experienced on this terrible desease in Turkey. I learn so much more info feom curepsp and this site. So I would like to ask you if some of you faced seizure or not ? And if somebody is able to say if we are very close to the end or not ?

I am desperate... Exhausted ... İt is so bad to see that she is becoming weaker and weaker... And it's very sad not to have mom to talk to ....

[Hidden]

Where are you in Turkey? We live outside Fethiye and I care for my partner who has PSP although is not as advanced as your mother. He was diagnosed in March 2013 and will not have a PEG fitted when the time comes. If you look at all my posts here you will find photos of Chris now in a wheelchair, vision very limited, eats soups/pureed food, totally incontinent. Our neurologist is in Fethiye Devlet Hastane and she is great. We have also seen two neurology professors in Ankara and Izmir and overall we have been very impressed with doctors here compared to UK or USA where it seems people struggle for years without a diagnosis. Although from your post it seems they initially said Parkinson's and only confirmed PSP later. This did not happen to us. C had first symptoms in July 2010 but refused to consult doctor for almost three years. When he finally agreed to see a neurologist she told us he had PSP almost at once. I think having a seizure is just the brain's response to the chaos currently present in your mother's body. And I also think for this to happen she must be nearing the end. Whilst this is very sad you must accept that she has very little quality of life at the moment. Also that you have done everything possible and must look after yourself. C has never yet been an in-patient in hospital. I care for him at home and my daughter from first marriage moved here to help on 1st September. He goes to day care in a local private care home two days per week and we are managing quite well. Although I lost weight over the past couple of years lifting him after falls and running around doing all the extra work involved in caring. I am so pleased you posted as I haven't found anyone else in Turkey coping with PSP.

[burcumuslu in reply to Hidden]

Thanks for the support. I live in Istanbul and we look after my mom at home too I did not want to leave her in a centre I don't work I have a helper as I do not have any sis or bro..,we are trying our best to make her feel comfortable..

[vlh4444]

So sorry you are having to go through all this. It is very hard to watch your Mum, or anyone close to you, deteriorating and this seems to have happened quite quickly for you. I'm afraid I don't know anything about the situation in Turkey, we are in UK, but I hope you can get the answers you need. I'm sure Pattz will be a great source of information and support for you.

What part of Turkey are you in? We had a wonderful family holiday two years ago in Kalkan - our only visit to Turkey - and we were quite bowled over by the beauty of the place and the friendliness of the people.

Vicki xx

[burcumuslu in reply to vlh4444]

Hi Vicki

I am from Istanbul... Kalkan is great place eith its nature 👍🏻

Thanks for your support

[NannaB]

It is so sad and I'm sorry I can't do anything to help you. My husband has never had a seizure and hope and pray he never does. We are in the UK, so far away from you. We spent time in Istanbul, in fact our 29th wedding anniversary ( now 43!) and it is an amazing city isn't it. We then spent a night in Trabzon before travelling to Camlihemsin where we stayed a week in a little wooden pansion. Wherever we went, everyone was so friendly and hospitable. It was in August and the area was being visited by hundreds of Hemsin people for their annual festival. Every time we went out, we were invited to join family picnics. Many spoke no English and we didn't speak their language but we got by using the phrase book we took with us. Up in the mountains, with no lights at night, for the first time I saw the wonder of the night sky. The Stars looked as if there was no space between them. A sight I will never forget. An amazing country leaving an amazing memory. As I struggle with caring for my darling husband, memories of the wonderful times we have had keep me going and make me thankful that we have had so many happy years together.

I hope you get the help you need. It's good you are now in contact with Pattz who will know what is available.

Sending you a big hug.

X

[burcumuslu in reply to NannaB]

Thanks for the warm support. 🙏🏻

[Hidden]

Burcum there is a Parkinson's Society in Istanbul which also covers PSP. Have you been in touch with them?

[burcumuslu in reply to Hidden]

Our doctor is one of the Heads of that society ge says that every pstient has a different way of living this desease. They are not talking about the possibilities that you may face they only help you when it happens. How did you decide not to have PEG ? For example

[Hidden]

When C was first diagnosed I researched PSP on the internet (he has never lerned to use a computer) making him read any relevant articles. The issue of fitting a PEG was discovered as part of this process and we discussed it and he said he doesn't want one. To be honest if assisted suicide was available he would have chosen to go like that before now. We couldn't afford to go to Dignitas in Switzerland so we are carrying on as best we can. Without a PEG it would seem death can be painless and quite peaceful. From everythingwe read, and descriptions were mainly on CurePSP website, once the patient can no longer swallow they drift into unconsciousness and eventually die. However, as a British couple with no religion our situation is very different from yours as a Turkish daughter caring for her mother. The culture gap is quite wide and with the initial wrong diagnosis and then your mother's rapid decline I can totally understand how discussion of PEG never took place. All you can do now is what I know you are doing, keep visiting her in hospital, talking to her, holding her hand. Even though she cannot talk to you she can probably hear and understand you. That stage is still in the future for us, but I know it will take much strength to get through it, especially as we have promised C he will die at home if at all possible. Stay strong, you are doing your best. We all are.

[burcumuslu in reply to Hidden]

Thanks Pattz 🙏🏻💕 as you said we couldn't have time to discuss PEG. I asked her and she yes but I am not sure that she understood the situation. And I couldn't decide for her... Sometimes I feel sorry that I have made the choice for her... If were at her place I would certainly go to Dignitas....but she couldn't have the chance to make the decision.. Thanks for listening and replying to me.. Sending a big hug to you.. Take care of yourself it's a long and tough journey.

[jillannf6 in reply to burcumuslu]

agree i have ps{P & would like to got to digntas in swiitz when the time comes]

ol jill

xxx

[Hidden]

Thank you for the hug. I send one to you. This forum is great if you need support or the answer to any questions. Whilst PSP is different for each patient in terms of what symptoms they display and the rate of progression, there always seems to be someone on here who can relate to whatever is happening to you and the person you are caring for. There is usually someone who has the answer to whatever question you may ask. Your English is excellent, which school did you go to?

[burcumuslu in reply to Hidden]

Thanks ☺️ I wouldn't say excellent.. I have graduated from italian high school and I have studied Economics in English. worked hard for 15 years as Marketing and Sales Director in durable sector and I left working life and I am takibg care of my mom and grandma and trying to have fun time with my 12 years old daughter and husband. And do not forget my stress ball :Bianca she is 1,5 years old labrador that gives me all the sffection that I need during this tough times. Take care Pattz thanjs again

[Aaron]

Burcu Hanım merhaba,

Çok geçmiş olsun. Benim anneme de aynı yılda PSP tanısı konuldu. Ancak Dr. yapacak hiç bir şey olmadığını söyledi. Türkiye'de bir çok Dr. bu hastalıktan habersiz ve hastalar kaderleriyle başbaşa bırakılıyor ne yazık ki. Biz de 3 kardeş o yıldan beri evde bu hastalıkla boğuşuyoruz. Internette yaptığım araştırmalardan öğrendim ki bu hastalık ölümcül değil ve ne kadar iyi bakılırsa hastanın yaşam süresi o kadar uzuyor. Ama sıkıntıları çok büyük.

Bu konudaki tecrübe ve bilgilerimizi paylaşmayı düşündüm. Sizin için uygunsa Facebook'tan ya da başka yerden yazışabiliriz.

İyi günler,

Harun Özmen

[e-mail]

[burcumuslu in reply to Aaron]

Harun bey face de sizin isminizde çok kişi var siz beni bulup ekler misiniz ? Burcu Un Muslu